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.

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.

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.

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.

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.

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.

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.