November was a challenging month. What happens to a family when some members feel it is time for long term care while others are not yet ready to discuss the possibility? I write from Colorado and am relieved that there are others who are near to Nana who must make these decisions. In her October 31 email, my mom finally confessed “I am not sure how much longer the present arrangement will work.” The responses from our family were varied. Some family members remain unwilling to discuss the possibility that things have changed. Other family members proposed solutions to people who perhaps were not ready to hear them. Is it time to sell Nana’s house so that the financial resources are available to pay for her long term care? What would this mean for my mother who currently lives with her in the house? These were and are difficult conversations. Nana has her good days and her good weeks where the family can postpone these conversations. But the day is coming, inexorably, perhaps not this week, or this month, but soon.
November 1, 2007
I had no solutions for my mother, no answers. There are so many days where I selfishly think, I am so glad that I am away. I sent her the following:
Hi Mom, I wondered when someone would finally say this "I am not sure how much longer the present arrangement will work." I can sense and imagine from your emails how challenging it must be to live in this situation day in and day out. I am sorry for how difficult this is and has been for you. Cathy
My cousin, oh how I admire how direct she is, cut right to the heart of the matter. If Nana needs full time care, how will the family pay for it? Behold her solution.
J, Please know that I am not attempting to minimize how difficult it must be for you with Nana. I am also interpreting your message as a cry for help in this situation. However, there aren’t a lot of options for Nana right now. Based on discussions with my mother, it sounds like Nana cannot afford 24 hour care in her house. So, the next move from here is to place Nana in a nursing home.
If Nana goes to a nursing home, the house will need to be sold to pay for her care. Nana will need the equity in the house to get into a nice facility. If you spend all the equity on in-home care, most facilities won’t accept Nana as a Medicaid patient. She will end up going to a state facility, and I really wouldn’t wish that on anyone.
So, please be clear, are you asking for the family to start looking into selling the house and moving Nana to a nursing home?
My mom found my cousin’s email upsetting. I think in part my mom wanted some sympathy and support and was a bit shocked to get hit with such a dramatic solution. Many emails followed about money and the realities of the US health care system.
Finally there was some shared understanding.
November 3, 2007
D, even if I were young and healthy, I could not supervise Nana for twenty hours a day any more. Since Dr. L said that Nana should not be alone, and since you say there is no money to provide additional home care, then I guess that the house needs to be sold so that Nana could go to a nursing home. Is this a decision that the family should make? Or is A the one to make the decision because she controls the finances?
My cousin replied:
I think that you and K and my mother need to have that discussion. I don’t think it’s a decision that any one person can make.
I think if Nana is a danger to herself (or the house) when left alone, you should have that discussion as soon as possible.
I can set up a conference call if you all can’t be in the same location. Please let me know if I can help.
November 5, 2007
Last night A was here for about an hour to fix dinner for Nana. She does not think that Nana needs supervision 24/7. She seemed unconcerned about Dr. L warning that Nana should not be left alone.
November 16, 2007
A2 told me tonight that she thought that Nana had a good week. She felt that she enjoyed getting her hair and nails done today. Tonight Nana showed me her fingernails and said that she chose brown polish today. I told her that brown polish looked nice.
I was resting in my room tonight when R came to visit. I did not see him but I heard his voice. He had Piper (his dog) with him and I heard Fluffy barking. After R left, I went into the living room to talk with Nana. She did not remember the visit from R and Piper. Then she said that she used to have a brother named R. When I told her that her brother's name was B, she did not remember him at all. So one minute she seems fine, and the next minute she is very confused.
November 22, 2007
A took Nana and me to D’s house for Thanksgiving dinner. Everything was delicious, and the company was the greatest. A3 and E drove down from Boston to join the family. D2’s new puppy Rosie made the rounds with a greeting for everyone. Then she slept peacefully during dinner. D2 seemed happy to have E to play with before dinner. E was very tolerant of a little boy so much younger than he was.
Yesterday we had a surprise visitor. Barney's son S came to spend the afternoon. He brought Nana a huge bouquet of beautiful flowers. Unfortunately Nana did not remember him. But then today at D’s house, Nana kept asking me who I was. On the way home in the car, she kept saying that she did not see me at D’s house. Nana seemed to have a nice time there anyway. She went to sleep as soon as we got home.
November 26, 2007
M told me yesterday that Nana talked about our Thanksgiving dinner. She said that it was at D’s house, and that A drove her there. So sometimes she does remember things.
Tonight when I returned to the living room, I discovered that the green waste basket that is usually next to my chair, has disappeared. I do not know what Nana has done with it or why. Maybe I will find it tomorrow. Life here is always full of surprises.
Sunday, December 23, 2007
Monday, November 5, 2007
October 2007
My Nana is getting progressively worse. Her need for full time supervision is growing. My mom is finding it more difficult to be the only person responsible for spending 20 of 24 hours watching over Nana. I do not know how she has done it this long. It seems that my Nana no longer needs to sleep. She wanders and creatively rearranges furniture in the night. She sneaks her own food to the dog, Fluffy, who is becoming so fat she can no longer easily go up and down the stairs to leave the house. It would be funny if it were not so sad. And yet, even with all this, there are moments of relative lucidity. A moment when she remembers having had great skill at the piano; skills that are now sadly lost.
Next month's post may be heartbreaking to assemble. The Doctor's Halloween warning that my Nana needs 24/7 care may force my family to have difficult conversations and perhaps to make some hard decisions. Already the emails are flying back and forth. More in the last few days than in most months up to now.
October 1, 2007
Today Nana had a quiet day. But she keeps giving poor Fluffy her cookies.
October 11, 2007
Last Friday after Nana had her hair done, A2 took her out to dinner for Chinese food. A2 said that she was very happy at dinner time. When they came home, Nana went right to bed. Two hours later she came into the living room and asked me when some one would come to fix her dinner. When I told her that A2 already took her out for Chinese food, she did not remember.
Each day Nana goes out on the porch several times to get the mail. Even once she has given it to me, she continues to go outside to look for the mail.
Nana does not seem to notice whether it is daytime or night time outside. She often says good morning to me even if it is dark outside. Tonight she went to bed early. Then she came into the living room to ask me what she should do next. She often asks me what she should be doing. Sometimes it is difficult to find an answer. I used to suggest that she go to play the piano. Yesterday she began to tell me that she does not like to play the piano anymore because she knows that she can't play it the way she once did. I feel sad about that. Before she did not seem to remember that she once played the piano very well.
October 15, 2007
This morning M turned our heat on for the first time this fall. It has been so humid in the house that it was very difficult to open the basement door. Last weekend it was 89 degrees. This weekend it was forty. This morning the house was 65 degrees. It is much more comfortable at 70 degrees.
Whenever Nana hears me in the kitchen or the bathroom, she comes to ask me what I am doing. She is also moving furniture around again. She moved the chair where I sit when I first come into the house. Getting into the house takes a lot of energy for me. Once I am inside, I really need to rest for a few minutes. Then last night I could not get back to my room from the living room because she had left her walker between the dining room table and the big organ speakers. It took me a while to find a place to move the walker out of the way so that I could get back to my room. I was very thankful to finally reach my bed so that I could rest.
October 20, 2007
Tonight for the very first time, Nana became very angry with A2, Nana demanded her dinner. A2 told her that she had already eaten her dinner. Nana did not believe her. Nana often forgets that she has eaten shortly after a meal. Tonight Nana could not be convinced. So A2 asked me if she could give her another dinner. In the interest of peace, I agreed. After her second dinner, Nana asked for more coffee and cookies. That was her third cup of coffee. She will probably up all night again.
For several nights in a row, Nana has been up all night. She comes into my room every hour to ask me what time it is. This morning at 5:00 AM I found the kitchen door wide open again. On Thursday night, Nana created a situation in her mind that required her to solve a problem. There was no problem. She just thought that there was. Then she decided that she could not solve the problem, so I must solve her problem right now. I told her that I would talk with her about it tomorrow. She totally ignored me and began again to tell me what the problem was and why I needed to solve it RIGHT NOW! Again I told her tomorrow. Again she told me to fix it RIGHT NOW! More and more, Nana wears me out. When M comes in the morning, I go to sleep. At least I can get two hours of sleep then.
October 26, 2007
Fluffy has spent the past two nights out doors. She is so fat that she can't get up the steps to get back in the house. The first night it was very warm outside. And even though it rained, she must have found the dog house because she was dry when M went outside to bring her into the house. Last night she was outside again, but she found a way to get inside around seven AM. She was all wet when she came in this time. Nana dried her off with a few kitchen towels and then she began using flannel sheets and trying the give them to me as mine after they were wet. Fluffy ate her dog food in the morning as usual. But she has refused to go outside since she came in this morning. She is having a lot of trouble walking. She is much too heavy. It hurts her to walk. Nana keeps feeding her cookies. M, A2, and I have tried to stop Nana from giving her cookies, but Nana is very sneaky about it. She pretends to eat a piece of cookie, and then she puts it down on the floor for Fluffy. If we catch her at it, she denies EVER feeding Fluffy a cookie. All day today she accused me of poisoning Fluffy. If something is wrong with Fluffy, it must be my fault because I hate all animals. So Nana decided that I could not live her any more. I called A to see if she could take Fluffy to the vet this evening, but she did not want to do it. I am not sure what to do it Nana persists in her determination to get me out of her house. She was really angry about it this afternoon. I was glad to be able to leave the house to go to S’s house for a while. When I came home, M had been able to calm Nana down, But she had not been able to get Fluffy to go outside. Perhaps Fluffy will feel better tomorrow.
October 31, 2007
Dr. L saw Nana yesterday. At the last minute the doctor's office changed the time of the appointment from 4:30 until 8:00 AM. A took Nana to the office. M met A and Nana there. She stayed with Nana so that A could go to work. M was a good person to speak with the doctor because she is with Nana each day. Dr. L said that Nana is fine. He said that her heart is very strong. He said that she should come back to the office in six months. Today the office called to say that Nana's blood test was fine. They are sending a copy of the blood test results to Dr. G. M told me this morning that Dr. L said that Nana should not be left alone. I only leave Nana alone when I go for therapy or to see a doctor myself. I try to make my appointments to co-inside with the times that A2 is here, but it is not always possible. Most days I am with Nana twenty hours a day. She often wanders around all night. I am not sure how much longer the present arrangement will work.
Next month's post may be heartbreaking to assemble. The Doctor's Halloween warning that my Nana needs 24/7 care may force my family to have difficult conversations and perhaps to make some hard decisions. Already the emails are flying back and forth. More in the last few days than in most months up to now.
October 1, 2007
Today Nana had a quiet day. But she keeps giving poor Fluffy her cookies.
October 11, 2007
Last Friday after Nana had her hair done, A2 took her out to dinner for Chinese food. A2 said that she was very happy at dinner time. When they came home, Nana went right to bed. Two hours later she came into the living room and asked me when some one would come to fix her dinner. When I told her that A2 already took her out for Chinese food, she did not remember.
Each day Nana goes out on the porch several times to get the mail. Even once she has given it to me, she continues to go outside to look for the mail.
Nana does not seem to notice whether it is daytime or night time outside. She often says good morning to me even if it is dark outside. Tonight she went to bed early. Then she came into the living room to ask me what she should do next. She often asks me what she should be doing. Sometimes it is difficult to find an answer. I used to suggest that she go to play the piano. Yesterday she began to tell me that she does not like to play the piano anymore because she knows that she can't play it the way she once did. I feel sad about that. Before she did not seem to remember that she once played the piano very well.
October 15, 2007
This morning M turned our heat on for the first time this fall. It has been so humid in the house that it was very difficult to open the basement door. Last weekend it was 89 degrees. This weekend it was forty. This morning the house was 65 degrees. It is much more comfortable at 70 degrees.
Whenever Nana hears me in the kitchen or the bathroom, she comes to ask me what I am doing. She is also moving furniture around again. She moved the chair where I sit when I first come into the house. Getting into the house takes a lot of energy for me. Once I am inside, I really need to rest for a few minutes. Then last night I could not get back to my room from the living room because she had left her walker between the dining room table and the big organ speakers. It took me a while to find a place to move the walker out of the way so that I could get back to my room. I was very thankful to finally reach my bed so that I could rest.
October 20, 2007
Tonight for the very first time, Nana became very angry with A2, Nana demanded her dinner. A2 told her that she had already eaten her dinner. Nana did not believe her. Nana often forgets that she has eaten shortly after a meal. Tonight Nana could not be convinced. So A2 asked me if she could give her another dinner. In the interest of peace, I agreed. After her second dinner, Nana asked for more coffee and cookies. That was her third cup of coffee. She will probably up all night again.
For several nights in a row, Nana has been up all night. She comes into my room every hour to ask me what time it is. This morning at 5:00 AM I found the kitchen door wide open again. On Thursday night, Nana created a situation in her mind that required her to solve a problem. There was no problem. She just thought that there was. Then she decided that she could not solve the problem, so I must solve her problem right now. I told her that I would talk with her about it tomorrow. She totally ignored me and began again to tell me what the problem was and why I needed to solve it RIGHT NOW! Again I told her tomorrow. Again she told me to fix it RIGHT NOW! More and more, Nana wears me out. When M comes in the morning, I go to sleep. At least I can get two hours of sleep then.
October 26, 2007
Fluffy has spent the past two nights out doors. She is so fat that she can't get up the steps to get back in the house. The first night it was very warm outside. And even though it rained, she must have found the dog house because she was dry when M went outside to bring her into the house. Last night she was outside again, but she found a way to get inside around seven AM. She was all wet when she came in this time. Nana dried her off with a few kitchen towels and then she began using flannel sheets and trying the give them to me as mine after they were wet. Fluffy ate her dog food in the morning as usual. But she has refused to go outside since she came in this morning. She is having a lot of trouble walking. She is much too heavy. It hurts her to walk. Nana keeps feeding her cookies. M, A2, and I have tried to stop Nana from giving her cookies, but Nana is very sneaky about it. She pretends to eat a piece of cookie, and then she puts it down on the floor for Fluffy. If we catch her at it, she denies EVER feeding Fluffy a cookie. All day today she accused me of poisoning Fluffy. If something is wrong with Fluffy, it must be my fault because I hate all animals. So Nana decided that I could not live her any more. I called A to see if she could take Fluffy to the vet this evening, but she did not want to do it. I am not sure what to do it Nana persists in her determination to get me out of her house. She was really angry about it this afternoon. I was glad to be able to leave the house to go to S’s house for a while. When I came home, M had been able to calm Nana down, But she had not been able to get Fluffy to go outside. Perhaps Fluffy will feel better tomorrow.
October 31, 2007
Dr. L saw Nana yesterday. At the last minute the doctor's office changed the time of the appointment from 4:30 until 8:00 AM. A took Nana to the office. M met A and Nana there. She stayed with Nana so that A could go to work. M was a good person to speak with the doctor because she is with Nana each day. Dr. L said that Nana is fine. He said that her heart is very strong. He said that she should come back to the office in six months. Today the office called to say that Nana's blood test was fine. They are sending a copy of the blood test results to Dr. G. M told me this morning that Dr. L said that Nana should not be left alone. I only leave Nana alone when I go for therapy or to see a doctor myself. I try to make my appointments to co-inside with the times that A2 is here, but it is not always possible. Most days I am with Nana twenty hours a day. She often wanders around all night. I am not sure how much longer the present arrangement will work.
Saturday, October 27, 2007
September 2007
The signs are getting stronger that Nana will need full time care and supervision soon. It is difficult to understand dementia. The people dealing with it keep trying to find the logic behind the words or actions when there simply is none. I was struck, as I was putting these posts today, at how similar the content of my mother's emails is to some blogs I read written by new mothers. The focus is on eating, grooming, and sleep. I was struck also by how lucky we are to have these wonderful women A2 and M who come and care for my Nana each day. While the grandchildren (like me) of my Nana have scattered across the country, many of her friends and the friends of her children have remained close. Some of these friends of the family (e.g. J) who will come to help keep the house going. I do not know how my family would cope without this community.
September 1, 2007
Nana and I both slept well for two nights. Tuesday night no one slept. Late that night Nana was obsessed with finding her mother. Nothing I said would convince her to go to bed. She kept wandering around the house. Around four AM I heard her upstairs. When M came in the morning, I asked her to check on lights upstairs. It was dark when Nana went up there, so she must have turned on some lights. M found lights on in every room. She also found the ceiling fan running. In each room she found some of Nana’s clothes on the floor. I do no know what Nana was really doing upstairs, but I am thankful that she made it up and down again safely.
Tonight I made some soup. After I ate, I put the pan in the sink to wash. I left the kitchen for a few minutes. When I came back, the pan was gone. I finally found it on the floor in the living room. Nana does not know why she put it there.
M will be away for the three day weekend. She will be back on Tuesday. A2 is due back on Tuesday night. I miss them both when they are not here.
September 5, 2007
A2 is back from vacation. M was wonderful while she was gone, but taking care of Nana plus the house is just too much for one person. It was great that both of them were here today.
The bad news is that Hurricane Felix hit Nicaragua head on. A2 and M are both from Nicaragua. One of A2’s daughters is there now visiting her grandfather. A2 hopes to contact her daughter tonight.
Nana was glad to see A2 tonight. Nana asked her for food as soon as she arrived, even though she came early. But Nana is well fed every day. In fact some of her long pants are too small for her now. But she feels fine. She just can’t remember things.
September 6, 2007
Last night Nana and I stayed up all night. Nana was agitated about one thing after another. Finally at 5:30 AM I thought that she had finally decided to go to bed. Fifteen minutes later I gave up and let myself fall asleep. When I awoke at 9:30 AM, the door to the kitchen was open, so obviously Nana had not stayed in bed. When M came in at 10:00, she could not find Nana. She looked upstairs because she had found her there in the past. She was not upstairs. Poor Fluffy was locked in her cage. Nana had even put a chair in front of the door so that she could not get out. M checked the basement because the door was open. Nana was not there either. So I asked her to look outside. She did not come back for a very long time. I was really getting worried when I heard M’s voice. She had found Nana in the back yard lying on the ground by J’s camper. M managed to get her up and on to the porch. Nana sat on the bench while M went to get the walker. Nana did not seem to have any visible injuries. She complained that her back hurt. M noticed later that Nana had one ankle that was a bit swollen. After breakfast, M helped Nana get back to bed. She slept most of the day. When M came back to fix Nana’s dinner, Nana did not eat much. Then she went back to sleep again.
After Nana was found this morning, I called A to let her know what happened. There are no easy answers about what to do next. But I fear that since Nana has left the house once, she may do it again. Thank goodness she went into the back yard. L Avenue is very busy most of the day.
September 8, 2007
Nana slept all day yesterday. Then she slept all night. I stayed awake all night to make sure that she did not go outside again. This morning when M came, Nana said that she was fine. M gave her a shower. Then Nana ate a good breakfast. She slept again until A2 came to take her to the hair dresser. When she came home, she ate a good dinner and then went to sleep again. Tonight I hope to catch up on some sleep. A is going to look for some kind of alarm for the kitchen door. We agree that it would not be safe to lock all the doors in case of an emergency.
September 13, 2007
M comes from 8:00 to 10:00 AM now. Yesterday when she arrived she told me that the kitchen door was open, but Nana was in the house. I was still awake at 4:30 AM and the kitchen door was closed and locked then. So Nana must have gotten up after that. That evening I went out for therapy while A2 was here. When I came home, she told me that Nana did not eat dinner. She kept saying that she wanted to sleep. She usually wants to eat all the time. But the next morning she was fine. M said that she ate breakfast as usual. Wednesday night when I got home, A2 told me that Nana had a lot of energy that evening. She ate her dinner and then decided that she wanted a shower. Usually it takes a while for M to talk her into taking a shower.
A2 also put all clean sheets and blankets on Nana’s bed. Then she did three loads of laundry. The third load was a heavy blanket. She told me that the washing machine would not work. I thought that she had just blown a fuse again. But then I heard the dryer going. So I feared that my old Maytag had finally failed. I told A2 that I would look at it after I had a chance to rest. I am always exhausted when I first come home. Later I was able to get the old machine started again. The blanket had become unbalanced. Thank goodness I was able to get the machine going again. I brought that Maytag up from West Virginia in 1971. It has NEVER needed service. If it ever does give up the ghost, the whole laundry will have to come apart to get the machine out.
September 15, 2007
This morning when I awoke at 7:30 AM, the kitchen door was wide open. Several of my things had been moved or taken apart. So Nana must have had a busy night. I was still awake until 4:00 AM, so it must have been after that time. Maybe M is right. She said this morning that Nana really needed someone to watch her all the time. So far we have been lucky that Nana has not gone into the street. A said that she would try to find an alarm for the kitchen door. But at least we have cooler weather now. Maybe the change of seasons will help.
September 16, 2007
The kitchen door was closed today when I awoke. It is the first time in a long time that it was closed in the morning. Nana has slept most of the day. A2 tried to get her to play the piano, but she did not want to get up. She just wanted to sleep. But A2 did say that she ate her dinner. I tried to get her interested in the television this afternoon and again tonight. One PBS station is fund raising, so they have lots of music programs available. But Nana just went back to sleep again. I hope that does not mean that she will wander around during the wee hours of the night. I am hoping to get to church tomorrow. I have not been able to go because of the heat for most of the summer. But tonight it is really cool. I was even able to turn both air conditioners off this evening. It certainly is quiet all of a sudden.
September 20, 2007
Yesterday Nana had a good day. When A2 arrived to cook Nana's dinner, Nana insisted that they go out for dinner instead. So A2 took her out. When they arrived home several hours later, A2 told me that she took Nana to the Queen City Diner. Nana ate a hamburger and some iced tea. Then A2 took her to a park where they sat on a bench to watch the river and the sunset. After A2 went home, Nana was a bit restless and wandered around a while. Today Nana was very confused. But she did eat her dinner when A2 came. Since then she has slept most of the time.
September 23, 2007
Nana spent several hours this afternoon trying to find her walker. I did not know where she put it. She finally found it after A2 came tonight to fix her dinner.
A2 did not know where it was either. After dinner, A2 spent some time on the porch fixing the plants. Nana went out there with her. She seemed very interested in what A2 was doing.
Once while Nana was still looking for her walker, she came into the living room with four sacred music booklets and her reading glasses. She told me that it was her lunch. When I told her that it was music instead, she left the room and came back wearing her night gown instead of her clothes. So today was a very mixed day.
September 27, 2007
The lights went out on the TV, the fish tanks, the porch light, and the outside lights. J has been here two hours and he can't find the fuse causing the problem.
I also asked J if he knew why S has not been here for six weeks. He said that he did not know.
Nana has been confused and agitated today. I do not know why.
J just came up to tell me that he can't find the problem. I asked if he could rig up an extension cord so that we could at least watch TV tonight, and we could keep the fish alive.
September 29, 2007
A found an electrician to get our lights back on Thursday. He will also work on a plan to switch us to circuit breakers. A also suggested that the new board be put upstairs so that no one needs to go into the basement to flip a switch. In case of more basement flooding, having the board upstairs makes sense.
I have not seen Nana this evening. A lady from my church took me for a regular visit to Medemerge to get my medication for thyroid. It was my first experience with a Physician's Assistant. The young man I saw was knowledgeable and helpful. He even gave me some samples of Provigil. The last time I had to pay for it myself, it cost me $450.00 for a month's supply. So I was thrilled to receive some samples. It was not until I looked at my new Rx's, that I realized that the man I saw was not a doctor, but a PA. For a regular, non urgent visit, a PA makes sense. After I got home, I slept for six hours. But Nana was fine this morning. She got her hair done this afternoon. And A2 fixed her dinner tonight.
September 1, 2007
Nana and I both slept well for two nights. Tuesday night no one slept. Late that night Nana was obsessed with finding her mother. Nothing I said would convince her to go to bed. She kept wandering around the house. Around four AM I heard her upstairs. When M came in the morning, I asked her to check on lights upstairs. It was dark when Nana went up there, so she must have turned on some lights. M found lights on in every room. She also found the ceiling fan running. In each room she found some of Nana’s clothes on the floor. I do no know what Nana was really doing upstairs, but I am thankful that she made it up and down again safely.
Tonight I made some soup. After I ate, I put the pan in the sink to wash. I left the kitchen for a few minutes. When I came back, the pan was gone. I finally found it on the floor in the living room. Nana does not know why she put it there.
M will be away for the three day weekend. She will be back on Tuesday. A2 is due back on Tuesday night. I miss them both when they are not here.
September 5, 2007
A2 is back from vacation. M was wonderful while she was gone, but taking care of Nana plus the house is just too much for one person. It was great that both of them were here today.
The bad news is that Hurricane Felix hit Nicaragua head on. A2 and M are both from Nicaragua. One of A2’s daughters is there now visiting her grandfather. A2 hopes to contact her daughter tonight.
Nana was glad to see A2 tonight. Nana asked her for food as soon as she arrived, even though she came early. But Nana is well fed every day. In fact some of her long pants are too small for her now. But she feels fine. She just can’t remember things.
September 6, 2007
Last night Nana and I stayed up all night. Nana was agitated about one thing after another. Finally at 5:30 AM I thought that she had finally decided to go to bed. Fifteen minutes later I gave up and let myself fall asleep. When I awoke at 9:30 AM, the door to the kitchen was open, so obviously Nana had not stayed in bed. When M came in at 10:00, she could not find Nana. She looked upstairs because she had found her there in the past. She was not upstairs. Poor Fluffy was locked in her cage. Nana had even put a chair in front of the door so that she could not get out. M checked the basement because the door was open. Nana was not there either. So I asked her to look outside. She did not come back for a very long time. I was really getting worried when I heard M’s voice. She had found Nana in the back yard lying on the ground by J’s camper. M managed to get her up and on to the porch. Nana sat on the bench while M went to get the walker. Nana did not seem to have any visible injuries. She complained that her back hurt. M noticed later that Nana had one ankle that was a bit swollen. After breakfast, M helped Nana get back to bed. She slept most of the day. When M came back to fix Nana’s dinner, Nana did not eat much. Then she went back to sleep again.
After Nana was found this morning, I called A to let her know what happened. There are no easy answers about what to do next. But I fear that since Nana has left the house once, she may do it again. Thank goodness she went into the back yard. L Avenue is very busy most of the day.
September 8, 2007
Nana slept all day yesterday. Then she slept all night. I stayed awake all night to make sure that she did not go outside again. This morning when M came, Nana said that she was fine. M gave her a shower. Then Nana ate a good breakfast. She slept again until A2 came to take her to the hair dresser. When she came home, she ate a good dinner and then went to sleep again. Tonight I hope to catch up on some sleep. A is going to look for some kind of alarm for the kitchen door. We agree that it would not be safe to lock all the doors in case of an emergency.
September 13, 2007
M comes from 8:00 to 10:00 AM now. Yesterday when she arrived she told me that the kitchen door was open, but Nana was in the house. I was still awake at 4:30 AM and the kitchen door was closed and locked then. So Nana must have gotten up after that. That evening I went out for therapy while A2 was here. When I came home, she told me that Nana did not eat dinner. She kept saying that she wanted to sleep. She usually wants to eat all the time. But the next morning she was fine. M said that she ate breakfast as usual. Wednesday night when I got home, A2 told me that Nana had a lot of energy that evening. She ate her dinner and then decided that she wanted a shower. Usually it takes a while for M to talk her into taking a shower.
A2 also put all clean sheets and blankets on Nana’s bed. Then she did three loads of laundry. The third load was a heavy blanket. She told me that the washing machine would not work. I thought that she had just blown a fuse again. But then I heard the dryer going. So I feared that my old Maytag had finally failed. I told A2 that I would look at it after I had a chance to rest. I am always exhausted when I first come home. Later I was able to get the old machine started again. The blanket had become unbalanced. Thank goodness I was able to get the machine going again. I brought that Maytag up from West Virginia in 1971. It has NEVER needed service. If it ever does give up the ghost, the whole laundry will have to come apart to get the machine out.
September 15, 2007
This morning when I awoke at 7:30 AM, the kitchen door was wide open. Several of my things had been moved or taken apart. So Nana must have had a busy night. I was still awake until 4:00 AM, so it must have been after that time. Maybe M is right. She said this morning that Nana really needed someone to watch her all the time. So far we have been lucky that Nana has not gone into the street. A said that she would try to find an alarm for the kitchen door. But at least we have cooler weather now. Maybe the change of seasons will help.
September 16, 2007
The kitchen door was closed today when I awoke. It is the first time in a long time that it was closed in the morning. Nana has slept most of the day. A2 tried to get her to play the piano, but she did not want to get up. She just wanted to sleep. But A2 did say that she ate her dinner. I tried to get her interested in the television this afternoon and again tonight. One PBS station is fund raising, so they have lots of music programs available. But Nana just went back to sleep again. I hope that does not mean that she will wander around during the wee hours of the night. I am hoping to get to church tomorrow. I have not been able to go because of the heat for most of the summer. But tonight it is really cool. I was even able to turn both air conditioners off this evening. It certainly is quiet all of a sudden.
September 20, 2007
Yesterday Nana had a good day. When A2 arrived to cook Nana's dinner, Nana insisted that they go out for dinner instead. So A2 took her out. When they arrived home several hours later, A2 told me that she took Nana to the Queen City Diner. Nana ate a hamburger and some iced tea. Then A2 took her to a park where they sat on a bench to watch the river and the sunset. After A2 went home, Nana was a bit restless and wandered around a while. Today Nana was very confused. But she did eat her dinner when A2 came. Since then she has slept most of the time.
September 23, 2007
Nana spent several hours this afternoon trying to find her walker. I did not know where she put it. She finally found it after A2 came tonight to fix her dinner.
A2 did not know where it was either. After dinner, A2 spent some time on the porch fixing the plants. Nana went out there with her. She seemed very interested in what A2 was doing.
Once while Nana was still looking for her walker, she came into the living room with four sacred music booklets and her reading glasses. She told me that it was her lunch. When I told her that it was music instead, she left the room and came back wearing her night gown instead of her clothes. So today was a very mixed day.
September 27, 2007
The lights went out on the TV, the fish tanks, the porch light, and the outside lights. J has been here two hours and he can't find the fuse causing the problem.
I also asked J if he knew why S has not been here for six weeks. He said that he did not know.
Nana has been confused and agitated today. I do not know why.
J just came up to tell me that he can't find the problem. I asked if he could rig up an extension cord so that we could at least watch TV tonight, and we could keep the fish alive.
September 29, 2007
A found an electrician to get our lights back on Thursday. He will also work on a plan to switch us to circuit breakers. A also suggested that the new board be put upstairs so that no one needs to go into the basement to flip a switch. In case of more basement flooding, having the board upstairs makes sense.
I have not seen Nana this evening. A lady from my church took me for a regular visit to Medemerge to get my medication for thyroid. It was my first experience with a Physician's Assistant. The young man I saw was knowledgeable and helpful. He even gave me some samples of Provigil. The last time I had to pay for it myself, it cost me $450.00 for a month's supply. So I was thrilled to receive some samples. It was not until I looked at my new Rx's, that I realized that the man I saw was not a doctor, but a PA. For a regular, non urgent visit, a PA makes sense. After I got home, I slept for six hours. But Nana was fine this morning. She got her hair done this afternoon. And A2 fixed her dinner tonight.
Friday, September 7, 2007
Wandering
I mentioned in the August summary that one sign that my dad's mom needed more care than she could get at home was her unpredictable wandering.
My Nana has begun to wander. This does not bode well for the status quo. I believe that hard decisions are coming to my family sooner than everyone would like.
On a positive note, I see from this email that I come by my night-owl tendencies honestly.
September 6, 2007
Last night Nana and I stayed up all night. Nana was agitated about one thing after another. Finally at 5:30 AM I thought that she had finally decided to go to bed. Fifteen minutes later I gave up and let myself fall asleep.
When I awoke at 9:30 AM, the door to the kitchen was open, so obviously Nana had not stayed in bed. When M came in at 10:00, she could not find Nana. She looked upstairs because she had found her there in the past. She was not upstairs. Poor Fluffy was locked in her cage. Nana had even put a chair in front of the door so that she could not get out.
M checked the basement because the door was open. Nana was not there either. So I asked her to look outside. She did not come back for a very long time. I was really getting worried when I heard M's voice. She had found Nana in the back yard lying on the ground by J's camper. M managed to get her up and on to the porch. Nana sat on the bench while M went to get the walker. Nana did not seem to have any visible injuries. She complained that her back hurt. M noticed later that Nana had one ankle that was a bit swollen. After breakfast, M helped Nana get back to bed. She slept most of the day. When M came back to fix Nana’s dinner, Nana did not eat much. Then she went back to sleep again.
After Nana was found this morning, I called A to let her know what happened. There are no easy answers about what to do next. But I fear that since Nana has left the house once, she may do it again. Thank goodness she went into the back yard. L*** Avenue is very busy most of the day.
My Nana has begun to wander. This does not bode well for the status quo. I believe that hard decisions are coming to my family sooner than everyone would like.
On a positive note, I see from this email that I come by my night-owl tendencies honestly.
September 6, 2007
Last night Nana and I stayed up all night. Nana was agitated about one thing after another. Finally at 5:30 AM I thought that she had finally decided to go to bed. Fifteen minutes later I gave up and let myself fall asleep.
When I awoke at 9:30 AM, the door to the kitchen was open, so obviously Nana had not stayed in bed. When M came in at 10:00, she could not find Nana. She looked upstairs because she had found her there in the past. She was not upstairs. Poor Fluffy was locked in her cage. Nana had even put a chair in front of the door so that she could not get out.
M checked the basement because the door was open. Nana was not there either. So I asked her to look outside. She did not come back for a very long time. I was really getting worried when I heard M's voice. She had found Nana in the back yard lying on the ground by J's camper. M managed to get her up and on to the porch. Nana sat on the bench while M went to get the walker. Nana did not seem to have any visible injuries. She complained that her back hurt. M noticed later that Nana had one ankle that was a bit swollen. After breakfast, M helped Nana get back to bed. She slept most of the day. When M came back to fix Nana’s dinner, Nana did not eat much. Then she went back to sleep again.
After Nana was found this morning, I called A to let her know what happened. There are no easy answers about what to do next. But I fear that since Nana has left the house once, she may do it again. Thank goodness she went into the back yard. L*** Avenue is very busy most of the day.
Sunday, September 2, 2007
August 2007
My mom is beginning to realize that Nana cannot interpret or process rationale thoughts, that there is no advantage to forcing "truth" on her when her brain can no longer interpret the difference. It is so slow this cognitive decline and yet inexorable. From the outside it looks like the time may be soon when my Nana will need 24/7 care and monitoring. My mom, who has difficulty walking, may not be sufficient to keep them both safe. Since she lives it every day I think it must be very hard to see the changes. There are good days and bad but slowly this disease is eroding the woman my Nana was. The wonderful women who help care for my Nana have been traveling which seems to have exacerbated some of the problems.
I am waiting for the event that triggers a more dramatic intervention by our family. With my dad's mom, that event was my Nannie's visit to a stream where she had met with a childhood boyfriend. In her mind, she was still a young lady going on an outing. The path to the stream was treacherous and she fell and broke her arm. However, she kept trying to convince her daughters that everything was just fine. It wasn't. I don't think we are quite here with my Nana but it feels close.
August 8, 2007
Nana’s friend R is staying with us for a few days. She belonged to Nana’s choir at the Dunellen church. This week R sold her house in Dunellen. She needed to have all her belongings out of the house yesterday. It was a much bigger project than she expected. She finally got to our house at 1:30 this morning. She was really exhausted. She needs a day or two to rest up before she drives back to her home in North Carolina. Nana seems happy to have R here. When R finally sat down in a chair in the living room this morning, Nana said “Now the house is calm.” I am not sure what Nana meant by her statement, but she seemed pleased with the situation.
Note: my Nana is one of those women who was comfortable with the idea of auras, premonitions, astrology and palm reading. I suspect that both my mom and my Nana were comforted having someone capable like R in the house and that truly the house was calmer. It is so like my Nana to say so.
August 11, 2007
Nana’s friend R left Friday morning to drive back home to North Carolina. She called tonight to let us know that she had reached Virginia. She will drive the rest of the way home tomorrow. I think that Nana was happy to have her old friend stay here for a few days. R found that closing her house up to sell was a lot more work than she expected. She was really frazzled the first night that she was here. By last night she was relaxed and ready to start on her journey home.
A2 brought her friend M2 here to meet Nana tonight. She will come to fix Nana’s dinner each night next week while A2 is away. M is also going on vacation next week. But she will only be away one week. When she comes home, she will come twice a day for the next two weeks that A2 is away.
August 19, 2007
Nana has been more confused lately than she was before. She often talks with people who are not there. But Nana is sure that she has visitors several times a day. Today she asked me who fixed this house to look just like her other house. Usually she understands that this house belongs to her. But today she did not seem to make the connection. Maybe tomorrow will be better since she had a lot of sleep today.
August 21, 2007
Nana is not having a good day today. At 5:30 AM she awoke me to say that one of her dogs was lost. I told her that she had just one dog. She seemed angry about that, but she left. Then she came in to complain that there was a gang in her room. I told her that she probably just had a bad dream. In the afternoon Nana told M that she fell while trying to get out of her chair. The chair fell on top of her. She said that she was not hurt. That has happened before when she forgets to use the handle to put the foot rest down before she tries to get up. M has been able to convince Nana that she should be using her walker again. Evidently she was having trouble walking this morning. She told me this morning that her hips hurt when she walked. Also while M was here this evening, Nana refused to speak with R when he called. Normally she races for the phone when it ring just in case it is R calling. Maybe tomorrow will be better.
Aug 25, 2007
Nana went to have her hair done as usual today. Then A brought her home. Then M came back for the third time to fix Nana’s dinner. Nana’s hair looked nice and she was happy about the color of her fingernails. M and I told her that she would look nice for A's birthday party. Then about two hours after M left, Nana came into my room and demanded that I go and get her car and bring it home. When I told her that she did not have a car now, she became furious and said that I was mean and nasty. She became so obsessed and so angry that I finally just said that I could not get her car because I did not have the keys and that I could not walk that far. She persisted with the same demands for two hours. Then she decided that I should move out because she did not like me.
Now she can’t find Fluffy. From some of the things she has said, she may have closed the back door so that Fluffy can’t come in. But since it is 80 degrees outside, and I am exhausted from all of Nana’s demands, I think that I will wait until I have had some sleep before I look for Fluffy. I hope that after Nana has some sleep, she will be calm again.
August 29, 2007
Nana seemed fine most of the day. She ate a good breakfast and a good dinner when M came. Then at about 8:30 tonight, she came to ask me when someone was coming to take her home. I told her that she was already home. She left me and came back a few minutes later with the same question. Later I went into the living room. She thanked me for coming upstairs with her. I did not even try to argue with her again. Since then, about every ten minutes, she has come over to ask me if I will stay with her. I have just answered yes. Maybe I should not try to tell her the truth any more. She seems happy if I just agree with her. If I try to tell her the truth, she gets very upset. Maybe keeping her happy is more important.
August 30, 2007
By this morning, I had pretty much decided to agree with Nana whatever she says. She seems happier that way. When I spoke to M this morning, she has decided to do the same thing. Nana’s situation seems to change from day to day. We will see how this approach works.
August 31, 2007
Nana and I both slept well for two nights. Tuesday night no one slept. Late that night Nana was obsessed with finding her mother. Nothing I said would convince her to go to bed. She kept wandering around the house. Around four AM I heard her upstairs. When M came in the morning, I asked her to check on lights upstairs. It was dark when Nana went up there, so she must have turned on some lights. M found lights on in every room. She also found the ceiling fan running. In each room she found some of Nana’s clothes on the floor. I do no know what Nana was really doing upstairs, but I am thankful that she made it up and down again safely.
Tonight I made some soup. After I ate, I put the pan in the sink to wash. I left the kitchen for a few minutes. When I came back, the pan was gone. I finally found it on the floor in the living room. Nana does not know why she put it there.
M will be away for the three day weekend. She will be back on Tuesday. A2 is due back on Tuesday night. I miss them both when they are not here.
I am waiting for the event that triggers a more dramatic intervention by our family. With my dad's mom, that event was my Nannie's visit to a stream where she had met with a childhood boyfriend. In her mind, she was still a young lady going on an outing. The path to the stream was treacherous and she fell and broke her arm. However, she kept trying to convince her daughters that everything was just fine. It wasn't. I don't think we are quite here with my Nana but it feels close.
August 8, 2007
Nana’s friend R is staying with us for a few days. She belonged to Nana’s choir at the Dunellen church. This week R sold her house in Dunellen. She needed to have all her belongings out of the house yesterday. It was a much bigger project than she expected. She finally got to our house at 1:30 this morning. She was really exhausted. She needs a day or two to rest up before she drives back to her home in North Carolina. Nana seems happy to have R here. When R finally sat down in a chair in the living room this morning, Nana said “Now the house is calm.” I am not sure what Nana meant by her statement, but she seemed pleased with the situation.
Note: my Nana is one of those women who was comfortable with the idea of auras, premonitions, astrology and palm reading. I suspect that both my mom and my Nana were comforted having someone capable like R in the house and that truly the house was calmer. It is so like my Nana to say so.
August 11, 2007
Nana’s friend R left Friday morning to drive back home to North Carolina. She called tonight to let us know that she had reached Virginia. She will drive the rest of the way home tomorrow. I think that Nana was happy to have her old friend stay here for a few days. R found that closing her house up to sell was a lot more work than she expected. She was really frazzled the first night that she was here. By last night she was relaxed and ready to start on her journey home.
A2 brought her friend M2 here to meet Nana tonight. She will come to fix Nana’s dinner each night next week while A2 is away. M is also going on vacation next week. But she will only be away one week. When she comes home, she will come twice a day for the next two weeks that A2 is away.
August 19, 2007
Nana has been more confused lately than she was before. She often talks with people who are not there. But Nana is sure that she has visitors several times a day. Today she asked me who fixed this house to look just like her other house. Usually she understands that this house belongs to her. But today she did not seem to make the connection. Maybe tomorrow will be better since she had a lot of sleep today.
August 21, 2007
Nana is not having a good day today. At 5:30 AM she awoke me to say that one of her dogs was lost. I told her that she had just one dog. She seemed angry about that, but she left. Then she came in to complain that there was a gang in her room. I told her that she probably just had a bad dream. In the afternoon Nana told M that she fell while trying to get out of her chair. The chair fell on top of her. She said that she was not hurt. That has happened before when she forgets to use the handle to put the foot rest down before she tries to get up. M has been able to convince Nana that she should be using her walker again. Evidently she was having trouble walking this morning. She told me this morning that her hips hurt when she walked. Also while M was here this evening, Nana refused to speak with R when he called. Normally she races for the phone when it ring just in case it is R calling. Maybe tomorrow will be better.
Aug 25, 2007
Nana went to have her hair done as usual today. Then A brought her home. Then M came back for the third time to fix Nana’s dinner. Nana’s hair looked nice and she was happy about the color of her fingernails. M and I told her that she would look nice for A's birthday party. Then about two hours after M left, Nana came into my room and demanded that I go and get her car and bring it home. When I told her that she did not have a car now, she became furious and said that I was mean and nasty. She became so obsessed and so angry that I finally just said that I could not get her car because I did not have the keys and that I could not walk that far. She persisted with the same demands for two hours. Then she decided that I should move out because she did not like me.
Now she can’t find Fluffy. From some of the things she has said, she may have closed the back door so that Fluffy can’t come in. But since it is 80 degrees outside, and I am exhausted from all of Nana’s demands, I think that I will wait until I have had some sleep before I look for Fluffy. I hope that after Nana has some sleep, she will be calm again.
August 29, 2007
Nana seemed fine most of the day. She ate a good breakfast and a good dinner when M came. Then at about 8:30 tonight, she came to ask me when someone was coming to take her home. I told her that she was already home. She left me and came back a few minutes later with the same question. Later I went into the living room. She thanked me for coming upstairs with her. I did not even try to argue with her again. Since then, about every ten minutes, she has come over to ask me if I will stay with her. I have just answered yes. Maybe I should not try to tell her the truth any more. She seems happy if I just agree with her. If I try to tell her the truth, she gets very upset. Maybe keeping her happy is more important.
August 30, 2007
By this morning, I had pretty much decided to agree with Nana whatever she says. She seems happier that way. When I spoke to M this morning, she has decided to do the same thing. Nana’s situation seems to change from day to day. We will see how this approach works.
August 31, 2007
Nana and I both slept well for two nights. Tuesday night no one slept. Late that night Nana was obsessed with finding her mother. Nothing I said would convince her to go to bed. She kept wandering around the house. Around four AM I heard her upstairs. When M came in the morning, I asked her to check on lights upstairs. It was dark when Nana went up there, so she must have turned on some lights. M found lights on in every room. She also found the ceiling fan running. In each room she found some of Nana’s clothes on the floor. I do no know what Nana was really doing upstairs, but I am thankful that she made it up and down again safely.
Tonight I made some soup. After I ate, I put the pan in the sink to wash. I left the kitchen for a few minutes. When I came back, the pan was gone. I finally found it on the floor in the living room. Nana does not know why she put it there.
M will be away for the three day weekend. She will be back on Tuesday. A2 is due back on Tuesday night. I miss them both when they are not here.
Saturday, August 4, 2007
July 2007
My Nana continues her slow decline. There are days of lucidity interspersed with days where her knowledge of common things continues to deteriorate. I am so grateful for my mother's frequent updates and yet this process is so sad. Because my mom lives with Nana, she sees the ups and downs more intimately. You can hear (read) my mom's frustration that the other family members are less aware that my Nana will soon need, or already does need, round the clock supervision. These are difficult topics for families to discuss. It is selfish but I am relieved to live 1776 miles away.
July 4
M told us on Friday that she will no longer be able to come on weekends after Saturday. A came on Sunday and brought Nana a cruller and coffee from Dunkin Donuts. I was not here because I went to church for the first time in a long time. Nana told me later that A had come and spent some time talking with her. Time spent with her is more important to Nana than food right now. She can always find a banana or some yogurt if she is hungry.
Nana is sleeping a lot this week. She did not awaken me last night. But she must have been up some time during the night because the kitchen door was unlocked this morning. Thank goodness I do not have to worry about the living room door being open anymore. Nana complained at first when I locked that door and removed the key. But she seems to have accepted that it is necessary now. When I was a little girl, the house was never locked. No one needed to lock doors in the old days. But the world has changed, and so has this neighborhood. Our neighbors in the ranch house next door moved out in the middle of the night a couple of months ago. Even though there is a real estate sign in front of the house, no one has cut the grass, even in the front yard, all summer.
I put the fireworks on TV for Nana tonight. She used to really like watching the Fourth of July programs. But tonight she slept through most of it. I do not blame her. The music was not even very good.
July 13
A tried to take Nana out for dinner tonight after Nana went to the hair dresser. When they got to the restaurant, Nana said that she did not feel well. Once they got back in the car to come home, Nana began vomiting. She said that she was carsick. When they finally got home, Nana refused to get out of the car. She said that she was still sick. Finally A got her into the house, but only as far as the studio chair. I urged A to try to get her into bed where she would be more comfortable and also closer to the bathroom. Nana finally moved to the couch and refused to move any more. So A went home and Nana slept. At 11:00 I found that she had finally moved to her bed. Fluffy was asleep on the floor right next to the bed. Nana is asleep now so I hope that her car sickness is over.
July 14
Nana slept well last night. When A arrived today to fix her breakfast, Nana said that she was all better. She ate eggs and toast and coffee. She has been up and around all day. She also played the piano for a long time. She has not done that in weeks. Tonight when A2 came, she ate a good dinner too. We are all glad that she is feeling better.
July 17
On Monday Nana asked A2 to stay to talk with her while she ate dinner. A2 told me later that Nana’s conversation was logical and that ideas seemed to be clear in her mind.
For the past twelve years I have been going twice a week for therapy. Nana often plays the piano or the organ while I am gone. Sometimes she just sleeps. Today when I got home, she told me that she was upset about being in the house alone. She said that she did not know where I was, even though I told her as I was leaving that I was going out for therapy and that I would be back soon. Today was the first time that she expressed any concern about being alone in the house. Tonight she kept telling me that other people were in the house watching TV in her studio. There is no TV in her studio.
July 26
A2 said that Nana ate a good dinner tonight. Then she went to bed early.
Nana has been having trouble walking. Her sense of balance is not good. She is still refusing to use her walker. She did go out on the porch to get the mail. Then she could not decide what to do with it, so she left it in the kitchen.
July 30
It has been really hot and humid here. Yesterday I pinned my hair up to try to keep cooler. Nana noticed and said that my hair looked nice. So she can see more than she admits to seeing.
We had a thunder storms today where we had thunder for about 90 minutes before we ever saw rain. The thunder was very loud. Fluffy couldn’t find a place to hide where she felt safe. She finally hid next to my bed under a pillow that had fallen on a floor. It is quiet now and she is sleeping peacefully.
When A fixed breakfast for Nana yesterday, she told her that she would be back later to take her out for dinner. When I saw Nana an hour later, she had traded her clothes for a night gown. I had trouble convincing her to get dressed again. But she finally got dressed again and she had a nice time out with A. Nana really needs someone with her all that time. Twice when I have gone out for therapy lately, she has been upset about being alone when I came home.
July 4
M told us on Friday that she will no longer be able to come on weekends after Saturday. A came on Sunday and brought Nana a cruller and coffee from Dunkin Donuts. I was not here because I went to church for the first time in a long time. Nana told me later that A had come and spent some time talking with her. Time spent with her is more important to Nana than food right now. She can always find a banana or some yogurt if she is hungry.
Nana is sleeping a lot this week. She did not awaken me last night. But she must have been up some time during the night because the kitchen door was unlocked this morning. Thank goodness I do not have to worry about the living room door being open anymore. Nana complained at first when I locked that door and removed the key. But she seems to have accepted that it is necessary now. When I was a little girl, the house was never locked. No one needed to lock doors in the old days. But the world has changed, and so has this neighborhood. Our neighbors in the ranch house next door moved out in the middle of the night a couple of months ago. Even though there is a real estate sign in front of the house, no one has cut the grass, even in the front yard, all summer.
I put the fireworks on TV for Nana tonight. She used to really like watching the Fourth of July programs. But tonight she slept through most of it. I do not blame her. The music was not even very good.
July 13
A tried to take Nana out for dinner tonight after Nana went to the hair dresser. When they got to the restaurant, Nana said that she did not feel well. Once they got back in the car to come home, Nana began vomiting. She said that she was carsick. When they finally got home, Nana refused to get out of the car. She said that she was still sick. Finally A got her into the house, but only as far as the studio chair. I urged A to try to get her into bed where she would be more comfortable and also closer to the bathroom. Nana finally moved to the couch and refused to move any more. So A went home and Nana slept. At 11:00 I found that she had finally moved to her bed. Fluffy was asleep on the floor right next to the bed. Nana is asleep now so I hope that her car sickness is over.
July 14
Nana slept well last night. When A arrived today to fix her breakfast, Nana said that she was all better. She ate eggs and toast and coffee. She has been up and around all day. She also played the piano for a long time. She has not done that in weeks. Tonight when A2 came, she ate a good dinner too. We are all glad that she is feeling better.
July 17
On Monday Nana asked A2 to stay to talk with her while she ate dinner. A2 told me later that Nana’s conversation was logical and that ideas seemed to be clear in her mind.
For the past twelve years I have been going twice a week for therapy. Nana often plays the piano or the organ while I am gone. Sometimes she just sleeps. Today when I got home, she told me that she was upset about being in the house alone. She said that she did not know where I was, even though I told her as I was leaving that I was going out for therapy and that I would be back soon. Today was the first time that she expressed any concern about being alone in the house. Tonight she kept telling me that other people were in the house watching TV in her studio. There is no TV in her studio.
July 26
A2 said that Nana ate a good dinner tonight. Then she went to bed early.
Nana has been having trouble walking. Her sense of balance is not good. She is still refusing to use her walker. She did go out on the porch to get the mail. Then she could not decide what to do with it, so she left it in the kitchen.
July 30
It has been really hot and humid here. Yesterday I pinned my hair up to try to keep cooler. Nana noticed and said that my hair looked nice. So she can see more than she admits to seeing.
We had a thunder storms today where we had thunder for about 90 minutes before we ever saw rain. The thunder was very loud. Fluffy couldn’t find a place to hide where she felt safe. She finally hid next to my bed under a pillow that had fallen on a floor. It is quiet now and she is sleeping peacefully.
When A fixed breakfast for Nana yesterday, she told her that she would be back later to take her out for dinner. When I saw Nana an hour later, she had traded her clothes for a night gown. I had trouble convincing her to get dressed again. But she finally got dressed again and she had a nice time out with A. Nana really needs someone with her all that time. Twice when I have gone out for therapy lately, she has been upset about being alone when I came home.
Sunday, July 1, 2007
June 2007
I think my Nana is getting worse. The June 28 email made me laugh. She answered a cup of coffee. I could see my Nana doing this in my mind but it is very sad at the same time.
You may have noticed that my Nana gets her hair done pretty frequently. She's always done this. These days most of us wash our hair every day sometimes twice depending on our activities. My Nana is from a time where a lady had her hair done at the beauty parlor and spent the week keeping the hairdo tidy. I remember her sleeping in a cap and rollers. I cannot imagine but I suspect the sameness of this ritual brings her comfort.
June 2
After several weeks of finding the living room door wide open each morning, I finally locked the door and removed the key. Talking to Nana about the importance of keeping the door closed, especially at night, did not help at all. Both M and A2 do have keys in case of an emergency. It won’t stop Nana from going out the kitchen door, but my chances of hearing the door opening are better in the kitchen.
June 4
Last night I couldn’t find the scissors that I have kept in the bathroom for years. I kept them in the top drawer of the plastic dresser underneath a towel. This morning I asked M to keep an eye out for the scissors. She found them right away in Nana’s room. I have no idea what Nana planned to do with the scissors. But I am a bit concerned that she was going through my drawer. I have put the scissors away in a more secure place. I plan to put away some other scissors that I have in my bedroom. I wonder if I should put away the knives in the kitchen. Each day brings new questions.
June 8
A took Nana out for dinner tonight. Nana said that she had a good time, but she was very tired when she got home. She must also have done more walking than usual because she said that her legs ached. After a short nap she felt fine again.
Tuesday night Nana’s friend R2 called to ask if she could come to visit. Nana knew who she was as soon as they spoke on the phone. R2 came a short time later, and Nana was glad to see her. They had a nice visit. So Nana has had two very good days this week.
June 9
Last night when I told you that Nana had a good day, I spoke too soon. She stayed up all night. At 4:30 AM she came into my room and asked me where BS was. BS was my best friend when I was growing up. She often stayed here over night. But she has lived in Kentucky for thirty years.
On the good news side, A2 took Nana to get her hair done today and also out for dinner. Nana was so happy that A2 took her to visit her daughter L. I have not met L, but Nana really liked her. She was very happy when she came home tonight.
June 13
Today Nana has been more confused than ever before. First she told me that she had taken Fluffy for a ride in her car. Then she told me that she had taken her two cats to her house at the shore and left them there. Then she asked me where Cliff (Pop, her deceased husband) was. I told her that he had been gone a long time. She said that he just came home from work. Then she tried to go upstairs to find him. It is nearly two AM and she is still wandering around telling me things that do not make any sense. I have tried to get her to go to sleep. But so far I have not been successful.
June 17
A few nights ago, Nana’s front tooth fell out. It is a post and crown that has been glued back on several times. The last time, the dentist said that when it fell out the next time, it would need to be replaced. A took Nana yesterday to have the old post removed. On Tuesday Nana will see the dentist for the next step in the process. M and A2 are preparing food that will not irritate the gum. Nana does not seem to be in any distress about the problem. She went to get her hair done yesterday and then went out for dinner with A2.
June 20
Tonight Nana was very confused. But she did eat a good dinner. She can still walk well. She is not in pain. Usually in the morning she is less confused than she is in the evening.
June 28
Nana has been very confused lately. Neither one of us has been getting much sleep. Nana has been wandering around asking me questions until 6:00 AM, 4:00 AM, 3:00 AM, and last night 4:00 AM. I think that she is more confused when she does not sleep. But I do not know how to make her go to sleep. Tonight when the phone rang, she picked up her coffee cup and said hello. I was not able to get to the phone in time to answer it for her.
We are having a heat wave. Yesterday it was 95 degrees. Today it was closer to 100, and it was humid. Thank goodness the AC is still working.
You may have noticed that my Nana gets her hair done pretty frequently. She's always done this. These days most of us wash our hair every day sometimes twice depending on our activities. My Nana is from a time where a lady had her hair done at the beauty parlor and spent the week keeping the hairdo tidy. I remember her sleeping in a cap and rollers. I cannot imagine but I suspect the sameness of this ritual brings her comfort.
June 2
After several weeks of finding the living room door wide open each morning, I finally locked the door and removed the key. Talking to Nana about the importance of keeping the door closed, especially at night, did not help at all. Both M and A2 do have keys in case of an emergency. It won’t stop Nana from going out the kitchen door, but my chances of hearing the door opening are better in the kitchen.
June 4
Last night I couldn’t find the scissors that I have kept in the bathroom for years. I kept them in the top drawer of the plastic dresser underneath a towel. This morning I asked M to keep an eye out for the scissors. She found them right away in Nana’s room. I have no idea what Nana planned to do with the scissors. But I am a bit concerned that she was going through my drawer. I have put the scissors away in a more secure place. I plan to put away some other scissors that I have in my bedroom. I wonder if I should put away the knives in the kitchen. Each day brings new questions.
June 8
A took Nana out for dinner tonight. Nana said that she had a good time, but she was very tired when she got home. She must also have done more walking than usual because she said that her legs ached. After a short nap she felt fine again.
Tuesday night Nana’s friend R2 called to ask if she could come to visit. Nana knew who she was as soon as they spoke on the phone. R2 came a short time later, and Nana was glad to see her. They had a nice visit. So Nana has had two very good days this week.
June 9
Last night when I told you that Nana had a good day, I spoke too soon. She stayed up all night. At 4:30 AM she came into my room and asked me where BS was. BS was my best friend when I was growing up. She often stayed here over night. But she has lived in Kentucky for thirty years.
On the good news side, A2 took Nana to get her hair done today and also out for dinner. Nana was so happy that A2 took her to visit her daughter L. I have not met L, but Nana really liked her. She was very happy when she came home tonight.
June 13
Today Nana has been more confused than ever before. First she told me that she had taken Fluffy for a ride in her car. Then she told me that she had taken her two cats to her house at the shore and left them there. Then she asked me where Cliff (Pop, her deceased husband) was. I told her that he had been gone a long time. She said that he just came home from work. Then she tried to go upstairs to find him. It is nearly two AM and she is still wandering around telling me things that do not make any sense. I have tried to get her to go to sleep. But so far I have not been successful.
June 17
A few nights ago, Nana’s front tooth fell out. It is a post and crown that has been glued back on several times. The last time, the dentist said that when it fell out the next time, it would need to be replaced. A took Nana yesterday to have the old post removed. On Tuesday Nana will see the dentist for the next step in the process. M and A2 are preparing food that will not irritate the gum. Nana does not seem to be in any distress about the problem. She went to get her hair done yesterday and then went out for dinner with A2.
June 20
Tonight Nana was very confused. But she did eat a good dinner. She can still walk well. She is not in pain. Usually in the morning she is less confused than she is in the evening.
June 28
Nana has been very confused lately. Neither one of us has been getting much sleep. Nana has been wandering around asking me questions until 6:00 AM, 4:00 AM, 3:00 AM, and last night 4:00 AM. I think that she is more confused when she does not sleep. But I do not know how to make her go to sleep. Tonight when the phone rang, she picked up her coffee cup and said hello. I was not able to get to the phone in time to answer it for her.
We are having a heat wave. Yesterday it was 95 degrees. Today it was closer to 100, and it was humid. Thank goodness the AC is still working.
Saturday, June 9, 2007
A Parent's Wish
A few weeks ago my mother sent me a link to Parent's Wish a "touching and poignant slideshow of a parents' wish during their old age... Recommended viewing for children whose parents suffer from old age diseases (parkinsons, alzheimers, dementia, etc.)." A direct link the the show is here. There's a Josh Groban song (you raise me up from Closer
) playing during the show so you might want to turn the sound up.
There are special versions for both single mothers and single fathers.
You can learn more about the creation of this inspiring slide show here.
If you are losing your patience and feeling frustrated with the people in your life who are losing their memories and skills, taking a break to watch this slide show may help.
) playing during the show so you might want to turn the sound up.There are special versions for both single mothers and single fathers.
You can learn more about the creation of this inspiring slide show here.
If you are losing your patience and feeling frustrated with the people in your life who are losing their memories and skills, taking a break to watch this slide show may help.
Sunday, May 27, 2007
Who's who
As much as possible I have tried to anonymize this blog so that it could be about any mother, any grandmother. Most of the people discussed are relatives who come and go. My mother's voice is the primary voice here. In posts where her voice and mine are together, my comments are ALWAYS in italics, generally at the beginning of the monthly post.
Many people come to see my Nana, mostly relatives. I generally identify my mom but everyone else is denoted by their first initial which can get confusing as many people share the same first initial. There are also two wonderful women who come to see my Nana and help her throughout the day. They are A2 (so as not to confuse her with my aunt A) and M. To help a bit, I have assembled the above family pedigree. By convention, men are squares and women are circles. Luckily I have a small family.
How to read this blog
Because blogger by default puts the post in reverse chronological order, it can be difficult to figure out where to start reading.
Start at the very first post for an introduction.
All of the other posts are in reverse chronological order. The best way (in my opinion) to is to start with the oldest date available in the "a day in the life" category. Each individual post (one per month) is in chronological order for that month.
Saturday, May 5, 2007
May 2007
Early in Alzheimer's disease, people are aware that they are losing their memories and this self-knowledge creates anxiety. As they decline and become less aware of what they are lost, the panic associated with this condition begins to subside as you can see in the brief May 3 email.
The May 4 email demonstrates a phenomenon I call the 10 minute loop (it can also be a 5 minute loop or a 30 minute loop) it just depends. To me this is one of the most heart breaking patterns of any cognitive impairment. You think that you are having a normal conversation. The person you are talking with asks questions and interacts with you in a way that has a logical flow. Then suddenly, as if the RESET button has been hit, it starts all over again, often with the exact same question, with the conversation proceeding identically.
The messages from my mom this month are beginning to get quite sad. Family members are strangers. Every day events are surprises. The risk of accidents is increasing and it is almost impossible to prevent them.
May 3, 2007
Nana has had several good days in a row. We have had beautiful spring weather. Everything is blooming. The grass is very green. Nana and I are looking forward to the birthday party at D’s house on Sunday. Nana did ask me late tonight where she was. When I told her that she was in her house, she just said OK. She was not a bit agitated the way she has been in the past.
May 4, 2007
Nana has been very confused today. She did go to get her hair done and then A took her out for dinner. When she came home she told me that she found going out very difficult. She said that she had to keep asking A where she was. After A brought her home, Nana was distressed that A did not stay here. She wanted to know why A did not live here. Then she wanted to know where she did live. Then she wanted to know who she lived with there. Then she asked when A got married. Then she asked if she had children. Then she asked if her children lived with her. Then she asked why her children did not live with her. Then she began to ask the questions all over again. I know that I should be patient. And I really try to be kind. But when it is all over, I am really worn out. I know that the questions are not her fault. But I am still exhausted. Maybe she will sleep well tonight since she had a busy day.
May 8, 2007
On Sunday A took us to D’s house for R’s birthday party. We had a wonderful time. Each time we visit I see more of the beautiful home and yard that D and C have. Sunday we sat out on the porch. It has two sky-lights. And the view of the yard from there is spectacular. After we got home, Nana told me that she did not know anyone at the party, but she had a nice time.
Today Nana was very confused. She kept looking for her mother even though I told her that her mother had been gone a long time. Tonight she kept saying that she had two dogs. She wanted to feed both of them a banana even though I told her that she just had one dog and that he did not eat bananas.
At least we are having beautiful weather. The grass is green and everything else is blooming. People with allergies are having a difficult time this spring. But it is nice to look at out the window.
May 11, 2007
On Tuesday night A2 told me that she thought that Nana was confused. On Wednesday morning, M told me that Nana was very confused. On Wednesday night, A2 told me that Nana was logical. Later that night, Nana kept looking for her mother who has been gone for forty years. On Thursday night Nana kept me up most of the night demanding that I leave my bed to see the lights in her room. Finally at four AM, she became very angry when I refused to get out of bed. At 4:30 and again at 5:00 I had to get up to close the door in the kitchen. When I awoke at 9:00 AM the kitchen door was unlocked, but at least it was not open. When M arrived at 10:00, she found the living room door was wide open. But at least Nana was not out doors. Each day seems to bring a new crisis.
May 16, 2007
Today was a quiet day. Nana spent most of the day in the living room in her favorite chair. She slept on and off. She seems to dream often and then be unable to separate dreams from reality. She often says that she has two dogs. Sometimes she thinks that she has a cat. She does not always remember that this is her house. She talks about the people who put her here. She refuses to use her walker, but she is unsteady when she walks. But she is still eating well. And she is not in pain.
May 17, 2007
Today Nana chose to use her walker. But she fell out of her easy chair. She had put up the foot rest. Then she took a short nap. When she woke up, she decided to go to her room. She forgot to put down the foot rest before she stood up. As she stood, the chair tipped over and she landed on the floor on her hands and knees. She said that she was not hurt. She got up and sat in a wooden chair for a few minutes. Then she went to her room. She came into the living room later when R2 stopped to visit. When M came to fix her dinner, we decided that she should sit at the table rather than use the chair with the foot rest up. She ate her dinner and then went to bed. She came back into the living room at about 10:30 to ask me a question. She seemed to be walking OK. Hopefully she will remember to put the footrest down next time.
May 19, 2007
Last night R came to visit Nana. Because I was in the living room, I got a hug too. But R spent most of the time just talking to Nana. Two hours later, Nana accused me of stealing her husband. I assumed that she was talking about Pop. So I explained that Pop was my father and that she was my mother. And I definitely was not trying to steal her husband. R came back today. I spent the whole time in my room. Nana is very possessive about her visitors. Tonight when she was talking about R, she referred to him as her boyfriend. I reminded her that he was her grandson. Now I am wondering if last night accusations were not about Pop, but were about R. Either way it is a sad situation.
May 21, 2007
This afternoon Mr. P called to offer to take Nana to musical club tonight. I thanked him for making the offer, but told him that Nana was very ill last summer and that she often does not know where she is now. Mr. & Mrs. P took Nana to musical club several times during the past two years. But lately she has felt frightened even when she went to get her hair done. Today she has been sleeping most of the day. I do not think that she would do well in a house full of strangers.
May 22, 2007
For years, each time the mailman delivers mail to our house, Fluffy barks furiously. That is often the signal for Nana to go out and get the mail. Yesterday when Fluffy barked, Nana asked me what was wrong with the dog. I told her that the mailman had come. She did not know what I was talking about. She did not know who a mailman was. The same thing happened today.
On the good news side, when I came home from therapy today, I could hear Nana playing the piano. When I got inside, she told me that she had turned on the big organ in the living room and could not figure out how to turn it off. After she went to bed tonight, I found the switch with a flashlight and turned it off. But at least she was playing the organ and the piano.
May 25, 2007
Nana had a good day today. She got her hair done and A took her out for dinner. A said that they had a nice time.
Fluffy did not have a good day. M said this morning that Fluffy had diarrhea and had an accident in the living room. She could not get outdoors fast enough. Last night Nana finished off two pints of coffee ice cream. I am afraid that she gave half of it to poor Fluffy. Fluffy seems better tonight.
May 30, 2007
This past week I have not been getting much sleep. Nana has been wandering around until three or four in the morning. She keeps opening the front door in the living room and leaving it open. One night I stayed up and kept closing and locking the door. I did it three times before I finally fell asleep at four in the morning. When M came in the morning, she told me that the front door was open again. Maybe we will need to remove the key the way R did in the studio and hang the key on fishing line out of sight for emergencies.
Nana is still up now. It is one-thirty AM. I just sent her to play the piano. She sleeps quite often during the day. Maybe that is one reason that she wanders at night.
The May 4 email demonstrates a phenomenon I call the 10 minute loop (it can also be a 5 minute loop or a 30 minute loop) it just depends. To me this is one of the most heart breaking patterns of any cognitive impairment. You think that you are having a normal conversation. The person you are talking with asks questions and interacts with you in a way that has a logical flow. Then suddenly, as if the RESET button has been hit, it starts all over again, often with the exact same question, with the conversation proceeding identically.
The messages from my mom this month are beginning to get quite sad. Family members are strangers. Every day events are surprises. The risk of accidents is increasing and it is almost impossible to prevent them.
May 3, 2007
Nana has had several good days in a row. We have had beautiful spring weather. Everything is blooming. The grass is very green. Nana and I are looking forward to the birthday party at D’s house on Sunday. Nana did ask me late tonight where she was. When I told her that she was in her house, she just said OK. She was not a bit agitated the way she has been in the past.
May 4, 2007
Nana has been very confused today. She did go to get her hair done and then A took her out for dinner. When she came home she told me that she found going out very difficult. She said that she had to keep asking A where she was. After A brought her home, Nana was distressed that A did not stay here. She wanted to know why A did not live here. Then she wanted to know where she did live. Then she wanted to know who she lived with there. Then she asked when A got married. Then she asked if she had children. Then she asked if her children lived with her. Then she asked why her children did not live with her. Then she began to ask the questions all over again. I know that I should be patient. And I really try to be kind. But when it is all over, I am really worn out. I know that the questions are not her fault. But I am still exhausted. Maybe she will sleep well tonight since she had a busy day.
May 8, 2007
On Sunday A took us to D’s house for R’s birthday party. We had a wonderful time. Each time we visit I see more of the beautiful home and yard that D and C have. Sunday we sat out on the porch. It has two sky-lights. And the view of the yard from there is spectacular. After we got home, Nana told me that she did not know anyone at the party, but she had a nice time.
Today Nana was very confused. She kept looking for her mother even though I told her that her mother had been gone a long time. Tonight she kept saying that she had two dogs. She wanted to feed both of them a banana even though I told her that she just had one dog and that he did not eat bananas.
At least we are having beautiful weather. The grass is green and everything else is blooming. People with allergies are having a difficult time this spring. But it is nice to look at out the window.
May 11, 2007
On Tuesday night A2 told me that she thought that Nana was confused. On Wednesday morning, M told me that Nana was very confused. On Wednesday night, A2 told me that Nana was logical. Later that night, Nana kept looking for her mother who has been gone for forty years. On Thursday night Nana kept me up most of the night demanding that I leave my bed to see the lights in her room. Finally at four AM, she became very angry when I refused to get out of bed. At 4:30 and again at 5:00 I had to get up to close the door in the kitchen. When I awoke at 9:00 AM the kitchen door was unlocked, but at least it was not open. When M arrived at 10:00, she found the living room door was wide open. But at least Nana was not out doors. Each day seems to bring a new crisis.
May 16, 2007
Today was a quiet day. Nana spent most of the day in the living room in her favorite chair. She slept on and off. She seems to dream often and then be unable to separate dreams from reality. She often says that she has two dogs. Sometimes she thinks that she has a cat. She does not always remember that this is her house. She talks about the people who put her here. She refuses to use her walker, but she is unsteady when she walks. But she is still eating well. And she is not in pain.
May 17, 2007
Today Nana chose to use her walker. But she fell out of her easy chair. She had put up the foot rest. Then she took a short nap. When she woke up, she decided to go to her room. She forgot to put down the foot rest before she stood up. As she stood, the chair tipped over and she landed on the floor on her hands and knees. She said that she was not hurt. She got up and sat in a wooden chair for a few minutes. Then she went to her room. She came into the living room later when R2 stopped to visit. When M came to fix her dinner, we decided that she should sit at the table rather than use the chair with the foot rest up. She ate her dinner and then went to bed. She came back into the living room at about 10:30 to ask me a question. She seemed to be walking OK. Hopefully she will remember to put the footrest down next time.
May 19, 2007
Last night R came to visit Nana. Because I was in the living room, I got a hug too. But R spent most of the time just talking to Nana. Two hours later, Nana accused me of stealing her husband. I assumed that she was talking about Pop. So I explained that Pop was my father and that she was my mother. And I definitely was not trying to steal her husband. R came back today. I spent the whole time in my room. Nana is very possessive about her visitors. Tonight when she was talking about R, she referred to him as her boyfriend. I reminded her that he was her grandson. Now I am wondering if last night accusations were not about Pop, but were about R. Either way it is a sad situation.
May 21, 2007
This afternoon Mr. P called to offer to take Nana to musical club tonight. I thanked him for making the offer, but told him that Nana was very ill last summer and that she often does not know where she is now. Mr. & Mrs. P took Nana to musical club several times during the past two years. But lately she has felt frightened even when she went to get her hair done. Today she has been sleeping most of the day. I do not think that she would do well in a house full of strangers.
May 22, 2007
For years, each time the mailman delivers mail to our house, Fluffy barks furiously. That is often the signal for Nana to go out and get the mail. Yesterday when Fluffy barked, Nana asked me what was wrong with the dog. I told her that the mailman had come. She did not know what I was talking about. She did not know who a mailman was. The same thing happened today.
On the good news side, when I came home from therapy today, I could hear Nana playing the piano. When I got inside, she told me that she had turned on the big organ in the living room and could not figure out how to turn it off. After she went to bed tonight, I found the switch with a flashlight and turned it off. But at least she was playing the organ and the piano.
May 25, 2007
Nana had a good day today. She got her hair done and A took her out for dinner. A said that they had a nice time.
Fluffy did not have a good day. M said this morning that Fluffy had diarrhea and had an accident in the living room. She could not get outdoors fast enough. Last night Nana finished off two pints of coffee ice cream. I am afraid that she gave half of it to poor Fluffy. Fluffy seems better tonight.
May 30, 2007
This past week I have not been getting much sleep. Nana has been wandering around until three or four in the morning. She keeps opening the front door in the living room and leaving it open. One night I stayed up and kept closing and locking the door. I did it three times before I finally fell asleep at four in the morning. When M came in the morning, she told me that the front door was open again. Maybe we will need to remove the key the way R did in the studio and hang the key on fishing line out of sight for emergencies.
Nana is still up now. It is one-thirty AM. I just sent her to play the piano. She sleeps quite often during the day. Maybe that is one reason that she wanders at night.
Monday, April 23, 2007
April 2007
It is the April 17 email from my mother that inspired me to start this blog. This episode was so stark, so incredibly sad and yet funny at the same time. It's one thing to logically know that people with Alzheimer's Disease simply are not in control of their words and actions. And yet, their irrational behaviors can seem so incredibly personal. I wanted to collect these experiences and share them so that others faced with parents, spouses, or siblings with Alzheimer's disease can get an idea of what to expect. My Nana is really not trying to make my mother suffer. It's just seems like it.
The April 26 and 29 emails demonstate two of the most common and frustrating aspects of Alzheimer's disease. People affected with this disorder become very prone to wander off and must be watched vigilantly. They also have a very unpredictable ability to recognize the people in their lives where sometimes they know exactly who someone is to them and other times they do not.
April 5, 2007
Nana had a good day today. But she seems to be having very vivid dreams that she confuses with reality. She does seem to know that someone will come every night to fix her dinner.
April 8, 2007
Yesterday S came to see Nana bearing a huge flowering plant. Unfortunately Nana did not remember who he was. But S said that she pronounced his name perfectly. Obviously I did not. But Nana must have remembered all the times that Barney talked to her about his son. At any rate it was nice to see S. Nana really liked him even though she could not remember who he was. We invited him to come to see us again.
April 14, 2007
Nana is very agitated tonight. She keeps saying that she needs to put the outside lights on because someone is coming to take me away. Every time I close the front door, she opens it again. I keep hoping that she will go to bed so that I can lock up and go to bed too.
Now Nana has just spent thirty minutes telling me that I must get out of her house. She does not like me. She is going to throw out my computer. For several days I was beginning to think that she was letting some of her anger go. I was mistaken. She is more angry now than she has been for a long time. If she stays this angry, I may need to move somewhere else. Maybe tomorrow will be better.
April 15, 2007
Nana seemed to be a little less angry today. But she did take down the towel bar in the bathroom again. This time M was not able to fix it.
April 16, 2007
Nana was more confused today than she usually is. She keeps saying that there are other people in the house besides the two of us. Tonight she went around turning out all the lights. I have been leaving several lights on at night so that she will not fall if it is too dark. Maybe tomorrow will be better.
April 17, 2007
Today I needed to leave the house before A2 arrived. In the past when this was necessary, Nana was OK. She was OK today, but Fluffy is not feeling well. First Nana gave her another container of wet food. Then she gave her some ice cream. The she gave her a whole pint of my sour cream. We are not sure about the cookies. Then she gave Fluffy half of the dinner that Amanda cooked for her.
When I came into the living room, I discovered that Nana had attacked my computer. The other night she threatened to through it away. She did not do that yet, but she did through the keyboard and the mouse on the floor. Then she turned off all the power. Then she slammed the door closed so that it locked. Then she even took my chair away. These things may not sound so terrible. But even moving a chair across the room is very, very difficult for me. On the good news side, when I got everything put back together, I was able to turn the computer back on again.
Oh yes, she also took the small blanket that I keep on the chair. I still have not found that.
April 20, 2007
Nana had a good day today. She got her hair done and then A took her out for dinner. A said that she was happy during dinner. She ate a yogurt and a banana when she got home. Now she has decided to sleep in her clothes, but she was happy about it.
This week has been pretty good for Nana. She is still confused, but she is more accepting of the situation.
April 26, 2007
On Monday night, A2 forgot to lock the studio door on her way home. At around midnight, Nana came to tell me that the door was not locked. I told her that I would check it before I went to bed. Nana often tells me that I need to fix something that really does not need my attention. About an hour later Nana came to tell me that the car door was unlocked. I have been leaving my car door unlocked lately because sometimes it is difficult to unlock. I knew if Nana knew that the door was unlocked, she must have been outside. If she was outside, then the front door to the studio must not be locked. So I went to check on the door. It was unlocked. So I locked it. On Tuesday when A2 came, I made sure that she knew how important it was to lock the studio door at all times. We were lucky this time that Nana came back into the house. We can’t always count on that happening.
April 29, 2007
On Friday afternoon C called me. Nana picked up her extension after we had said hello. He said “Hi Nana this is C.” She immediately said “I will let you talk with your mother.” Then she hung up. I was shocked to hear that she knew who he was, and that he was my son. Most of the time, she does not even know who I am. But later that afternoon when she went to get her hair done, she did not recognize the woman who has been painting her fingernails for years. So I guess that we are going one step forward, and several steps back. She was OK today.
The April 26 and 29 emails demonstate two of the most common and frustrating aspects of Alzheimer's disease. People affected with this disorder become very prone to wander off and must be watched vigilantly. They also have a very unpredictable ability to recognize the people in their lives where sometimes they know exactly who someone is to them and other times they do not.
April 5, 2007
Nana had a good day today. But she seems to be having very vivid dreams that she confuses with reality. She does seem to know that someone will come every night to fix her dinner.
April 8, 2007
Yesterday S came to see Nana bearing a huge flowering plant. Unfortunately Nana did not remember who he was. But S said that she pronounced his name perfectly. Obviously I did not. But Nana must have remembered all the times that Barney talked to her about his son. At any rate it was nice to see S. Nana really liked him even though she could not remember who he was. We invited him to come to see us again.
April 14, 2007
Nana is very agitated tonight. She keeps saying that she needs to put the outside lights on because someone is coming to take me away. Every time I close the front door, she opens it again. I keep hoping that she will go to bed so that I can lock up and go to bed too.
Now Nana has just spent thirty minutes telling me that I must get out of her house. She does not like me. She is going to throw out my computer. For several days I was beginning to think that she was letting some of her anger go. I was mistaken. She is more angry now than she has been for a long time. If she stays this angry, I may need to move somewhere else. Maybe tomorrow will be better.
April 15, 2007
Nana seemed to be a little less angry today. But she did take down the towel bar in the bathroom again. This time M was not able to fix it.
April 16, 2007
Nana was more confused today than she usually is. She keeps saying that there are other people in the house besides the two of us. Tonight she went around turning out all the lights. I have been leaving several lights on at night so that she will not fall if it is too dark. Maybe tomorrow will be better.
April 17, 2007
Today I needed to leave the house before A2 arrived. In the past when this was necessary, Nana was OK. She was OK today, but Fluffy is not feeling well. First Nana gave her another container of wet food. Then she gave her some ice cream. The she gave her a whole pint of my sour cream. We are not sure about the cookies. Then she gave Fluffy half of the dinner that Amanda cooked for her.
When I came into the living room, I discovered that Nana had attacked my computer. The other night she threatened to through it away. She did not do that yet, but she did through the keyboard and the mouse on the floor. Then she turned off all the power. Then she slammed the door closed so that it locked. Then she even took my chair away. These things may not sound so terrible. But even moving a chair across the room is very, very difficult for me. On the good news side, when I got everything put back together, I was able to turn the computer back on again.
Oh yes, she also took the small blanket that I keep on the chair. I still have not found that.
April 20, 2007
Nana had a good day today. She got her hair done and then A took her out for dinner. A said that she was happy during dinner. She ate a yogurt and a banana when she got home. Now she has decided to sleep in her clothes, but she was happy about it.
This week has been pretty good for Nana. She is still confused, but she is more accepting of the situation.
April 26, 2007
On Monday night, A2 forgot to lock the studio door on her way home. At around midnight, Nana came to tell me that the door was not locked. I told her that I would check it before I went to bed. Nana often tells me that I need to fix something that really does not need my attention. About an hour later Nana came to tell me that the car door was unlocked. I have been leaving my car door unlocked lately because sometimes it is difficult to unlock. I knew if Nana knew that the door was unlocked, she must have been outside. If she was outside, then the front door to the studio must not be locked. So I went to check on the door. It was unlocked. So I locked it. On Tuesday when A2 came, I made sure that she knew how important it was to lock the studio door at all times. We were lucky this time that Nana came back into the house. We can’t always count on that happening.
April 29, 2007
On Friday afternoon C called me. Nana picked up her extension after we had said hello. He said “Hi Nana this is C.” She immediately said “I will let you talk with your mother.” Then she hung up. I was shocked to hear that she knew who he was, and that he was my son. Most of the time, she does not even know who I am. But later that afternoon when she went to get her hair done, she did not recognize the woman who has been painting her fingernails for years. So I guess that we are going one step forward, and several steps back. She was OK today.
March 2007
The symptoms of Alzheimer Disease can be incredibly variable. Some days are terrible and some days the person can seem almost completely normal. It is impossible to predict from day to day.
March 19, 2007
Nana had a good day today. Her friend R came to visit tonight.
Yesterday was not so good. I had made plans to go to church for the first time since early January. Nana woke me at 4:00 AM saying that she needed to escape and she could not get out. I explained that it was the middle of the night and she was in her own house and she should go back to bed. Then she came and told me that someone had put a banana in the fish tank and that she had to work and work to get it out. I was too tired to go back in the living room so I suggested that she leave the fish tank alone and go back to bed.
When I left the house to go to church, I did not see Nana. But the bathroom door was closed, and Fluffy was on her bed. When I came home from church, M was all upset because she could not find Nana when she got here. She looked everywhere. She even called her mother. She finally found Nana upstairs. She had not been up there since last fall when K was still here. M had difficulty convincing Nana that she needed to come back downstairs, and that she should not go up there again.
A2 spent a long time working on the fish tank filters tonight. Nana had taken them all apart yesterday trying to remove the banana, I guess. But A2 got them working again. Life sure has been an adventure around here lately.
March 30, 2007
The past several days have been good for Nana. She is even playing the piano some afternoons. Today she got her hair done. Then A took her out for dinner. We have had sunshine and warm weather two days in a row. Maybe spring really is here.
March 19, 2007
Nana had a good day today. Her friend R came to visit tonight.
Yesterday was not so good. I had made plans to go to church for the first time since early January. Nana woke me at 4:00 AM saying that she needed to escape and she could not get out. I explained that it was the middle of the night and she was in her own house and she should go back to bed. Then she came and told me that someone had put a banana in the fish tank and that she had to work and work to get it out. I was too tired to go back in the living room so I suggested that she leave the fish tank alone and go back to bed.
When I left the house to go to church, I did not see Nana. But the bathroom door was closed, and Fluffy was on her bed. When I came home from church, M was all upset because she could not find Nana when she got here. She looked everywhere. She even called her mother. She finally found Nana upstairs. She had not been up there since last fall when K was still here. M had difficulty convincing Nana that she needed to come back downstairs, and that she should not go up there again.
A2 spent a long time working on the fish tank filters tonight. Nana had taken them all apart yesterday trying to remove the banana, I guess. But A2 got them working again. Life sure has been an adventure around here lately.
March 30, 2007
The past several days have been good for Nana. She is even playing the piano some afternoons. Today she got her hair done. Then A took her out for dinner. We have had sunshine and warm weather two days in a row. Maybe spring really is here.
November 2006
A different cousin spent time with Nana in November. One problem with aging is just about no medical problem shows up in isolation. Along with her dementia, my Nana is fighting high blood pressure and some other problems. Aricept and Exelon are two of the drugs used to treat Alzheimer's disease.
November 6, 2006
I took Nana to see her cardiologist, Dr. L, today. When she was in the hospital she was taken off of her BP meds because it was running low. Today she was between 130/90 and 145/100 in various positions, so he is starting her back on Hyzaar (a combination of Losartan and Hydrochlorothiazide).
The main concern now is Nana's memory. She has some good days and some bad, but overall the trend seems to be downhill. She sees me and J about everyday and is now having trouble remembering our names. She also believes A is her mother, not the opposite. The days she has more familiar interaction seem to be her better days, so I would like to encourage everyone to continue the phone calls. Please don't be shocked or offended if she doesn't recognize who you are.
We are going to consult Dr. G and see if Aricept or Exelon might help.
November 6, 2006
I took Nana to see her cardiologist, Dr. L, today. When she was in the hospital she was taken off of her BP meds because it was running low. Today she was between 130/90 and 145/100 in various positions, so he is starting her back on Hyzaar (a combination of Losartan and Hydrochlorothiazide).
The main concern now is Nana's memory. She has some good days and some bad, but overall the trend seems to be downhill. She sees me and J about everyday and is now having trouble remembering our names. She also believes A is her mother, not the opposite. The days she has more familiar interaction seem to be her better days, so I would like to encourage everyone to continue the phone calls. Please don't be shocked or offended if she doesn't recognize who you are.
We are going to consult Dr. G and see if Aricept or Exelon might help.
September 2006
Through the summer and into September, Nana was in a rehab center. Many from our family visited her there and wrote about the experience. One of the most troubling experiences for families is the loss of recognition of people they have known for years. By this point, Nana was mixing up many people in our family. This is also the point where we started to realize that Nana simply was not going to get better from this time forward. We were into the slow decline.
Sept 5, 2006 – my sister in law
I am glad we came up to see Nana last weekend but I am so sorry to hear she is not getting better. I am also glad K and R are visiting. Though Nana didn’t really know who we were, she was really happy to have the four of us visit – we stayed for about 3 hours, had a good (though cyclical) conversation and looked through lots of old photos.
Sept 5, 2006 – my cousin
Here’s the latest:
Mom talked to Dr. G yesterday. He told her he thinks that Nana will be miserable and die if we send her to a nursing home for the next 6 weeks to get antibiotics. He also said that the drain for Nana’s cyst will be in for the rest of her life. She will need to go in periodically to have CT scans and have the drain repositioned, but that can be done on an outpatient basis.
Nana’s cognitive state hasn’t improved.
It sounds like at this point it’s just a waiting game. Nana isn’t going to get better.
Sept 5, 2006 – my sister in law
I am glad we came up to see Nana last weekend but I am so sorry to hear she is not getting better. I am also glad K and R are visiting. Though Nana didn’t really know who we were, she was really happy to have the four of us visit – we stayed for about 3 hours, had a good (though cyclical) conversation and looked through lots of old photos.
Sept 5, 2006 – my cousin
Here’s the latest:
Mom talked to Dr. G yesterday. He told her he thinks that Nana will be miserable and die if we send her to a nursing home for the next 6 weeks to get antibiotics. He also said that the drain for Nana’s cyst will be in for the rest of her life. She will need to go in periodically to have CT scans and have the drain repositioned, but that can be done on an outpatient basis.
Nana’s cognitive state hasn’t improved.
It sounds like at this point it’s just a waiting game. Nana isn’t going to get better.
July 2006
Over the summer of 2006, Nana spent several months going in and out of the hospital and in and out of rehab with a recurrent liver cyst. The stress of this experience worsened her other symptoms as you can see in this email from my cousin.
July 29, 2006
I just wanted to give you all an update on Nana. We still don’t have a clear diagnosis. They’re keeping her in the hospital on a diagnosis of undifferentiated belly pain. Her white cell count was high when she went into the hospital and they have taken 500 cc’s of fluid out of a cyst on her liver. They did an x-ray and a CT scan of her abdomen. They did more blood work today, but we haven’t gotten the results yet.
They were going to release her today, but she told the doctor she was still having pain, so he didn’t release her. Her belly is also still very distended. We’re trying to get more answers as to the belly distension. I’m really not sure why that seems have nothing to do with why she’s staying in the hospital.
She is also complaining of having pain from moving around, but that could be from being in bed for 5 days. She is getting up and getting herself to the bathroom.
The trip to the hospital has also highlighted her mental decline (which can be exacerbated by sickness and changes in routine). I don’t want to imply that this won’t improve when she gets back home, but it’s what I’ve witnessed and what my mother has told me.
Nana seems to know who she is and where she is, but not necessarily when it is. She seems to swing in and out of remembering things. Today she thought I was J’s daughter (the writer is A's daughter). She only remembered having 2 grandchildren (me and R - she has 4 grandchildren) and only remembers D (not M and B; her great grandchildren). Also, at times she didn’t remember all of her children. She seems to be associating J (my mom) with everything.
I don’t want to scare any of you. She seems generally comfortable and in no major distress. She is eating. I would feel better if we had a diagnosis and I’m trying to push my mother to get as many answers as possible before they release her.
July 29, 2006
I just wanted to give you all an update on Nana. We still don’t have a clear diagnosis. They’re keeping her in the hospital on a diagnosis of undifferentiated belly pain. Her white cell count was high when she went into the hospital and they have taken 500 cc’s of fluid out of a cyst on her liver. They did an x-ray and a CT scan of her abdomen. They did more blood work today, but we haven’t gotten the results yet.
They were going to release her today, but she told the doctor she was still having pain, so he didn’t release her. Her belly is also still very distended. We’re trying to get more answers as to the belly distension. I’m really not sure why that seems have nothing to do with why she’s staying in the hospital.
She is also complaining of having pain from moving around, but that could be from being in bed for 5 days. She is getting up and getting herself to the bathroom.
The trip to the hospital has also highlighted her mental decline (which can be exacerbated by sickness and changes in routine). I don’t want to imply that this won’t improve when she gets back home, but it’s what I’ve witnessed and what my mother has told me.
Nana seems to know who she is and where she is, but not necessarily when it is. She seems to swing in and out of remembering things. Today she thought I was J’s daughter (the writer is A's daughter). She only remembered having 2 grandchildren (me and R - she has 4 grandchildren) and only remembers D (not M and B; her great grandchildren). Also, at times she didn’t remember all of her children. She seems to be associating J (my mom) with everything.
I don’t want to scare any of you. She seems generally comfortable and in no major distress. She is eating. I would feel better if we had a diagnosis and I’m trying to push my mother to get as many answers as possible before they release her.
March 2006
By this point, my Nana's memory was beginning to noticeably impair her day to day interactions. Impulse control is another common sign of Alzheimer's disease.
March 1, 2006
Nana saw her doctor last week. He told her that she was fine and to come back in a year. She wheezes sometimes, but she has an inhaler that works pretty well. Each day seems to bring a new crisis. But so far we have managed. I was able to show her how to use the coffee maker today. We will have to see if she remembers tomorrow.
March 9, 2006 - an email from my cousin
Things with Nana are tough. Nana is definitely declining. There are signs of dementia and her eyesight is an issue. It makes her dependant and that makes her frustrated. She is also having impulse control issues (wants what she wants when she wants it) and it's getting more inappropriate (both with family and with others). But that's not unusual in someone 88 years old.
I've been trying to get my mother to put Nana (or at least talk to her about it) on an anti-dementia medication. I can't get her to understand that once Nana is bad enough to be an issue, it's too late.
March 1, 2006
Nana saw her doctor last week. He told her that she was fine and to come back in a year. She wheezes sometimes, but she has an inhaler that works pretty well. Each day seems to bring a new crisis. But so far we have managed. I was able to show her how to use the coffee maker today. We will have to see if she remembers tomorrow.
March 9, 2006 - an email from my cousin
Things with Nana are tough. Nana is definitely declining. There are signs of dementia and her eyesight is an issue. It makes her dependant and that makes her frustrated. She is also having impulse control issues (wants what she wants when she wants it) and it's getting more inappropriate (both with family and with others). But that's not unusual in someone 88 years old.
I've been trying to get my mother to put Nana (or at least talk to her about it) on an anti-dementia medication. I can't get her to understand that once Nana is bad enough to be an issue, it's too late.
Sunday, April 22, 2007
February 2006
I am missing a year of emails from my mother. In this time Barney died. Many details are missing. I asked my mother whether she saved any messages from that period and she sent me the following:
I am afraid that I purge my sent messages about every two or three weeks. Most of the messages I send are very brief and not very important (I disagree but I didn't save them either). But I think that I can remember how Nana was when she was with Barney. Nana did the driving, but Barney did most of the thinking. Nana functioned pretty well during that time, but there were signs that she was already having problems with her memory and judgment. She was still playing the organ at church and at a funeral home. She always remembered when she needed to be somewhere for a service. When she and Barney were at D's (my cousin) wedding (September 2003), she sideswiped a truck that was parked along the road and broke the side mirror on her car. Barney and I advised her to just pay for it to be replaced without calling her insurance company because it was not very expensive, and the insurance company would raise her rates and maybe even make her take a driving test. So she paid for it herself.
A few weeks later, she backed into a woman in the parking lot of CVS. Nana’s car was not damaged, but the other lady was crying because her car was new and Nana backed into the side of it. So Nana told her not to worry, that she would pay for it to be fixed. She told her to get an estimate. The woman and her daughter came the next day and Nana wrote her a check. I looked out the window of my room. The two doors on the side were clearly bashed-in. Later I asked Nana why she did not call the insurance company. She said that Barney and I told her not to when she broke her mirror. The car she hit was a brand new BMW. I did not even ask what it cost her. It was too late to do anything about it.
As Alzheimer's disease progresses, it is common for people to lose skills they once had. This is frustrating for them and for the people who live with them. There is a depressing, but outstanding, Patrick Stewart movie that shows this progression clearly: Safe House.
Feb 28, 2006
A (my aunt) gave Nana a coffee maker that will make just one cup. She showed Nana how to use it Sunday night when she brought us home. Tonight Nana told me that it does not work. It spills hot water all over the place. I suspect that she is not locking the coffeemaker before she turns it on. I told her that I would try to teach her how to use it tomorrow. She can no longer use the microwave, so I might not be successful. But I will try.
I am afraid that I purge my sent messages about every two or three weeks. Most of the messages I send are very brief and not very important (I disagree but I didn't save them either). But I think that I can remember how Nana was when she was with Barney. Nana did the driving, but Barney did most of the thinking. Nana functioned pretty well during that time, but there were signs that she was already having problems with her memory and judgment. She was still playing the organ at church and at a funeral home. She always remembered when she needed to be somewhere for a service. When she and Barney were at D's (my cousin) wedding (September 2003), she sideswiped a truck that was parked along the road and broke the side mirror on her car. Barney and I advised her to just pay for it to be replaced without calling her insurance company because it was not very expensive, and the insurance company would raise her rates and maybe even make her take a driving test. So she paid for it herself.
A few weeks later, she backed into a woman in the parking lot of CVS. Nana’s car was not damaged, but the other lady was crying because her car was new and Nana backed into the side of it. So Nana told her not to worry, that she would pay for it to be fixed. She told her to get an estimate. The woman and her daughter came the next day and Nana wrote her a check. I looked out the window of my room. The two doors on the side were clearly bashed-in. Later I asked Nana why she did not call the insurance company. She said that Barney and I told her not to when she broke her mirror. The car she hit was a brand new BMW. I did not even ask what it cost her. It was too late to do anything about it.
As Alzheimer's disease progresses, it is common for people to lose skills they once had. This is frustrating for them and for the people who live with them. There is a depressing, but outstanding, Patrick Stewart movie that shows this progression clearly: Safe House
.Feb 28, 2006
A (my aunt) gave Nana a coffee maker that will make just one cup. She showed Nana how to use it Sunday night when she brought us home. Tonight Nana told me that it does not work. It spills hot water all over the place. I suspect that she is not locking the coffeemaker before she turns it on. I told her that I would try to teach her how to use it tomorrow. She can no longer use the microwave, so I might not be successful. But I will try.
November 2004
I sent my Nana flowers for the Anniversary of my Pop's death. I really struggle with this type of event. Is it better to acknowledge the event and the pain or to not remember it? That year I sent flowers. In later years, as my Nana's memory had faded, I have just skipped it.
The flowers that you sent arrived this morning. Nana was thrilled. You are the only one who remembered the anniversary for her. Nana spent an hour on the phone with Barney’s son S this afternoon. They talked about the fact that Barney is dying. Barney told Nana many times that he wanted to be buried with his parents in Hillside Cemetery. He told her that his name is already there, just waiting for him. Unfortunately he never bothered to tell his son. He was planning to bury him in the Russian cemetery with his mother. Nana is feeling distressed about the whole thing.
Now she is mad at me. She does not wear her hearing aids. Then she asks me the same question over and over again because she can not hear my answers. I finally asked her to put in her hearing aids if she wanted to ask me questions. For some reason she heard that and went upstairs mad. I think that part of her anger is about Barney and maybe even Pop. I am the only one handy to be mad at.
Anger can also be a sign of Alzheimer's disease. You can see here that my Nana has spikes of anger that are difficult to anticipate.
Nov 22, 2004The flowers that you sent arrived this morning. Nana was thrilled. You are the only one who remembered the anniversary for her. Nana spent an hour on the phone with Barney’s son S this afternoon. They talked about the fact that Barney is dying. Barney told Nana many times that he wanted to be buried with his parents in Hillside Cemetery. He told her that his name is already there, just waiting for him. Unfortunately he never bothered to tell his son. He was planning to bury him in the Russian cemetery with his mother. Nana is feeling distressed about the whole thing.
Now she is mad at me. She does not wear her hearing aids. Then she asks me the same question over and over again because she can not hear my answers. I finally asked her to put in her hearing aids if she wanted to ask me questions. For some reason she heard that and went upstairs mad. I think that part of her anger is about Barney and maybe even Pop. I am the only one handy to be mad at.
October 2004
Oct 2, 2004
Barney is in the hospital again, Overlook instead of Muhlenberg this time. Barney’s son S says that his father is in lala land. But he says that Barney is happy and not in pain. I guess that the doctors are trying to find out if the bladder cancer has spread to other places. Things do not sound too good for Barney, but you can’t feel sorry for a man who lived to age 93 without taking any medicine. Until a few weeks ago, his mind was sharp, and he was a wonderful story-teller. Even if he does not make it this time, Nana was lucky that he came into her life at a time when she was thinking that her life might be over. He made her smile again.
Oct 12, 2004
The rats seem to be gone. They finally had to put poison in the basement to get rid of them. One night a rat ate one of Nana’s cockatiels. The next day she gave the surviving birds away, and decided to put poison in the basement. We are still being careful to put all the food away immediately.
Nana went back to the eye doctor today. The first laser surgery fixed most of the problem. But the doctor found some leakage today. Nana is to go back for a second laser surgery in three weeks. She came home very disappointed. She had hoped to get glasses so that she could see again. Maybe she can next time.
Barney was just transferred to a rehab center today. They hope he will get strong enough for surgery to remove his bladder. Evidently they found cancer on the outside of it. His son is hopeful that he will get better. We hope so too.
On Friday Nana and I had lunch with W (a high school friend of my mother) and his mother (Mrs. S). The two mothers seemed to bond immediately. Perhaps they can understand each other because they both have trouble with sight and hearing. At one point I saw Mrs. S touch Nana’s ears. Nana has hearing aids that fit totally inside her ears. Mrs. S has the old fashioned kind with a battery pack attached. It was a very nice lunch for us all.
Oct 22, 2004
Today I took Nana to get her hair done. When she came out and got into my car, the car would not start. The battery was dead. B&B Auto Repair could not come to get my car. So A (my aunt; my mom's sister) rescued us. B&B will pick up my car tomorrow. A took Nana to see Barney tonight. A said that Nana and Barney were just glowing. Nana thought that he looked a little better tonight. It is a shame that we can’t get them together more often. Those two really love each other. Barney still has many medical problems, but I am glad to hear that he was feeling a bit better tonight.
Barney is in the hospital again, Overlook instead of Muhlenberg this time. Barney’s son S says that his father is in lala land. But he says that Barney is happy and not in pain. I guess that the doctors are trying to find out if the bladder cancer has spread to other places. Things do not sound too good for Barney, but you can’t feel sorry for a man who lived to age 93 without taking any medicine. Until a few weeks ago, his mind was sharp, and he was a wonderful story-teller. Even if he does not make it this time, Nana was lucky that he came into her life at a time when she was thinking that her life might be over. He made her smile again.
Oct 12, 2004
The rats seem to be gone. They finally had to put poison in the basement to get rid of them. One night a rat ate one of Nana’s cockatiels. The next day she gave the surviving birds away, and decided to put poison in the basement. We are still being careful to put all the food away immediately.
Nana went back to the eye doctor today. The first laser surgery fixed most of the problem. But the doctor found some leakage today. Nana is to go back for a second laser surgery in three weeks. She came home very disappointed. She had hoped to get glasses so that she could see again. Maybe she can next time.
Barney was just transferred to a rehab center today. They hope he will get strong enough for surgery to remove his bladder. Evidently they found cancer on the outside of it. His son is hopeful that he will get better. We hope so too.
On Friday Nana and I had lunch with W (a high school friend of my mother) and his mother (Mrs. S). The two mothers seemed to bond immediately. Perhaps they can understand each other because they both have trouble with sight and hearing. At one point I saw Mrs. S touch Nana’s ears. Nana has hearing aids that fit totally inside her ears. Mrs. S has the old fashioned kind with a battery pack attached. It was a very nice lunch for us all.
Oct 22, 2004
Today I took Nana to get her hair done. When she came out and got into my car, the car would not start. The battery was dead. B&B Auto Repair could not come to get my car. So A (my aunt; my mom's sister) rescued us. B&B will pick up my car tomorrow. A took Nana to see Barney tonight. A said that Nana and Barney were just glowing. Nana thought that he looked a little better tonight. It is a shame that we can’t get them together more often. Those two really love each other. Barney still has many medical problems, but I am glad to hear that he was feeling a bit better tonight.
September 2004
Depression is one of the hallmark features of Alzheimer's Disease. These emails highlight my Nana's early stuggle with depression over her loss of vision and independence.
Sept 2, 2004
Last night Nana’s mood had changed. She said that she wanted to learn more about what acupuncture was. Today she is back to saying that she thought that she would stay in bed all day because there was not any reason to get up now.
Sept 20, 2004
Nana is doing OK. She swings between eagerness to go somewhere and depression where she says that there is no reason for her to get up each day. The good news is that a small amount of vision has returned. Perhaps that is why the doctor who did the cool laser surgery told her to come back in six weeks. Perhaps it takes that long for the eye to stabilize so that she can be given glasses to maximize the vision that is left. A (my aunt; my mother's sister) and I are trying to take her places. On Thursday I took her to get her hair done. On Saturday A took her to the drugstore and to the A&P. On Saturday night A is having a birthday dinner for R’s mother
Barney is out of the hospital and the rehab facility and happy to be at home again. He is not driving yet, so we have not seen him. But Barney and his son S are both invited to A’s on Saturday for the birthday dinner.
Sept 2, 2004
Last night Nana’s mood had changed. She said that she wanted to learn more about what acupuncture was. Today she is back to saying that she thought that she would stay in bed all day because there was not any reason to get up now.
Sept 20, 2004
Nana is doing OK. She swings between eagerness to go somewhere and depression where she says that there is no reason for her to get up each day. The good news is that a small amount of vision has returned. Perhaps that is why the doctor who did the cool laser surgery told her to come back in six weeks. Perhaps it takes that long for the eye to stabilize so that she can be given glasses to maximize the vision that is left. A (my aunt; my mother's sister) and I are trying to take her places. On Thursday I took her to get her hair done. On Saturday A took her to the drugstore and to the A&P. On Saturday night A is having a birthday dinner for R’s mother
Barney is out of the hospital and the rehab facility and happy to be at home again. He is not driving yet, so we have not seen him. But Barney and his son S are both invited to A’s on Saturday for the birthday dinner.
August 2004
I received these emails from my mother in August of 2004 about her experience living with Nana. I've redacted all names except my Nana's. It is my feeling that my Nana's loss of vision and independence accelerated her decline. She is understandably frustrated in these early emails. I cannot imagine how difficult this experience must have been after more than 80 years of being self-sufficient.
Aug 22, 2004
Nana has been having serious trouble with her vision. She can’t see her doctor until next Wednesday. She is hoping that the problem is just a cataract that can be removed. Until then, she can’t drive or play the organ. She is not a happy camper.
Aug 23, 2004
They put down rat poison about ten days ago. I have not seen or heard any rats lately. It has been a real battle to get Nana to put food away. The other day I found three Ritz crackers with peanut butter on the counter. When I asked her about them, she said that she planned to give them to the dog later. Peanut butter is what they put on the rat traps. She just has left food around all her life. She does not think that it is important. So I guess that I will just have to keep putting it away for her. She has no plans to change at her age.
Nana’s vision is more of a concern. A (my aunt) is taking her to a specialist at the moment. She couldn’t get an appointment with her regular eye doctor until Wednesday. I do not know if it was a lack of good communication skills, or if the girls at that doctor’s office were just being difficult. Nana’s vision seems to have become very poor in just a couple of weeks. She thinks that it is a cataract. But I have never heard of a cataract problem getting so bad so quickly. I will let you know as soon as we hear anything new.
Aug 23, 2004
It appears that Nana has macular degeneration in both eyes now. About three years ago when Nana was first diagnosed, the doctor told her that there was no treatment for the problem. Today she was told that there is treatment that is still experimental. But at least there is some hope now. A will take her back on Wednesday for an office procedure, and to JFK Hospital next Monday for some laser treatment. When Nana told the doctor that she would have to quit her church job, the doctor winked at her and told her not to do that yet.
Aug 22, 2004
Nana has been having serious trouble with her vision. She can’t see her doctor until next Wednesday. She is hoping that the problem is just a cataract that can be removed. Until then, she can’t drive or play the organ. She is not a happy camper.
Aug 23, 2004
They put down rat poison about ten days ago. I have not seen or heard any rats lately. It has been a real battle to get Nana to put food away. The other day I found three Ritz crackers with peanut butter on the counter. When I asked her about them, she said that she planned to give them to the dog later. Peanut butter is what they put on the rat traps. She just has left food around all her life. She does not think that it is important. So I guess that I will just have to keep putting it away for her. She has no plans to change at her age.
Nana’s vision is more of a concern. A (my aunt) is taking her to a specialist at the moment. She couldn’t get an appointment with her regular eye doctor until Wednesday. I do not know if it was a lack of good communication skills, or if the girls at that doctor’s office were just being difficult. Nana’s vision seems to have become very poor in just a couple of weeks. She thinks that it is a cataract. But I have never heard of a cataract problem getting so bad so quickly. I will let you know as soon as we hear anything new.
Aug 23, 2004
It appears that Nana has macular degeneration in both eyes now. About three years ago when Nana was first diagnosed, the doctor told her that there was no treatment for the problem. Today she was told that there is treatment that is still experimental. But at least there is some hope now. A will take her back on Wednesday for an office procedure, and to JFK Hospital next Monday for some laser treatment. When Nana told the doctor that she would have to quit her church job, the doctor winked at her and told her not to do that yet.
Introduction
This blog is dedicated to my maternal grandmother, Nana. I had the good fortune to live with my Nana and Pop between ages 4 to 11. They were an amazing couple who first met when they were about 5 years old. Even after 50 years of marriage, they still had regular date nights and held hands often. They did everything together.
I have many small memories of my Nana. She burned hamburgers and just about anything else she tried to cook. She often went on diets consisting of a hamburger patty and cottage cheese, long before anyone had heard of the Atkins Diet. She took mega doses of vitamins and ate grapefruit long before it was faddish. She saw auras. She always had birds - parrots, lovebirds, cockatoos, parakeets. But she got rid of a favorite cockatoo, who had bonded to her, when it bit me to the bone one visit. She taught me to play Rockmaninov on the piano before my hands were big enough for the chords. Most importantly, she taught me it was OK to be quirky and that one's manners were much more important than one's looks.
My Pop lost his battle with COPD and congestive heart failure on November 22, 2003. It is this moment that I believe started my Nana's decline or at least made it more noticeable. She worked full time teaching piano and organ from her home as well as playing music for churches and funeral homes until she began to lose her vision to macular degeneration in 2004. It is not many who can say they had successful careers into their mid 80s.
My Nana had a brief interlude of joy after my Pop's death when she reconnected with Barney, a childhood friend who lost his wife within a month of my Pop's death.
My mother, who lives with Nana, has been emailing me with stories of Nana for the last few years. It is amazing to me how Alzheimer's disease creeps in. The signs have been there for years, looking back at these old emails, but it is really only recently that it has begun to impede her functioning and interactions with others. Unfortunately I am missing some great blocks of time where the emails have been lost. Even so it should be possible to see the slow loss of function and the oddities of behavior.
I have many small memories of my Nana. She burned hamburgers and just about anything else she tried to cook. She often went on diets consisting of a hamburger patty and cottage cheese, long before anyone had heard of the Atkins Diet. She took mega doses of vitamins and ate grapefruit long before it was faddish. She saw auras. She always had birds - parrots, lovebirds, cockatoos, parakeets. But she got rid of a favorite cockatoo, who had bonded to her, when it bit me to the bone one visit. She taught me to play Rockmaninov on the piano before my hands were big enough for the chords. Most importantly, she taught me it was OK to be quirky and that one's manners were much more important than one's looks.
My Pop lost his battle with COPD and congestive heart failure on November 22, 2003. It is this moment that I believe started my Nana's decline or at least made it more noticeable. She worked full time teaching piano and organ from her home as well as playing music for churches and funeral homes until she began to lose her vision to macular degeneration in 2004. It is not many who can say they had successful careers into their mid 80s.
My Nana had a brief interlude of joy after my Pop's death when she reconnected with Barney, a childhood friend who lost his wife within a month of my Pop's death.
My mother, who lives with Nana, has been emailing me with stories of Nana for the last few years. It is amazing to me how Alzheimer's disease creeps in. The signs have been there for years, looking back at these old emails, but it is really only recently that it has begun to impede her functioning and interactions with others. Unfortunately I am missing some great blocks of time where the emails have been lost. Even so it should be possible to see the slow loss of function and the oddities of behavior.
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