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.