I found out my mother died after we got back to the ship today. She was 95.
This was not unexpected. She had been declining for a few months and her decline in the last month was very serious. She hasn't recognized me for two or three years and I feel like I really lost her some time ago. We were able to see her on October 5, 6, and 7 and we knew it would be the last time.
I think she was an unhappy person. I'm not sure why and I will never know. Over the years many, many people told me she was lovely, sweet, nice, etc. This will always be a puzzle to me. I rarely saw that person. I saw someone who was bitter, jealous, angry, unforgiving, and extremely obstinate. She always had a lot of power over me because of this. She was not a warm, fuzzy person. She was not a hugger.
About 10 years ago the fact that my mother had entered the early stages of dementia was undeniable. The years before dementia showed up were not easy for me, and they probably weren't easy for my mother. I think, now, that some early signs of dementia had already shown up, but were not recognized, because erratic behavior was nothing new. There were always other issues.
My mother began to lose her power over me when dementia began to affect her ability to function and I had to start taking control of various aspects of her life. She hid the dementia from the world, and from me, as long as she could. It was hard to recognize what was going on because her usual stubbornness masked the bad judgment which was an early sign of dementia (at least in her case). Gradually my brother and I came to realize that we had to take control of more aspects of her life as her ability to make appropriate decisions seemed to wane.
First, our taking control was restrained. It took the form of encouraging her to move out of her condo and into an independent living community for seniors. My brother and I took our mother to look at several places. For over two years we took her around to the same places, over and over, while she dithered and stalled. Then it went from encouraging her to insisting. It took almost 3 years in all until she finally agreed to move. We didn't want to take away all of her autonomy, and we didn't want her to change her mind, so we didn't put our feet down when she chose a place that we knew was wrong for her.
Once she was in the independent living facility it was time to tell her she shouldn't be driving. She resisted and we had to take control again. My brother took her car. It had several unexplained dents and scrapes.
Things seemed to be okay in independentt living for a year or so until she ended up in the hospital. I don't even remember what triggered it. I do remember that at this point we found out our mother had been overmedicating herself with Ambien and we had to take control of that situation. (Where she got it from is another story for another time.) We told her she had to move to assisted living and it was not negotiable. At the assisted living facility Mom's medications would be controlled by the staff. This time my brother and I picked the facility, but it would be a couple of months until an apartment would be available.
While she was in the hospital private duty aides had been brought in to watch our mother and help her until her mind cleared. When she was discharged from the hospital she said she still needed the private duty aides, and we believed her. We thought it would only be for a few days. After a week she said she she still needed them. And after another week. My mother had gotten used to having the company and having someone do everything for her and she insisted on keeping the aides. We thought at the time that she really did need them, even though it was costing thousands of dollars a week. It was her money. By the time that we realized we were being had, it had become an expensive lesson. How do you respect someone's autonomy if you think they are making poor decisions? You give them the benefit of the doubt. As this situation dragged on we finally exercised our legal powers and told the nursing company "No more; we want the hours for the aides to start tapering off," and we thought that was the end of it. But it turned out that there had been a miscommunication and the aides continued 24/7. We didn't know this for another week or two. When the bill arrived, more calls were made and the hours for the aides were finally stopped when an apartment in assisted living became available.
We moved Mom to assisted living, and, while that was the end of the aides, it was not the end of having to take control of additional bits of her life. I took all of her financial records, checkbooks, credit cards, etc. and went through everything. I found out that for a couple of years she had been paying a lot of money to a bookkeeper to come in every month to pay her bills and balance her checkbook. I found her earlier failed attempts to balance her checkbook. I found checks to any charity that sent her mail. I found meaningless notes scribbled on the backs of used envelopes. I hired a social worker to check in on her and to advise us on the various issues that had arisen and were likely to arise in the future.
When she had still seemed functional to me, before the independent living facility, she had given me her jewelry for safe-keeping. She said she couldn't wear her rings any more because of arthritis in her fingers. I took the jewelry home with me and kept it in a safe place. When she moved into the the independent living building she demanded that I bring her jewelry back. She said she wanted to wear it (to impress the other people in the building). It was her jewelry, so I brought it back to her, except for the rings, which I knew she couldn't wear. I didn't realize that her judgment was already slipping away. When she was later hospitalized, I was told that she had taken the jewelry to the hospital with her (as if that was a safer place than her empty locked apartment). My brother brought it back to her apartment. When we moved her to assisted living the jewelry was missing. It never turned up.
After going through her finances, I set her up with one debit card and a checking account with a small amount of money in it. I paid all her bills and kept an eye on her other bank accounts and investments. I had all her mail forwarded to me. I got all her tax information ready for the CPA. I made things as simple for her as possible. She used the debit card a few times, but then stopped and never used it again, although she carried her purse everywhere. Eventually I cancelled the card and closed her personal bank account. I met with her lawyer and went over her estate plan. I met with her CPA. I met with her investment advisor. I met with her doctors. I met with the social worker and the assisted living staff.
I visited her about 3 times a year during this period. I would go through her clothing and figure out what she needed and buy it for her. I would take her out to eat at her favorite pancake house. I arranged a special dinner for her 90th birthday. I listened to her complaints about the assisted living facility, the food, the other residents, the staff, the people at her dinner table. And then I would see her greet all these people with a sweet and delighted smile, and I saw her get the same warm greeting from them. I listened to her talk about friends and relatives whom I always thought she liked and she would tell me she had never liked them. I never heard her talk about my father, who died in 2002.
My mother had a large oil portrait of herself, painted by a semi-famous artist when she had been a young woman. She was quite beautiful when she was younger. It was one of her prized possessions. For several years she had been "offering" it to me. I didn't particularly want it. I always tried to come up with an excuse that wouldn't hurt her feelings: I can't bring it on the plane, I want you to enjoy it for now, etc. In retrospect, I suppose I should have just accepted the picture graciously and acted like I was excited to get it.
A few years earlier my mother had started to develop a relationship with a first cousin of mine who was living in the area at that time. This cousin had grown up in the Midwest. Her family never traveled to our area and my family never traveled to the Midwest. I had only met her once in my whole life. I don't even know if my mother had met her before this time. If so, it would have been only once or twice.
One day, during the time she was in assisted living, my mother told me she had given the portrait to this cousin, who was delighted to have it. I was delighted because my problem was solved, the portrait would stay in the family, and someone who wanted it had it. I was wrong - my problem was only beginning. In retrospect, it is clear that my mother gave it to my cousin to spite me for not wanting the portrait. No more than a couple of months later I got a call from my mother. She was in a state. She said my cousin had taken the painting and she wanted me to get it back. I knew this wasn't true and I tried to placate her and remind her that she had given the picture to my cousin. For the next ten to twelve months I would receive angry calls from my mother, at all hours, regarding the portrait. It was always the same: get it back, her niece had tricked her, etc. She was very angry at me for not getting the portrait back (or perhaps for not wanting it). By this time my cousin had moved back to the Midwest. During this period we had practically no communication about any other subject. My mother refused to talk about anything but the picture. There didn't seem to be much of a problem with her memory (although she conveniently forgot that she had willingly given the painting to my cousin). She had latched on to this issue like a bulldog and would neither forget nor let go of her anger.
After about a year she wore me down. I couldn't take it any more. I said I would try to get it back. I contacted my cousin, explained the situation, and asked if she would give it back. I promised her that she could have it after my mother passed away. She agreed, but she was working in another city and was not going to be home for a few weeks. When she did get home she was sick for a while. My cousin said she would be able to send the picture soon, but first she needed to figure out a safe way to ship it.
Right about the time my cousin was ready to ship the picture, I had a conversation with my mother and she did not mention the picture. She was calm and reasonably pleasant. I told my cousin she didn't need to return it. My mother never mentioned the picture again.
They say that dementia patients remember emotions longer than they remember facts. In retrospect, this may have been a case where my mother's attachment to her picture, her anger at me, and her regret over giving it to my cousin seemed in character with her personality and even now it is not easy to tell how much dementia may have played a role in this drawn-out tantrum.
The assisted living facility did not allow alcohol. It is not a good idea to drink when you are taking a number of medications. Yet every time I visited I would find stashes of vodka (always her favorite) in various places in her apartment. I don't know how she got to a liquor store or how she paid for the vodka.
Things gradually got worse. Mom couldn't remember (or didn't care) what time zone I was in and she'd call me at all hours. One month there were nine 911 calls on her phone bill. She couldn't remember to use a cane and she fell several times. It became more and more clear that the assisted living facility was oriented toward those with mobility issues and wasn't really set up to deal with cognitive impairment. They suggested private duty aides. We tried that, and once again it spiraled out of control.
After 2 1/2 years in assisted living, the social worker suggested that it might be time to move her to a dementia facility. The social worker said it would be better to move her while she was still relatively high-functioning. She would be better able to learn the routines there and find her way around. The staff would like her better if they could get to know her as a person who still had some memories and social graces. And she clearly wasn't doing well where she was. Time to take control again and make an executive decision, with no input from Mom this time.
There was no way she would go willingly. The trick was to get her out of her apartment and get her room in the new place set up with her furniture and clothing immediately, so that when she found out she was moving, there would be a familiar-looking room ready for her. I made a shadow box with photos off her and my father, my brother and me and our spouses, and her grandchildren. My brother took her out to lunch while I orchestrated the move. I hung the shadowbox by the door to her room so that she would be able to remember who had been important to her. After lunch my brother brought her to the dementia facility to "show it to her". We were advised to leave while the staff broke the news to her. It did not go well.
My brother and I and the facility director had already decided that she should not have a phone after the move. For months she raged every time I called her on the house phone. She told everyone who would listen that I had stolen her fur coat. It was impossible to have a civil relationship with her. I decided not to spend money and time visiting her if she would refuse to see me, or worse, attack me verbally. After almost a year the facility director thought she had calmed down enough for a visit. On the first day of the visit she was sweet and happy to see me. When I went back the next day she was not sweet and not happy to see me. I was her enemy and she snarled at me.
I began to visit her 3 or 4 times a year. She continued to calm down, but she also seemed to be letting go of who I was and who she was. Perhaps she let go of her anger towards me because she began to think I was her niece (a different niece, not the one with the painting). It was clear that she still recognized me as a relative and she seemed happy to have visitors, but her interest in a visitor only lasted a short time. For the past two years or more it has been extremely difficult to interact with her. It was not possible to have a two-way conversation. She didn't want to go outside, didn't want to go for a walk around the facility, really didn't seem to want visitors for more than a short time. Sometimes she would just fall asleep during our visits.
At first she could ask questions. Usually the same question several times during a visit. One of the most frequent questions was "Where do you live?" Later she stopped asking questions, but would still answer a question or two. When she couldn't answer questions about herself or her family, she could still answer questions like "Do you want to do _______ now?" The answer was usually "no."
When I saw my mother in August this year that spark of recognition in her eyes was gone. She appeared to be frailer and less connected to her environment. I went to Shabbat services in the facility with her. She always used to enjoy services. I sat next to her and she seemed to enjoy being there. She smiled at everyone. When she lost her place in the prayerbook I reached over to turn it to the right page for her. She pushed my arm out of the way with surprising strength and dug her nails deeply into my arm. I guess I had invaded her space. For the rest of the service she sat with her back to me. I knew I was nothing to her. I kept telling myself not to get upset because it was the disease, but I had watched the disease exacerbate many of her personality traits and it was hard not to think of this as who she always was, with some of the filters now removed.
When I saw her in early October she had declined noticeably since August. She was no longer participating in the activities. She was no longer walking. She could speak but was incoherent. She repeatedly fell asleep, or simply withdrew into herself, while I was trying to interact with her.
Dementia is a disease of looking back. You look back and say, "Oh, that's what was going on." You can't always see it at the time it is happening because you don't have all of the pieces of the puzzle. You can't always see it because most dementia patients are very good at hiding their condition from the world, at least in the beginning. You can't always see it because you don't know what to look for, or even that there is something to look for. You can't always see it because sometimes the patient is still being who they have always been.
May she find peace at last.
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