When my mother was first diagnosed with Alzheimer’s disease 2 years ago I thought I understood what that meant. But I didn’t. I don’t think anyone can until you really see what it’s like.
My mother is no spring chicken. She’s 90 now so she was 88 then. But, looking back, I see that there were signs even years before it became so bad that it couldn’t be covered up or ignored. I have seen my mother once a week, every week, for the last 15 years. She started seeming increasingly forgetful. Couldn’t remember words sometimes or people’s names. Then she started having trouble with numbers. She couldn’t really add them up anymore. She was always technically challenged but I would try. I got her a laptop so she could play solitaire and see pictures. She was trying to type and couldn’t figure out how to make a capital letter. This is a woman who was a typist and secretary for 30 years. When I told her “hold down the shift key and type the letter” she looked at me like I was speaking a foreign language.
But still I thought, “she’s getting old.” Then she started getting more forgetful. Telling me the same thing several times during a visit. She’s always been emotionally difficult. Crying and weeping at the drop of a hat. But it got worse. Finally, I said, “mom you’re memory seems to be getting worse. I think we should talk to the doctor about it.” She was resistant, claiming it’s all part of getting older. So I made an appointment, picked her up and as we entered the office she looked at me and said, “why am I here?” I said, “for your memory” and we both laughed. No one’s laughing now.
The doctor did a mental evaluation test and determined that she had “mild to moderate” Alzheimer’s. There’s no blood test for Alzheimer’s. It’s more an assessment by a professional. The doctor suggested that she try Aricept which is pretty much the only medication available for slowing the progress of Alzheimer’s. Unfortunately, it can have significant side effects. She spent 10 days puking at which point we gave up on that.
She continued living in her apartment in a senior living building and, after a while, I took over all her finances. Then I increased the level of care she received so that people managed her daily medications. She became physically more frail and could no longer walk without a cane. She kept taking falls so I got her a walker and a power chair. She liked the power chair and would zoom crazily down the halls.
I started getting regular hysterical phone calls that she “wants to die. You have to bring me a pill. I can’t do this anymore.” It was heart breaking and upsetting. I’ve always had an odd relationship with my mother. My therapist thinks she’s a border line personality for what’s that worth. She’s always viewed her life as being miserable regardless of her actual circumstances. From the earliest time I can remember I felt like it was my job to make her happy. An impossible job but there you have it.
Last Spring she took a couple of falls and ended up breaking a couple of ribs. That’s when the shit really hit the fan. She ended up in the hospital. They kept her in a room where someone stays all day to watch the patients in case they try to get up on their own or escape or something. She was pretty disoriented. Then I came to see her the next day and she was completely hallucinating. She didn’t seem to really even know I was there, certainly didn’t know where she was and kept yelling to someone “open the door” and acting like she had keys and was unlocking a door. Over and over and over again. She was very angry and kept yelling “open the door. Open the fucking door. I’m going to hit you if you don’t open the door.” It was very, very disturbing.
Turned out she was dehydrated (which is common in elderly people) and it caused the hallucinations. I spoke with the doctor who informed me that she really couldn’t live on her own anymore. And I now felt completely overwhelmed. I’d have to figure it all out. Where should she go, close up her apartment, everything. Plus the emotional aspect was huge. I had always had a parental role with my mother but now I was making all her life choices. Fortunately, my wonderful daughter, took two weeks off work and flew down to help. And my son, who lives here, pitched in as well.
First, I found a nursing home near my home where she could stay while she recovered from her fall. We identified a small company that would take all my mother’s possessions and figure out where to sell them and get the best price. Then the arduous task of going through her apartment and packing stuff up. For the most part it wasn’t too bad except things were stuffed in all sorts of weird places. Kind of disturbing. She had always been so meticulous about keeping her records and such. Now I was finding papers from 2008 stuffed hither and yon.
Once she was in the nursing home I proceeded to try and figure out the longer term solution. Through the nursing home I was put in touch with a lovely woman who acts as a kind of broker who helps you find placement for people. We ended up finding a wonderful board-and-care residence not too far away and affordable. After a couple of months in the nursing home I took my mother to her new home. There were many upsetting details that occurred but she’s there now.
She keeps declining. When I first heard Alzheimer’s I thought “okay…she’s forgetful…I’ll just remind her of stuff.” But it’s not that. They don’t call it dementia lightly. It’s not just that she can’t remember things for more than a few minutes anymore (although there will be the odd bit or thing she’ll hold onto) she has all sorts of delusions persistent and transitory. Often when I talk to or see her she’ll say something like “I didn’t come down to see you feeding the baby this morning.” a) She lives in a one floor place b) the baby (as far as I can tell) is my granddaughter who c) lives with her parents. She insists that children come into her room and fall asleep on the floor. When I spoke with her one day and mentioned that I was tired she said “well, you just shoveled snow yesterday.” We live in San Diego.
She barely remembers her previous residences. Her most vivid (and I use the term loosely) concept is that she lives in Brooklyn in the house she (and I) grew up in. She sold that house forty years ago.
My thoughts are filled with dread. What part of her mind will crumble next? Will she stop knowing me? Will that be better (at least for her)? How long can it go on? And what kind of daughter am I that I wish her a speedy end?