It’s been a stressful few months since my last update. The locks, which were installed after my Nana’s errant wandering, allowed some time for my family to make some challenging decisions. My Nana was seen by a team of doctors. Her unsurprising diagnosis was moderate to severe Alzheimer’s disease. While I've been fearful that some accident would cause our family to face Nana's decline, instead my mom has made a decision that is toppling that first domino.
My mom found an apartment and is in the process of moving out. I think she's just had enough. I have no idea how she has endured this long. However, given this major change, I’m not sure how many more updates will be possible once my mom moves out. My mom's sister, A, will move in for a few weeks after my mom moves out. I suspect this experience will determine the future - should an assisted living facility be found for my Nana or should a full time caregiver be brought in. I can't see any other viable alternatives at this point. In spite of her Alzheimer's disease, my Nana's health is otherwise good. This is a very cruel disease.
July 1, 2008
Nana had another adventure today. I left the house at 2:45 to go for therapy. Nana was asleep in her favorite chair in the living room. A2 was due to arrive at 5:00. As she left work, she had a bad feeling about Nana. She came here instead of going home. She arrived at 3:15. She could not find Nana when she came into the house. She found the kitchen door wide open. A2 found Nana lying on the ground in the back yard. A2 is very small. She could not get Nana up from the ground. So she called A to come and help. Together they got Nana back into the house. Nana had hurt her forehead, her hands, and her knees. But basically she is OK. A came back at 6:30 to check on Nana. In a short time Nana was ordering A around.
July 4, 2008
This morning A arrived at about 5:45. She could not find Nana. I had recently heard a sound from K's room, so I told her to check upstairs. She did find her up there, but she was undressed because it was so hot up there. This afternoon A and R came back and put two extra locks on the door. The first one is a hook and eye with a spring clasp. The second device is a plastic door knob that goes over the regular door knob, but must be turned a special way in order to open the door. When A2 came, I showed her how to open the door. Hopefully Nana will not get out doors and fall again, or worse, get into the street. L Avenue is very busy several times a day.
July 14, 2008
The decision that Nana should not be left alone, plus a trip to Australia by A2, has meant that A has been here with Nana often during the past week. Nana has been much happier during that time. She is always happy to see A. Last night when she came into my room to tell me that she wanted to go home, I told her that we were home, and that we did not plan to go out that night. She said OK and went to bed. In the past she has told me the same thing over and over again, sometimes for hours. Last night she just went to bed and stayed there. Seeing more of A has been very good for Nana. It must be difficult for A to fit extra visits into her busy schedule.
July 21, 2008
Twice I have seen Nana try to open the kitchen door now that it has new locks on it. I told Nana that we did not want to go out because it was much too hot. She was very annoyed, but she did go back to her room. I am not sure what would have happened if I had not been there. If she tried to open the door during one of her more lucid periods, she might be successful. But so far the door is holding.
July 25, 2008
Last night when I went to bed, I found an empty packet of dog food on the floor. And I thought, "At least it wasn't cookies this time." Then when M arrived this morning, she discovered that Nana had also given Fluffy a pint of ice cream, a container of fresh berries, and a plastic container of sliced almonds. I do not mind sharing my food with Nana, but I am very unhappy when she gives my food to Fluffy. Nana also spilled something on her bed. M had to strip it completely and wash all the bedclothes. Thankfully Nana was busy inside the house this time.
July 26, 2008
As soon as A left tonight, Nana was on a mission to feed Fluffy. When I told her several times that Fluffy had already had dinner, she would not believe me and became very angry. She finally left the kitchen. Evidently she was just waiting for me to leave the kitchen. First she gave Fluffy one of my sandwich rolls. Fluffy brought it into the living room to show me while she ate it. Then she gave Fluffy one of my fat free ice-cream sandwiches. Fluffy brought that to show me too. Then she brought a raw egg. She was very careful with it and put it on the floor next to my computer. When I next went into the kitchen, the refrigerator door was wide open. Leaving that door open when it is so hot, is not a good thing. I am almost afraid of what I will find when I go into the kitchen to put the egg away. Ah well.....
August 8, 2008
Nana has been confused several days this week. This morning M found her in bed upstairs. At first she did not want to come down stairs. M went back upstairs to get her after about twenty minutes. Then she was willing to come downstairs for breakfast. This evening M took her outside for a while because the weather was nice. Nana did not want to stay long. She is sleeping now.
August 21, 2008
Nana was very confused tonight. She thought that A2 was a man. She said that he was trashing the kitchen and stealing things from the rest of the house. She locked poor Fluffy in her cage because she was following Nana. Fluffy always follows Nana, She wants to be with Nana where ever she goes.
I took a nap. When I awoke and went into the living room, Nana had left her walker next to the dining room table. Then she put a large chair in the pathway so that I was blocked from entering the living room. And Fluffy's water dish was missing from the kitchen. I have not found it yet.
A few months ago I gave Nana a small Teddy bear. At first she wanted to throw it away. Then M talked her into keeping it. A couple of weeks later Saturn sent me a very soft dog. I gave it to Nana. This time she loved the animal at first sight. I would often find her talking to the dog and hugging it. This week I gave her a white bear. She liked it right away too. She kept the animals on a table next to her chair. She called them her family. Yesterday she moved all the animals to a table next to her bed.
September 12, 2008
A took Nana for an evaluation arranged by social services today. It took three hours, and included a social worker, an internist, and a psychiatrist. The diagnosis is moderate to severe Alzheimer’s. But I guess that we knew that all along. Or maybe we all knew except A. Tonight Nana has been looking for Pop and K. She is angry with me because I will not agree that I saw them her. But if I agree that I saw them, then she wants me to find them for her.
September 13, 2008
A has been hiding her head in the sand much longer than I thought possible. Last night she called D to tell her how shocked she was at Nana’s diagnosis. D said that she and C had been trying to tell A the same thing for three years. A still acted shocked when I saw her this morning. Last night Nana kept trying to go upstairs. I was able to stop her as long as I was sitting at my computer. But as soon as I left the room, Nana went upstairs. Evidently she decided to sleep up there because she did not come down until A went up to get her this morning.
September 14, 2008
Yes, I am really looking forward to my new life in [new town]. I have a lot of work to do before I can move, but I am working on it. A is very unlikely to move in with Nana. She rarely stays more than an hour when she does come here. Nana might really be happier in a nursing home. At least she would have other people to talk with there. A thinks that Nana will be happiest here at home. I have never lived alone before. I am looking forward to having a bathroom where no one will come in to see what I am doing, and ask me to tell them about it.
September 20, 2008
A took Nana to see her cardiologist today. He said that she is fine and that he would see her in a year. Later this afternoon, Nana went to have her hair done. When A2 brought her home, she seemed very confused. She kept saying that she wanted to go home. She seems to be most confused when she is tire. She will probably feel better tomorrow.
September 29, 2008
My friend S stopped in during all the chaos to say hello. She is the one who has been urging me for years to move into one of the apartments. A told me yesterday that she plans to move into the house with Nana for two weeks after I move. She hopes to find someone who can live in to stay with Nana through the holidays. After that she is not sure what will happen. She would like Nana to be able to stay in her own house, but that may not be the safest choice for Nana at this point.
October 3, 2008
Everything has been very quiet around here for weeks. I had really gotten used to the new Nana. But last night Nana kept trying to get out of the house to find her car. When I would not help her get out doors, she decided that she had lost her keys. She kept asking me to find her lost keys. This morning she was searching for Pop. This afternoon when I started to go into the living room, I found that the basement door open, and the lights in the basement were on. Today is the first time that Nana has managed to get the basement door open since R put the extra lock on it. Nana was still trying to find Pop when A2 came to take her to the hair dresser. I guess that the quiet time is over.
Friday, October 3, 2008
Monday, June 30, 2008
June 2008
Things are getting worse for my Nana. The wandering has increased. My Nana is starting to injure herself in the night, so far not in an acute way, but worrisome nonetheless. Emails between family members, in response to my mom's updates, are getting a bit tense (not shown here this month). As you can see from today's (June 30) email, this time the police found Nana wandering in the night. Her behavior is becoming a bit more aberrant each day - dirty underwear in the silverware drawer - yes funny but also truly sad. I don't want to remember her this way.
June 5, 2008
Last night while I was sitting at my computer, Nana tried to go upstairs three times. Since my walker was blocking the stairs, I was able to convince her that we no longer went upstairs. She insisted that someone was up stairs. At first it was a party. Then it was a girl that she needed to take care of right away. The last time it was a man that she needed to see. There is always a price for stopping Nana from doing what she wants to do.
When I went into the kitchen, I found that she had opened a new half gallon of milk with a steak knife. There was milk all over the counter and on the floor. There was a plastic cup of milk on the floor full of milk, so obviously she was feeding Fluffy. In all my life, I have never seen Nana drink milk. She also fed Fluffy my potato salad. This morning M told me that she had also fed Fluffy the ham that M had bought to put in Nana's omelet. M and I are running out of places to hide things.
Nana slept most of the day. She looked really tired when A2 gave her some dinner. She finally had to feed her the dinner. When she put her to bed, Nana was complaining that her shoulder hurt. I think that when she fell last week, she landed on her shoulder. So she gave her some Tylenol and rubbed some salve on her shoulder. Perhaps she will feel better tomorrow.
June 11, 2008
Nana was happy last night and tonight because A2 just sat and talked with her. It was much too hot for anything else. But after A2 went home, Nana became very confused. She was looking for Pop. She left her walker in front of the commode. She forgot to flush the commode. She wanted me to take her somewhere else, even though we have been having thunder storms tonight.
A few years ago when Nana would say the same thing several times, I would say that she had a bee in her bonnet. Later when she would say the same thing for an hour or more, I would say that she was obsessed. Last week A came up with a new description of Nana mood and actions. She said that she was on a mission. Sometimes her missions are to get outdoors. Sometimes her missions are to scatter her clothes all over the house. Tonight her mission appears to be avoiding sleep.
June 20, 2008
T, our next door neighbor rescued Nana again last night. T called me at 12:30 AM. She said that she had Nana at the door. She told me that her dog Cosmo would not leave her alone last night. She finally went out side and found Nana. So we have both T and Cosmo to thank. When she came inside, I asked Nana where she had been. Nana said that she went out into the back yard and then she got lost. She had her walker with her this time, so I do not think that she fell. But M found a bruise on the back of Nana's hand this morning. We can't figure out how that happened. I am just thankful that T found Nana and brought her home.
June 28, 2008
Nana has found a new place to hide things. This morning M found a pair of soiled underwear in the kitchen in the silverware drawer. She washed everything in the drawer.
On the good news side, Nana got her hair done today. Then A2 took her out to the Scotchwood Diner for dinner. A1 said that she had a good time.
June 30, 2008
This morning I awoke at 6:50 AM because someone was knocking on the kitchen door. It was the police. They found Nana wandering around the front yard.
Someone had called them when they saw Nana sitting on the front steps. The police called the rescue squad and they took her to the hospital. Fortunately Muhlenberg Hospital is still open. I called A to let her know that Nana was on the way to the hospital. A followed Nana and brought her home. She said that she was not injured, just covered with dirt. M thought that perhaps she had been digging in the garden near the front door where A2 had planted some flowers a few days ago. Nana is sitting in the living room now in her favorite chair. She is sleeping most of the time, but she has talked to me several times when she awakens.
I am not sure what time Nana went outside. I was in the living room between two and three having a very late dinner. I can't hear the alarm on the door from the living room. When I went to bed, Nana's walker was blocking the way near the basement stairs. It was facing the living room. Nana often leaves her walker blocking the area where I need to walk. When I finally got into the kitchen, the kitchen door was open. Nana opens that door every time she enters the kitchen. It did not occur to me that she was outside because the walker was in the house. The last time she went outside during the night, she took the walker with her. In the future, the walker will not indicate where she is. Nana had even put her new red quilt on her bed, so it appeared that she was asleep.
I am thankful that the police found her before she got into the street. L Avenue is busy even at six AM.
June 5, 2008
Last night while I was sitting at my computer, Nana tried to go upstairs three times. Since my walker was blocking the stairs, I was able to convince her that we no longer went upstairs. She insisted that someone was up stairs. At first it was a party. Then it was a girl that she needed to take care of right away. The last time it was a man that she needed to see. There is always a price for stopping Nana from doing what she wants to do.
When I went into the kitchen, I found that she had opened a new half gallon of milk with a steak knife. There was milk all over the counter and on the floor. There was a plastic cup of milk on the floor full of milk, so obviously she was feeding Fluffy. In all my life, I have never seen Nana drink milk. She also fed Fluffy my potato salad. This morning M told me that she had also fed Fluffy the ham that M had bought to put in Nana's omelet. M and I are running out of places to hide things.
Nana slept most of the day. She looked really tired when A2 gave her some dinner. She finally had to feed her the dinner. When she put her to bed, Nana was complaining that her shoulder hurt. I think that when she fell last week, she landed on her shoulder. So she gave her some Tylenol and rubbed some salve on her shoulder. Perhaps she will feel better tomorrow.
June 11, 2008
Nana was happy last night and tonight because A2 just sat and talked with her. It was much too hot for anything else. But after A2 went home, Nana became very confused. She was looking for Pop. She left her walker in front of the commode. She forgot to flush the commode. She wanted me to take her somewhere else, even though we have been having thunder storms tonight.
A few years ago when Nana would say the same thing several times, I would say that she had a bee in her bonnet. Later when she would say the same thing for an hour or more, I would say that she was obsessed. Last week A came up with a new description of Nana mood and actions. She said that she was on a mission. Sometimes her missions are to get outdoors. Sometimes her missions are to scatter her clothes all over the house. Tonight her mission appears to be avoiding sleep.
June 20, 2008
T, our next door neighbor rescued Nana again last night. T called me at 12:30 AM. She said that she had Nana at the door. She told me that her dog Cosmo would not leave her alone last night. She finally went out side and found Nana. So we have both T and Cosmo to thank. When she came inside, I asked Nana where she had been. Nana said that she went out into the back yard and then she got lost. She had her walker with her this time, so I do not think that she fell. But M found a bruise on the back of Nana's hand this morning. We can't figure out how that happened. I am just thankful that T found Nana and brought her home.
June 28, 2008
Nana has found a new place to hide things. This morning M found a pair of soiled underwear in the kitchen in the silverware drawer. She washed everything in the drawer.
On the good news side, Nana got her hair done today. Then A2 took her out to the Scotchwood Diner for dinner. A1 said that she had a good time.
June 30, 2008
This morning I awoke at 6:50 AM because someone was knocking on the kitchen door. It was the police. They found Nana wandering around the front yard.
Someone had called them when they saw Nana sitting on the front steps. The police called the rescue squad and they took her to the hospital. Fortunately Muhlenberg Hospital is still open. I called A to let her know that Nana was on the way to the hospital. A followed Nana and brought her home. She said that she was not injured, just covered with dirt. M thought that perhaps she had been digging in the garden near the front door where A2 had planted some flowers a few days ago. Nana is sitting in the living room now in her favorite chair. She is sleeping most of the time, but she has talked to me several times when she awakens.
I am not sure what time Nana went outside. I was in the living room between two and three having a very late dinner. I can't hear the alarm on the door from the living room. When I went to bed, Nana's walker was blocking the way near the basement stairs. It was facing the living room. Nana often leaves her walker blocking the area where I need to walk. When I finally got into the kitchen, the kitchen door was open. Nana opens that door every time she enters the kitchen. It did not occur to me that she was outside because the walker was in the house. The last time she went outside during the night, she took the walker with her. In the future, the walker will not indicate where she is. Nana had even put her new red quilt on her bed, so it appeared that she was asleep.
I am thankful that the police found her before she got into the street. L Avenue is busy even at six AM.
Sunday, June 29, 2008
From my mantle
This picture of my Nana & Pop is my favorite. This is how I remember them, always. This is the picture that I've have framed on my mantle. They were a team, always holding hands. When my mom emails about my Nana going to the beauty salon to have her hair done, this is the style, unchanged through the decades. She went every week to have it styled & slept in a hair covering to keep it fresh until the next visit. My Nana is thin in this picture. When my Pop was diagnosed with emphysema, my Nana proposed that she would lose 50 pounds if he would quit smoking his pipe. They both did. Long before the Atkins diet was popular I remember my Nana's breakfast or lunch being a hamburger patty, some cottage cheese, black coffee, grapefruit juice and a mound of vitamins.
Saturday, June 28, 2008
Nana & Pop
I recently bought a scanner so that I could convert old pictures to digital. The first picture I scanned was of my Nana & Pop. I'm guessing that this picture is from the mid 1980s. I'm not sure who took the picture, clearly someone sitting in the back seat of the car. This is how I remember them - always touching. Do you see the twinkle in my Pop's eye? He did not talk much but he always had the twinkle. I have another picture of them that I like more, but I need to take it out of the frame to scan it.
Sunday, June 8, 2008
April & May 2008
These last two months have been difficult for my family. My Nana continues to get worse. The family continues to fight about what care is appropriate & necessary. As you can see from the past two months, some days pass quietly with nothing of interest except my Nana's weekly trip to the beauty parlor. She's kept this schedule for 70 years. I hope the familiarity of it comforts here. Other days are not so simple. There has been more wandering, more disrobing, more falling - nothing life threatening yet but a few close calls.
In the background of this slow decline, my uncle K learned that he will need triple bypass surgery so that he will be fit enough to qualify to receive a kidney transplant. He will have surgery Monday. I think we are all more focused on him at this time. His situation is more urgent. I love you K.
April 5
A took Nana to get her hair done today because she had missed two appointments. Nana seems to feel just fine, but she is sleeping a little bit more than usual.
April 12
A2 picked Nana up at 3:30 to take her to get her hair done. Poor A2 was still here at 9:00 because Nana kept getting upset when she tried to leave. A2 really gave above and beyond the call of duty today. Nana seemed to be OK tonight after A2 finally went home.
April 18
Spring is really here too. It was 85 degrees today when I drove home from the dentist. All the trees and shrubs are blooming. Many people are sneezing. But it does look beautiful. I need to arrange for cleanup of the yard. Many ice storms this winter brought down many branches, especially in the back yard.
Nana is OK. She had her hair done today. Going out makes her very tired. She went to bed at about seven o’clock. The other night she hid not just the phone, but also the console with the answering machine. She hid it behind her recliner. It took me a long time to find it. Then at 5:00 AM I heard her footsteps in Kip’s room. I could not get upstairs to check on her. When M came in the morning, I asked her to check upstairs. This time it appears that she just left doors open. She was downstairs by the time M came.
When A2 left tonight, she told me that she was not coming tomorrow because she is going to New York with some people from her church to see the Pope. She is a very devout Catholic.
April 21
Today I went into the living room to eat my lunch as I usually do. Nana was asleep in her favorite chair. After a while she awoke and walked out of the room. She often leaves the room when I arrive. A short time later, I heard someone call my name. I answered and invited her into the living room. It was our next door neighbor T.A. She told me that Nana was outside trying to get into the car. T.A. went outside to stay with Nana, and I went to unlock the studio door. When I opened the door, I saw that Nana had her walker. I do not know how she got it down the porch steps without falling. At any rate, T.A. helped her to come inside. Then Nana said that she would go lie down. When T.A. left, I relocked the door and went back to the living room. Then T.A. called on the telephone. She said that after she saw Nana try to get into the car, she walked down the driveway and across the street. Then she crossed the street again to return to our yard. That is when T.A. came over. She said that many cars needed to stop to let Nana cross the street. She did not want to tell me when Nana was around. Thank goodness T.A. saw her and brought her back inside.
Tonight when A2 was here, she found that Nana had opened the dog's door and left it open. She closed it again and locked it.
When I called A, she said that Nana could not afford to have someone here any more hours that she already has. Maybe Nana will decide to stay in doors now.
April 22 – from my cousin D whose husband works in assisted living
I talked to C (her husband) about Nana’s wandering. He said it’s very normal that as the weather improves, the wandering will increase. He was very clear that this behavior will not resolve itself. It’s a typical urge in dementia patients and is part of the normal progression of the disease.
My opinion is that Nana needs to have 24 hour care or needs to go to a facility. However, those decisions are up to K, J and A.
April 27
Evidently D stopped at A’s house on her way to Connecticut for the weekend. She read A the riot act for not putting Nana in a nursing home. A was ready to send someone from a very expensive nursing home to evaluate Nana for admission. I suggested that she get estimates from several nursing homes in the area before she does anything else. It is a difficult situation no matter how you look at it. I am sure that A keeps getting Nana's hair dyed so that she can pretend that Nana is just the same as she always was.
Note: I'm not sure what the proverbial straw will be but it seems like it is coming soon. These "scary" days are starting to appear more frequently.
May 10
I have an appointment to meet with the manager of the Westfield Senior Housing complex to present my financial information. Suddenly my number is five. When I asked if that meant an apartment would become available in about a year, she said no, about six months. I really think that Nana might be ready for a change of living arrangements by then. She often complains that there is no one to talk to now. She often carries on conversations with people who are not there. She might just be happier in a place where there are more people for her to interact with on a daily basis.
Note: To me, this note, more than any of the others exemplifies how dire this situation is. My mom has NEVER lived alone. It was never part of her life plan. And yet, here she is looking forward to the day when she will have her own apartment in a few short months.
May 11
Nana had a good day today. First R, A3 and E came to visit. Then K called her. Then A came to visit and to fix her dinner. She is sleeping now. Actually she seems to be sleeping more than usual lately. But the other night she stayed up most of the night. For more than two hours, she carried on a conversation with someone that only she could see. She often complains that she has no one to talk to now. Maybe her private conversation is her way of compensating.
May 12
Nana is up late tonight. She has come in twice to ask me how she can get to the movies tonight. When I told her that it was after midnight and rainy, she said that she was going to bed. Then she came back a few minutes later asking the same question
May 16
Nana keeps adding to her list of things that she is feeding poor Fluffy. In addition to cookies, she has given her yogurt, and this week, she added coffee. A couple of days ago, M found Kleenex all over the floor when she arrived. There was even more Kleenex on the floor this morning. She told M that she did not do it. But whoever did it, we are now down two new boxes of Kleenex. We are running out of places to hide things. I have put away all the scissors that I could find. And M and I hid all of the super-sharp knives that Pop had in the kitchen. Today Nana is getting her hair done as usual on Friday afternoon. Today she is also supposed to have a pedicure and a manicure. She will look nice when she comes home, but she will probably be tired.
May 18
This week I visited the Westfield Senior Housing to have a tour of the place. It is a beautiful place, inside and out. There are many services available. My only complaint is that the apartments are very small. But the people who run the place are very nice. And all the residents that I met were very welcoming. I even met a woman with whom I worked at All-state, more than fifteen years ago. All in all, my visit was very positive.
May 26
Nana has been riding a roller coaster this week, but today was calm. Piper came with A to fix Nana's dinner. Fluffy was a bit insulted about Piper's visit, but the rest of us were glad to see her.
Last night A2 took Nana out to the Scotch Plains Diner. Nana once went there often. Several people who work there remembered her and gave her a warm welcome. Friday Nana went to get her hair done. She was very tired when she came home, and a bit confused. On Thursday she slept most of the day because she had been up all night and very agitated. She was sure that someone was conspiring against her at night. In the morning she wanted to call the police to have me taken away because she did not like me. Thank goodness the week ended better than it began.
May 30
Last night Nana was up most of the night. At 3:00 AM Fluffy came into the kitchen and was barking at the door. I got up and opened the kitchen door. I could not see anyone on the porch. But Fluffy kept barking. So I went into my room to get my light weight walker. The walker with four wheels is too heavy for me to take on the porch. Then I heard someone knocking on the outside door. Just as I was about to return to the kitchen, Nana came in from the porch and went into her room without even looking at me. She was wearing just her underwear. After that, it was quiet, so I thought that she had gone to sleep. But she was busy the rest of the night, just busy very quietly.
When M arrived in the morning, she found clothes scattered all over the place. After M gave Nana a shower, Nana wanted to wear white pants. They were too small. Then M recognized them as pants that she had put upstairs weeks ago because they were too small. When M went upstairs, there were lights on and clothes out of place. Then she checked the porch, and she found several of Nana's coats that had been hanging on the coat rack in the studio.
After M left, I expected that Nana would sleep for a few hours the way she usually does. But she came into my room and began to ask me questions about all the people who had come to the house and taken things. Then she got mad at me when I tried to tell her that there was no one else in the house. Then while I was taking a shower, she came into the bathroom demanding to know who had told me that I could take a shower. She was angry because I was taking a shower. Usually when she has been up all night, she sleeps most of the next day. This time it was different. Maybe she will sleep tonight.
Note: I know it's wrong but these stories always make me laugh even as I cry inside. You can try to look for the logic in Nana's actions but really there is none to be found.
May 31
Late last night I found Nana sleeping on the floor. It took me five calls to wake her up to ask her why she was sleeping on the floor. She said that she did not know. I asked her if she was hurt. She said that she was not hurt. I tried to get her to sit up, but she said that she would be sick if she did. So I went to call A. Thank goodness she came right over. She told Alice the same things. A did discover that she had been sick in a pillow case. But we both agreed that she could stay on the floor if she really wanted to sleep there.
At about three AM, I went into the bathroom and discovered that Nana was no longer on the floor. But Fluffy was with her, so I decided to let her sleep where ever she was. A came again at seven. She found Nana sitting on the couch in her studio. She noticed that one finger was black and blue. Nana said that it did not hurt. She was able to get Nana into bed that time. When M came, I told her what we knew about Nana's night. We decided that she should have Gatorade instead of coffee. She ate her breakfast as usual. M noticed that Nana's lip was swollen, and there was a little bit of blood on her knees. So we think that she must have fallen. She has been sleeping most of the day. But since she had not slept much for two days, sleep is probably good for her. I will ask A2 to check her when she comes tonight.
In the background of this slow decline, my uncle K learned that he will need triple bypass surgery so that he will be fit enough to qualify to receive a kidney transplant. He will have surgery Monday. I think we are all more focused on him at this time. His situation is more urgent. I love you K.
April 5
A took Nana to get her hair done today because she had missed two appointments. Nana seems to feel just fine, but she is sleeping a little bit more than usual.
April 12
A2 picked Nana up at 3:30 to take her to get her hair done. Poor A2 was still here at 9:00 because Nana kept getting upset when she tried to leave. A2 really gave above and beyond the call of duty today. Nana seemed to be OK tonight after A2 finally went home.
April 18
Spring is really here too. It was 85 degrees today when I drove home from the dentist. All the trees and shrubs are blooming. Many people are sneezing. But it does look beautiful. I need to arrange for cleanup of the yard. Many ice storms this winter brought down many branches, especially in the back yard.
Nana is OK. She had her hair done today. Going out makes her very tired. She went to bed at about seven o’clock. The other night she hid not just the phone, but also the console with the answering machine. She hid it behind her recliner. It took me a long time to find it. Then at 5:00 AM I heard her footsteps in Kip’s room. I could not get upstairs to check on her. When M came in the morning, I asked her to check upstairs. This time it appears that she just left doors open. She was downstairs by the time M came.
When A2 left tonight, she told me that she was not coming tomorrow because she is going to New York with some people from her church to see the Pope. She is a very devout Catholic.
April 21
Today I went into the living room to eat my lunch as I usually do. Nana was asleep in her favorite chair. After a while she awoke and walked out of the room. She often leaves the room when I arrive. A short time later, I heard someone call my name. I answered and invited her into the living room. It was our next door neighbor T.A. She told me that Nana was outside trying to get into the car. T.A. went outside to stay with Nana, and I went to unlock the studio door. When I opened the door, I saw that Nana had her walker. I do not know how she got it down the porch steps without falling. At any rate, T.A. helped her to come inside. Then Nana said that she would go lie down. When T.A. left, I relocked the door and went back to the living room. Then T.A. called on the telephone. She said that after she saw Nana try to get into the car, she walked down the driveway and across the street. Then she crossed the street again to return to our yard. That is when T.A. came over. She said that many cars needed to stop to let Nana cross the street. She did not want to tell me when Nana was around. Thank goodness T.A. saw her and brought her back inside.
Tonight when A2 was here, she found that Nana had opened the dog's door and left it open. She closed it again and locked it.
When I called A, she said that Nana could not afford to have someone here any more hours that she already has. Maybe Nana will decide to stay in doors now.
April 22 – from my cousin D whose husband works in assisted living
I talked to C (her husband) about Nana’s wandering. He said it’s very normal that as the weather improves, the wandering will increase. He was very clear that this behavior will not resolve itself. It’s a typical urge in dementia patients and is part of the normal progression of the disease.
My opinion is that Nana needs to have 24 hour care or needs to go to a facility. However, those decisions are up to K, J and A.
April 27
Evidently D stopped at A’s house on her way to Connecticut for the weekend. She read A the riot act for not putting Nana in a nursing home. A was ready to send someone from a very expensive nursing home to evaluate Nana for admission. I suggested that she get estimates from several nursing homes in the area before she does anything else. It is a difficult situation no matter how you look at it. I am sure that A keeps getting Nana's hair dyed so that she can pretend that Nana is just the same as she always was.
Note: I'm not sure what the proverbial straw will be but it seems like it is coming soon. These "scary" days are starting to appear more frequently.
May 10
I have an appointment to meet with the manager of the Westfield Senior Housing complex to present my financial information. Suddenly my number is five. When I asked if that meant an apartment would become available in about a year, she said no, about six months. I really think that Nana might be ready for a change of living arrangements by then. She often complains that there is no one to talk to now. She often carries on conversations with people who are not there. She might just be happier in a place where there are more people for her to interact with on a daily basis.
Note: To me, this note, more than any of the others exemplifies how dire this situation is. My mom has NEVER lived alone. It was never part of her life plan. And yet, here she is looking forward to the day when she will have her own apartment in a few short months.
May 11
Nana had a good day today. First R, A3 and E came to visit. Then K called her. Then A came to visit and to fix her dinner. She is sleeping now. Actually she seems to be sleeping more than usual lately. But the other night she stayed up most of the night. For more than two hours, she carried on a conversation with someone that only she could see. She often complains that she has no one to talk to now. Maybe her private conversation is her way of compensating.
May 12
Nana is up late tonight. She has come in twice to ask me how she can get to the movies tonight. When I told her that it was after midnight and rainy, she said that she was going to bed. Then she came back a few minutes later asking the same question
May 16
Nana keeps adding to her list of things that she is feeding poor Fluffy. In addition to cookies, she has given her yogurt, and this week, she added coffee. A couple of days ago, M found Kleenex all over the floor when she arrived. There was even more Kleenex on the floor this morning. She told M that she did not do it. But whoever did it, we are now down two new boxes of Kleenex. We are running out of places to hide things. I have put away all the scissors that I could find. And M and I hid all of the super-sharp knives that Pop had in the kitchen. Today Nana is getting her hair done as usual on Friday afternoon. Today she is also supposed to have a pedicure and a manicure. She will look nice when she comes home, but she will probably be tired.
May 18
This week I visited the Westfield Senior Housing to have a tour of the place. It is a beautiful place, inside and out. There are many services available. My only complaint is that the apartments are very small. But the people who run the place are very nice. And all the residents that I met were very welcoming. I even met a woman with whom I worked at All-state, more than fifteen years ago. All in all, my visit was very positive.
May 26
Nana has been riding a roller coaster this week, but today was calm. Piper came with A to fix Nana's dinner. Fluffy was a bit insulted about Piper's visit, but the rest of us were glad to see her.
Last night A2 took Nana out to the Scotch Plains Diner. Nana once went there often. Several people who work there remembered her and gave her a warm welcome. Friday Nana went to get her hair done. She was very tired when she came home, and a bit confused. On Thursday she slept most of the day because she had been up all night and very agitated. She was sure that someone was conspiring against her at night. In the morning she wanted to call the police to have me taken away because she did not like me. Thank goodness the week ended better than it began.
May 30
Last night Nana was up most of the night. At 3:00 AM Fluffy came into the kitchen and was barking at the door. I got up and opened the kitchen door. I could not see anyone on the porch. But Fluffy kept barking. So I went into my room to get my light weight walker. The walker with four wheels is too heavy for me to take on the porch. Then I heard someone knocking on the outside door. Just as I was about to return to the kitchen, Nana came in from the porch and went into her room without even looking at me. She was wearing just her underwear. After that, it was quiet, so I thought that she had gone to sleep. But she was busy the rest of the night, just busy very quietly.
When M arrived in the morning, she found clothes scattered all over the place. After M gave Nana a shower, Nana wanted to wear white pants. They were too small. Then M recognized them as pants that she had put upstairs weeks ago because they were too small. When M went upstairs, there were lights on and clothes out of place. Then she checked the porch, and she found several of Nana's coats that had been hanging on the coat rack in the studio.
After M left, I expected that Nana would sleep for a few hours the way she usually does. But she came into my room and began to ask me questions about all the people who had come to the house and taken things. Then she got mad at me when I tried to tell her that there was no one else in the house. Then while I was taking a shower, she came into the bathroom demanding to know who had told me that I could take a shower. She was angry because I was taking a shower. Usually when she has been up all night, she sleeps most of the next day. This time it was different. Maybe she will sleep tonight.
Note: I know it's wrong but these stories always make me laugh even as I cry inside. You can try to look for the logic in Nana's actions but really there is none to be found.
May 31
Late last night I found Nana sleeping on the floor. It took me five calls to wake her up to ask her why she was sleeping on the floor. She said that she did not know. I asked her if she was hurt. She said that she was not hurt. I tried to get her to sit up, but she said that she would be sick if she did. So I went to call A. Thank goodness she came right over. She told Alice the same things. A did discover that she had been sick in a pillow case. But we both agreed that she could stay on the floor if she really wanted to sleep there.
At about three AM, I went into the bathroom and discovered that Nana was no longer on the floor. But Fluffy was with her, so I decided to let her sleep where ever she was. A came again at seven. She found Nana sitting on the couch in her studio. She noticed that one finger was black and blue. Nana said that it did not hurt. She was able to get Nana into bed that time. When M came, I told her what we knew about Nana's night. We decided that she should have Gatorade instead of coffee. She ate her breakfast as usual. M noticed that Nana's lip was swollen, and there was a little bit of blood on her knees. So we think that she must have fallen. She has been sleeping most of the day. But since she had not slept much for two days, sleep is probably good for her. I will ask A2 to check her when she comes tonight.
Sunday, April 13, 2008
March 2008
The days and months are beginning to flow one into the other. There are peaks and valleys but the slow decline continues. I met recently with Anne Togher, who founded Toughers, an online resource for family caregivers. I spoke to her briefly about my Nana and my family. Of note, it is so easy for families and caregivers to cling to the good days. Unfortunately the good days are not signs of recovery. They are also not a good place to measure the baseline functioning of a person; however, it is common apparently for all families to cling to the good days, to think that knowing your name 1 day of 10 is somehow a sign that the memory is recovering. As with all things, there are peaks and valleys, but the trend is sadly down.
March 5
Nana and I were up all night last night. I finally fell asleep at 7:00 AM. An hour later, I awoke to find Nana in my room trying to take my walker. She said that she could not find hers. All during the night, she kept opening the kitchen door, and leaving it open. Then I would have to get up to close the door and lock it again.
During the day today, Nana peeled three bananas and put them back in the serving dish. She did not want to eat them, she just wanted to peel them.
Tonight when M came to fix her dinner, Nana was very confused. She kept talking about the people upstairs. Maybe tomorrow will be better.
March 7
Nana was up all night again. She kept coming into my room and trying to take my walker. When M arrived, she had trouble getting in the door because Nana had covered the floor with boxes and other things. M had to wash Nana's new white quilt again. This time she had spilled coffee on it.
But otherwise, A2 came back today and took Nana to the hair dresser. Nana called me Judy when she came home. I do not know if Nana was having a good day, or if A2 told her who I was when they came home. Either way, it was quite a surprise to me. Nana usually thinks that I am the hired help, or else a classmate who is trying to steal her boyfriend. Hearing her call me Judy was a nice change.
March 16
This evening Nana and I were sitting in the living room. She slept most of the time. She did speak with her friend R for a few moments when she called. About ten minutes later, I saw Nana remove her long pants and under pants. I asked he what she was doing. She said that she needed to go to the bathroom. I told her where to find the bathroom, and I suggested that she put her pants back on before she tried to walk.
Nana also lost her walker again today. I do not know where she put it, but she finally found it again late this evening.
Note: I found this story so completely funny and yet sad at the same time. I replied to my mom about it for more information and to see how she was holding up. My mom is (and has been for the last 2 years or so) on a waiting list for an apartment in a senior complex where her friend works. I also asked how she was moving in the queue as about a year ago she was 100 or so and more recently was up to about 20.
March 17
You are right. It would be funny if it were not so sad.
Everything is in a holding pattern right now. A was here tonight. She said that D was having a birthday party for four of us in two weeks. She has decided that Nana should not attend. She said that Nana did not like the long ride to and from D’s house. I am afraid that A does not like having to spend that much time with Nana.
My number is 17. At this point, seventeen people must die before there is an apartment for me. Up to now, people often found other places to live and took their names off the list. But S told me last week that they are looking for land to build more senior housing. In Westfield, that may take a while. All over Westfield people are buying old houses, tearing them down, and building McMansions. But with the real estate market in trouble, anything is possible.
March 26
A took Nana to Medemerge last night because she had been wheezing for a couple of days. She has pneumonia, but she had no fever. Today she says that she feels fine. But she has begun to take an antibiotic and a spray for her breathing. A3 (my cousin R's girlfriend) came to visit to check on Nana. She brought Piper (another loyal dog) with her. Nana always is happy to see Piper.
A3 told Nana that she looks fine. Nana is sleeping now after the excitement of visitors.
Note: So often it is something like pneumonia that causes people with Alzheimer's disease to die. It's good they caught this early.
March 29
Nana is feeling better each day. She had a slight fever last night, but Tylenol sent it back to normal. Today she had no fever. Tonight she did not want to take her medicine because she said that it tasted terrible. It may be difficult to get her to take the medicine for the rest of the days required, but we will do our best.
March 31
I spoke too soon. Yesterday afternoon Nana was playing the piano when I went to take a shower. Then she opened the bathroom door, told me that she was sick, and threw up all over the floor. She was sick several more times during the next few hours. A came to the rescue. The R and A3 came to check on Nana too. She slept until 6:00 AM. Then she woke me up to say that she was starving because no one had fed her for two days. So I gave her a yogurt. When M came at 8:00 AM she fixed Nana eggs and toast and Gatorade. The only medicine we gave her was Antivert. The pharmacist told A not to give her any more of the antibiotic. A plans to take her to see another doctor tomorrow.
R stopped by this afternoon and got Nana to eat a little bit of chicken noodle soup. At R’s suggestion we gave her another Antivert. We hope that she continues to feel better.
March 5
Nana and I were up all night last night. I finally fell asleep at 7:00 AM. An hour later, I awoke to find Nana in my room trying to take my walker. She said that she could not find hers. All during the night, she kept opening the kitchen door, and leaving it open. Then I would have to get up to close the door and lock it again.
During the day today, Nana peeled three bananas and put them back in the serving dish. She did not want to eat them, she just wanted to peel them.
Tonight when M came to fix her dinner, Nana was very confused. She kept talking about the people upstairs. Maybe tomorrow will be better.
March 7
Nana was up all night again. She kept coming into my room and trying to take my walker. When M arrived, she had trouble getting in the door because Nana had covered the floor with boxes and other things. M had to wash Nana's new white quilt again. This time she had spilled coffee on it.
But otherwise, A2 came back today and took Nana to the hair dresser. Nana called me Judy when she came home. I do not know if Nana was having a good day, or if A2 told her who I was when they came home. Either way, it was quite a surprise to me. Nana usually thinks that I am the hired help, or else a classmate who is trying to steal her boyfriend. Hearing her call me Judy was a nice change.
March 16
This evening Nana and I were sitting in the living room. She slept most of the time. She did speak with her friend R for a few moments when she called. About ten minutes later, I saw Nana remove her long pants and under pants. I asked he what she was doing. She said that she needed to go to the bathroom. I told her where to find the bathroom, and I suggested that she put her pants back on before she tried to walk.
Nana also lost her walker again today. I do not know where she put it, but she finally found it again late this evening.
Note: I found this story so completely funny and yet sad at the same time. I replied to my mom about it for more information and to see how she was holding up. My mom is (and has been for the last 2 years or so) on a waiting list for an apartment in a senior complex where her friend works. I also asked how she was moving in the queue as about a year ago she was 100 or so and more recently was up to about 20.
March 17
You are right. It would be funny if it were not so sad.
Everything is in a holding pattern right now. A was here tonight. She said that D was having a birthday party for four of us in two weeks. She has decided that Nana should not attend. She said that Nana did not like the long ride to and from D’s house. I am afraid that A does not like having to spend that much time with Nana.
My number is 17. At this point, seventeen people must die before there is an apartment for me. Up to now, people often found other places to live and took their names off the list. But S told me last week that they are looking for land to build more senior housing. In Westfield, that may take a while. All over Westfield people are buying old houses, tearing them down, and building McMansions. But with the real estate market in trouble, anything is possible.
March 26
A took Nana to Medemerge last night because she had been wheezing for a couple of days. She has pneumonia, but she had no fever. Today she says that she feels fine. But she has begun to take an antibiotic and a spray for her breathing. A3 (my cousin R's girlfriend) came to visit to check on Nana. She brought Piper (another loyal dog) with her. Nana always is happy to see Piper.
A3 told Nana that she looks fine. Nana is sleeping now after the excitement of visitors.
Note: So often it is something like pneumonia that causes people with Alzheimer's disease to die. It's good they caught this early.
March 29
Nana is feeling better each day. She had a slight fever last night, but Tylenol sent it back to normal. Today she had no fever. Tonight she did not want to take her medicine because she said that it tasted terrible. It may be difficult to get her to take the medicine for the rest of the days required, but we will do our best.
March 31
I spoke too soon. Yesterday afternoon Nana was playing the piano when I went to take a shower. Then she opened the bathroom door, told me that she was sick, and threw up all over the floor. She was sick several more times during the next few hours. A came to the rescue. The R and A3 came to check on Nana too. She slept until 6:00 AM. Then she woke me up to say that she was starving because no one had fed her for two days. So I gave her a yogurt. When M came at 8:00 AM she fixed Nana eggs and toast and Gatorade. The only medicine we gave her was Antivert. The pharmacist told A not to give her any more of the antibiotic. A plans to take her to see another doctor tomorrow.
R stopped by this afternoon and got Nana to eat a little bit of chicken noodle soup. At R’s suggestion we gave her another Antivert. We hope that she continues to feel better.
Sunday, March 23, 2008
January & February 2008
The daily emails have dwindled. It's amazing what can be adapted to. It's not that anything has improved. For example, naked 90 year old roams neighborhood at night - positively ordinary. The slow decline of my Nana continues, but the urgency about her condition appears to have abated. Unfortunately our family learned of more pressing medical matters. My Nana's youngest child, my uncle K, recently shared he has end stage renal failure. My Nana just turned 90, so her decline is somewhat acceptable, expected maybe. My uncle K though is far too young to be facing a central line and dialysis three times a week. I'm somewhat glad that my Nana has lost touch with reality. This would break her.
January 1
On Sunday night Nana was restless. Finally at 4:30 AM I thought that she had settled down, so I went to sleep. When M came in at 8:00 AM, she told me that Fluffy was vomiting all over the place. There was evidence that Nana had fed Fluffy lots of cookies and also egg salad. M cleaned everything up, gave Nana a shower because she had come into contact with Fluffy's illness, and then she gave Fluffy lots of water and ice cubes to chew on. She suggested that I not feed Fluffy her regular dinner until late in the day. Fluffy seems to have recovered, thank goodness.
Last night Nana went outside at 3:00 AM. When she came back inside, I went into the kitchen to close and lock the door again. That is when I noticed that the cellar door was open. The basement lights were on, and Nana's walker was by the door. I waited for her to come back upstairs, but she came in from the living room. So I got her to close the basement door, and I went back to bed. She came into my room at 4:30 AM and told me that I needed to go into the basement because her clothes were down there. I explained that I could not climb the stairs, but that A could check when she came to fix her breakfast.
When A arrived, Nana said that she could not find the quilt that she uses in her chair. Alice searched, but could not find it. I suggested that she try the porch because Nana had been out there. The quilt was not on the porch. A finally found the quilt outdoors on the side walk. She also found Nana's bathrobe, her blouse, and her sweater. A put those things in the washing machine. I was sorry that Nana was so confused, but I am glad that A could see some of the problems that we have each day.
Nana slept most of today. A had trouble waking her up tonight to eat her dinner. Once A left, Nana went back to sleep again. I hope that does not mean that she will be wandering around again tonight.
January 10
It has been several days since I have written because things have been rather quiet here. But today Nana was agitated again. She kept going out on the porch and leaving the door open. She also did something to the porch door so that it would not close. One time she left her walker in the doorway to keep the outside door open. When M came, she was able to get the door closed again.
On the good news side, R came tonight, and he was able to get Nana to play the piano for a while.
The house is quiet at the moment.
January 15
Tonight Nana was certain that Fluffy was not her dog, but a strange dog that had entered the house. For more than an hour I kept trying to convince her that Fluffy really was her dog. Then she wanted to wake her up to take her outside to go to the bathroom. I finally gave up trying to get her to leave the poor dog alone. Then she went into her room. Devoted Fluffy followed her. Ten minutes later Nana told me that SHE had put Fluffy outside, and now she would not come back inside. She said that I needed to get Fluffy to come into the house. I told her that I could not do anything, but that Fluffy would come back when she was ready. Nana just wears me out. I have worried for a long time that she might close the door so that Fluffy could not use her doggie door any more. Most days I do not have enough energy to walk to the office door to make sure that it is still open, let alone walk there every few hours to check it out. Maybe if M and A2 check it each day, it will be enough.
January 20
Today we went to A's house for R's birthday dinner. The temperature outside was heading for zero, but inside was all the warmth of a family gathering. A3 came down from Boston to help R celebrate. D greeted all the women with hugs and kisses.
Nana seemed to enjoy the party. She ate all her dinner, and seemed more comfortable with all the company this time. She just came into the living room to ask me if she should go back to bed. She did not seem confused tonight the way she often is after a party.
January 27
This week has been very difficult for Fluffy. Nana has been feeding her too many cookies. On Wednesday Fluffy came into the living room to show me her latest gift from Nana. It was a very large sandwich roll. When I went into the kitchen, my package of sandwich rolls was wide open. On Friday morning, M found a large bundle of Nana's clothes wrapped up on her bed. She also found that Fluffy had been sick on the floor. The bundle of clothes smelled like Fluffy. The bed was also soiled. M did a lot of laundry that day. A2 also did more laundry that night.
Tonight when A came, she cut a lot of the soil off Fluffy. Then she gave her a bath. Fluffy feels much better now. She even smells better.
Nana was very confused yesterday. When R2 called from North Carolina, she did not want to talk with her. She asked me to talk with her instead.
Nana seemed better when A came tonight.
February 6
This morning M told me that Nana has some teeth missing. She has removed a bridge with several teeth. We do not know if she has lost the bridge or hidden it. She does not even remember removing it.
All day long Fluffy follows Nana around. She settles down in whatever room Nana chooses. But at night lately she has been going to sleep in her cage. Maybe she is just tired and needs her rest.
February 10
Last night I found a dish full of egg salad and wheat thins on the floor in the kitchen. I got rid of it before Fluffy could finish it. Today Fluffy was sick again. I will not be ordering any more salads for Nana. Lately I have been hiding things like rolls and muffins. But in the past Nana has tried to feed poor Fluffy raw pasta. I can't hide everything. Maybe tomorrow she will find something to do.
February 17
Next Sunday Nana will be ninety. I suggested to A several times that she celebrate Nana’s birthday next Sunday and save my birthday for another day (Note: my mom & Nana have the same birthday. One of Nana's brother's also shared a birthday with them). Nana gets really angry if she has to share anything with me. She does not like to see me use my computer even though she has one of her own in her studio. She has forgotten that she once used it every day. She is angry when she remembers that I have a car and she does not. Once when R was leaving, after he hugged Nana, he gave me a hug. Nana was furious. She claimed that I was trying to steal her boyfriend. So the plan is that I will go out for lunch with my friends S and L. S is my massage therapist. L is someone that I once worked with. We get together three times a year to celebrate our birthdays. We always have a wonderful time. A will have a birthday dinner for Nana at her house.
Nana came into my room at two, three, and four this morning to ask me what time it was. So I sleep in the morning when M comes.
February 20
Last night I finally was able to get some sleep. Until this morning I had not seen M for three days. Each day when she comes, I fall asleep. Nana wanders around most of the night asking questions like "What time is it?" "What should I do next?" "When is someone coming?". I try to be patient, but it is difficult when I am so tired.
February 22
Nana and I were up all night again last night. But at four o'clock, when I thought that she had finally gone to bed, I heard her playing the piano. She played for several minutes longer than she usually does. She played the piano tonight too.
January 1
On Sunday night Nana was restless. Finally at 4:30 AM I thought that she had settled down, so I went to sleep. When M came in at 8:00 AM, she told me that Fluffy was vomiting all over the place. There was evidence that Nana had fed Fluffy lots of cookies and also egg salad. M cleaned everything up, gave Nana a shower because she had come into contact with Fluffy's illness, and then she gave Fluffy lots of water and ice cubes to chew on. She suggested that I not feed Fluffy her regular dinner until late in the day. Fluffy seems to have recovered, thank goodness.
Last night Nana went outside at 3:00 AM. When she came back inside, I went into the kitchen to close and lock the door again. That is when I noticed that the cellar door was open. The basement lights were on, and Nana's walker was by the door. I waited for her to come back upstairs, but she came in from the living room. So I got her to close the basement door, and I went back to bed. She came into my room at 4:30 AM and told me that I needed to go into the basement because her clothes were down there. I explained that I could not climb the stairs, but that A could check when she came to fix her breakfast.
When A arrived, Nana said that she could not find the quilt that she uses in her chair. Alice searched, but could not find it. I suggested that she try the porch because Nana had been out there. The quilt was not on the porch. A finally found the quilt outdoors on the side walk. She also found Nana's bathrobe, her blouse, and her sweater. A put those things in the washing machine. I was sorry that Nana was so confused, but I am glad that A could see some of the problems that we have each day.
Nana slept most of today. A had trouble waking her up tonight to eat her dinner. Once A left, Nana went back to sleep again. I hope that does not mean that she will be wandering around again tonight.
January 10
It has been several days since I have written because things have been rather quiet here. But today Nana was agitated again. She kept going out on the porch and leaving the door open. She also did something to the porch door so that it would not close. One time she left her walker in the doorway to keep the outside door open. When M came, she was able to get the door closed again.
On the good news side, R came tonight, and he was able to get Nana to play the piano for a while.
The house is quiet at the moment.
January 15
Tonight Nana was certain that Fluffy was not her dog, but a strange dog that had entered the house. For more than an hour I kept trying to convince her that Fluffy really was her dog. Then she wanted to wake her up to take her outside to go to the bathroom. I finally gave up trying to get her to leave the poor dog alone. Then she went into her room. Devoted Fluffy followed her. Ten minutes later Nana told me that SHE had put Fluffy outside, and now she would not come back inside. She said that I needed to get Fluffy to come into the house. I told her that I could not do anything, but that Fluffy would come back when she was ready. Nana just wears me out. I have worried for a long time that she might close the door so that Fluffy could not use her doggie door any more. Most days I do not have enough energy to walk to the office door to make sure that it is still open, let alone walk there every few hours to check it out. Maybe if M and A2 check it each day, it will be enough.
January 20
Today we went to A's house for R's birthday dinner. The temperature outside was heading for zero, but inside was all the warmth of a family gathering. A3 came down from Boston to help R celebrate. D greeted all the women with hugs and kisses.
Nana seemed to enjoy the party. She ate all her dinner, and seemed more comfortable with all the company this time. She just came into the living room to ask me if she should go back to bed. She did not seem confused tonight the way she often is after a party.
January 27
This week has been very difficult for Fluffy. Nana has been feeding her too many cookies. On Wednesday Fluffy came into the living room to show me her latest gift from Nana. It was a very large sandwich roll. When I went into the kitchen, my package of sandwich rolls was wide open. On Friday morning, M found a large bundle of Nana's clothes wrapped up on her bed. She also found that Fluffy had been sick on the floor. The bundle of clothes smelled like Fluffy. The bed was also soiled. M did a lot of laundry that day. A2 also did more laundry that night.
Tonight when A came, she cut a lot of the soil off Fluffy. Then she gave her a bath. Fluffy feels much better now. She even smells better.
Nana was very confused yesterday. When R2 called from North Carolina, she did not want to talk with her. She asked me to talk with her instead.
Nana seemed better when A came tonight.
February 6
This morning M told me that Nana has some teeth missing. She has removed a bridge with several teeth. We do not know if she has lost the bridge or hidden it. She does not even remember removing it.
All day long Fluffy follows Nana around. She settles down in whatever room Nana chooses. But at night lately she has been going to sleep in her cage. Maybe she is just tired and needs her rest.
February 10
Last night I found a dish full of egg salad and wheat thins on the floor in the kitchen. I got rid of it before Fluffy could finish it. Today Fluffy was sick again. I will not be ordering any more salads for Nana. Lately I have been hiding things like rolls and muffins. But in the past Nana has tried to feed poor Fluffy raw pasta. I can't hide everything. Maybe tomorrow she will find something to do.
February 17
Next Sunday Nana will be ninety. I suggested to A several times that she celebrate Nana’s birthday next Sunday and save my birthday for another day (Note: my mom & Nana have the same birthday. One of Nana's brother's also shared a birthday with them). Nana gets really angry if she has to share anything with me. She does not like to see me use my computer even though she has one of her own in her studio. She has forgotten that she once used it every day. She is angry when she remembers that I have a car and she does not. Once when R was leaving, after he hugged Nana, he gave me a hug. Nana was furious. She claimed that I was trying to steal her boyfriend. So the plan is that I will go out for lunch with my friends S and L. S is my massage therapist. L is someone that I once worked with. We get together three times a year to celebrate our birthdays. We always have a wonderful time. A will have a birthday dinner for Nana at her house.
Nana came into my room at two, three, and four this morning to ask me what time it was. So I sleep in the morning when M comes.
February 20
Last night I finally was able to get some sleep. Until this morning I had not seen M for three days. Each day when she comes, I fall asleep. Nana wanders around most of the night asking questions like "What time is it?" "What should I do next?" "When is someone coming?". I try to be patient, but it is difficult when I am so tired.
February 22
Nana and I were up all night again last night. But at four o'clock, when I thought that she had finally gone to bed, I heard her playing the piano. She played for several minutes longer than she usually does. She played the piano tonight too.
Sunday, January 6, 2008
December 2007
December was a very challenging month for my mom and Nana. People with dementia act out in unpredictable ways. It is difficult for those living with them to remember to not expect rational behavior. My Nana has begun to hide things. She sneaks. She yells. She looks for people who have long been dead. There is no logical explanation. It is so critical to remember to not take the outbursts personally. Even if one knows this logically, it is difficult to ignore when someone tells you that they do not like you and want you gone from their home. Both my Nana and my mom sound severely sleep deprived which cannot be helping. The conversation about perhaps selling the house to get long term care for Nana has thus far been avoided. I find myself morbidly waiting for the event that will make everyone willing to talk.
December 12, 2007
For the past few days, Nana has slept most of the day. But she was up to play the piano with R last night. And she watched some television with me tonight. Nana really needs to use her walker now. R, M, and I keep reminding her to use it. She admits now that she does need it. Since I tell her that I need to use my walker all the time, she does not seem to be resisting the use of it as she was before. But she does forget to use it sometimes. And sometimes she loses it altogether.
December 16, 2007
Last night Nana and I had some problems. There was an ice storm going on so it was very cold outside. Nana kept opening the kitchen door and going out on the porch. No matter what I said to her, she kept opening the door. I was really getting cold. After more than an hour, I finally put my large walker in front of the kitchen door and sat on it. Nana was very angry that I would not let her keep the door open. Finally at 3:45 AM I thought that she went to bed. So I went to bed too. When M came at 8:00 AM, she told me that Nana had lost her rings. Nana said that she hid then in a pocket. M searched for a long time, but she did not find the rings. When A came tonight, she searched for the rings too, but she could not find them. During dinner, Nana changed her story. She said that she put the rings on a napkin, and then she blew her nose. So A thinks that Nana threw the rings away with a napkin. A took a bag of garbage out of the garbage pail out doors. She said that I should tell M to go through it in the morning, and any other garbage in the house. Nana has decided that she does not care if the rings have been lost or thrown away by mistake. She said that they were not worth much. I do not think that is true. But it would not do any good to argue with Nana. Now Nana is asleep since she did not sleep last night. Each day bring something new.
December 18, 2007
R was here this afternoon. He went upstairs and found Nana's rings in her jewelry box. He also found that Nana had turned all the lights on upstairs. For the time being, I have put the rings away in my room. We have all been in a tizzy for days trying to find the rings. Nana kept changing her story about where she had put them. She had us going through the garbage looking for them. We are really glad that the rings have been found.
December 20, 2007
Last night I was up all night with Nana. At 5:30 AM she came to find me in the bathroom. She said that I needed to take the little girl home. I finally went to sleep at 6:00. I slept through M’s visit to fix Nana's breakfast. Thank goodness M understands that sometimes I just need to sleep. Nana does hide things all the time. This morning I found a plastic bag full of cut vegetables in the silverware drawer. Not knowing how long the bag had been out of the refrigerator, I had to throw it all away.
Last night and tonight A2 has been washing the curtains and windows in the living room. The last time they were washed was when I did it in 1974. Housekeeping has never been of much interest to Nana.
December 21, 2007
Last night Nana and I were up all night. At 5:30 AM she told me that I had to take the little girl home. When I asked her what little girl, she got angry and walked away. Tonight while I was watching TV I fell asleep. Since I was up all night, I should not be surprised. It was 11:00 PM when I awoke. I heard a noise upstairs. Then Nana came down the stairs. I asked her what she was doing upstairs. She said that she did not know. I do not know how long she was up there. She must have gone up after I fell asleep. I told her that we did not go upstairs anymore because we could not walk very well. Then she walked quickly, without her walker, into the next room. She was not a bit hesitant. Obviously I have known that she sometimes went upstairs, but this is the first time that I ever saw her coming down the stairs. R suggested that we put a gate on the stairs when he found her rings upstairs. But she gets really angry whenever she is thwarted. My computer is right next to the stairs. She has already tried to destroy it twice. She has also threatened me several times. I am an easy target because I am here most of the time. It is a difficult situation.
December 23, 2007
The past few days have been difficult. Nana keeps waking me up at night. Last night was the worst. I did not sleep at all. Nana came into my room at 7:30 AM to continue berating me for something. She was still going strong when M came in at 8:00. M tried to get Nana to go into the living room by promising her coffee and breakfast. Nana came back to tell me that I had to move out because I would not co-operate with her. She said that it was her house and she did not like me.
This afternoon I went out for therapy. When I came home Nana had left her walker in the hallway so that I could not get to my room. She was in the living room feeding something to poor Fluffy. When she heard me moving her walker so that I could get to my room, she came in and grabbed the walker and would not let me pass. I can only stay vertical for a short time. I really needed to get to my room so that I could lie down. Nana finally moved when I yelled at her. Asking nicely does not help. But yelling really takes its toll on me. I finally made it to my room. Then I heard Nana in the kitchen. She was banging dishes and pans around. I heard her in the refrigerator. Then I heard her try to turn on the stove. Thank goodness A2 came in then. She finally convinced Nana to go to the living room so that she could cook her dinner. Nana insisted that she wanted eggs. I guess that is what she was trying to cook.
Tonight Nana went upstairs twice. I tried to convince her that we do not go upstairs anymore. She just ignored me. When she came down the second time, she was looking for Pop. She accused me of lying to her when I told her that Pop was not here. I stayed in the living room, but I could hear Nana slamming doors. Nana continues to be very angry. I am not sure how much longer I can keep going without sleep. Nana does not seem to need sleep any more.
December 28, 2007
Yesterday I needed to leave the house for an appointment before M arrived. When I arrived home, M told me that there were boxes all over the kitchen floor. I learned later that Nana had also tried to take my computer apart again. Nana told M that she does not like to be left along. I try to leave the house only when M or A2 will be here, but it is not always possible.
December 12, 2007
For the past few days, Nana has slept most of the day. But she was up to play the piano with R last night. And she watched some television with me tonight. Nana really needs to use her walker now. R, M, and I keep reminding her to use it. She admits now that she does need it. Since I tell her that I need to use my walker all the time, she does not seem to be resisting the use of it as she was before. But she does forget to use it sometimes. And sometimes she loses it altogether.
December 16, 2007
Last night Nana and I had some problems. There was an ice storm going on so it was very cold outside. Nana kept opening the kitchen door and going out on the porch. No matter what I said to her, she kept opening the door. I was really getting cold. After more than an hour, I finally put my large walker in front of the kitchen door and sat on it. Nana was very angry that I would not let her keep the door open. Finally at 3:45 AM I thought that she went to bed. So I went to bed too. When M came at 8:00 AM, she told me that Nana had lost her rings. Nana said that she hid then in a pocket. M searched for a long time, but she did not find the rings. When A came tonight, she searched for the rings too, but she could not find them. During dinner, Nana changed her story. She said that she put the rings on a napkin, and then she blew her nose. So A thinks that Nana threw the rings away with a napkin. A took a bag of garbage out of the garbage pail out doors. She said that I should tell M to go through it in the morning, and any other garbage in the house. Nana has decided that she does not care if the rings have been lost or thrown away by mistake. She said that they were not worth much. I do not think that is true. But it would not do any good to argue with Nana. Now Nana is asleep since she did not sleep last night. Each day bring something new.
December 18, 2007
R was here this afternoon. He went upstairs and found Nana's rings in her jewelry box. He also found that Nana had turned all the lights on upstairs. For the time being, I have put the rings away in my room. We have all been in a tizzy for days trying to find the rings. Nana kept changing her story about where she had put them. She had us going through the garbage looking for them. We are really glad that the rings have been found.
December 20, 2007
Last night I was up all night with Nana. At 5:30 AM she came to find me in the bathroom. She said that I needed to take the little girl home. I finally went to sleep at 6:00. I slept through M’s visit to fix Nana's breakfast. Thank goodness M understands that sometimes I just need to sleep. Nana does hide things all the time. This morning I found a plastic bag full of cut vegetables in the silverware drawer. Not knowing how long the bag had been out of the refrigerator, I had to throw it all away.
Last night and tonight A2 has been washing the curtains and windows in the living room. The last time they were washed was when I did it in 1974. Housekeeping has never been of much interest to Nana.
December 21, 2007
Last night Nana and I were up all night. At 5:30 AM she told me that I had to take the little girl home. When I asked her what little girl, she got angry and walked away. Tonight while I was watching TV I fell asleep. Since I was up all night, I should not be surprised. It was 11:00 PM when I awoke. I heard a noise upstairs. Then Nana came down the stairs. I asked her what she was doing upstairs. She said that she did not know. I do not know how long she was up there. She must have gone up after I fell asleep. I told her that we did not go upstairs anymore because we could not walk very well. Then she walked quickly, without her walker, into the next room. She was not a bit hesitant. Obviously I have known that she sometimes went upstairs, but this is the first time that I ever saw her coming down the stairs. R suggested that we put a gate on the stairs when he found her rings upstairs. But she gets really angry whenever she is thwarted. My computer is right next to the stairs. She has already tried to destroy it twice. She has also threatened me several times. I am an easy target because I am here most of the time. It is a difficult situation.
December 23, 2007
The past few days have been difficult. Nana keeps waking me up at night. Last night was the worst. I did not sleep at all. Nana came into my room at 7:30 AM to continue berating me for something. She was still going strong when M came in at 8:00. M tried to get Nana to go into the living room by promising her coffee and breakfast. Nana came back to tell me that I had to move out because I would not co-operate with her. She said that it was her house and she did not like me.
This afternoon I went out for therapy. When I came home Nana had left her walker in the hallway so that I could not get to my room. She was in the living room feeding something to poor Fluffy. When she heard me moving her walker so that I could get to my room, she came in and grabbed the walker and would not let me pass. I can only stay vertical for a short time. I really needed to get to my room so that I could lie down. Nana finally moved when I yelled at her. Asking nicely does not help. But yelling really takes its toll on me. I finally made it to my room. Then I heard Nana in the kitchen. She was banging dishes and pans around. I heard her in the refrigerator. Then I heard her try to turn on the stove. Thank goodness A2 came in then. She finally convinced Nana to go to the living room so that she could cook her dinner. Nana insisted that she wanted eggs. I guess that is what she was trying to cook.
Tonight Nana went upstairs twice. I tried to convince her that we do not go upstairs anymore. She just ignored me. When she came down the second time, she was looking for Pop. She accused me of lying to her when I told her that Pop was not here. I stayed in the living room, but I could hear Nana slamming doors. Nana continues to be very angry. I am not sure how much longer I can keep going without sleep. Nana does not seem to need sleep any more.
December 28, 2007
Yesterday I needed to leave the house for an appointment before M arrived. When I arrived home, M told me that there were boxes all over the kitchen floor. I learned later that Nana had also tried to take my computer apart again. Nana told M that she does not like to be left along. I try to leave the house only when M or A2 will be here, but it is not always possible.
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