My mother has Alzheimer's.
I remember when I was diagnosed with fibromyalgia in 1987, I was so relieved I just about burst into tears. I'd been trying to get an explanation for the pain that moved around from my neck to arms to back for nine years. I'd been told I had "hypersensitive nerves," carpal tunnel (with treatment that proved disastrous), etc., etc. Suddenly it wasn't all these wrong things and wasn't all in my mind. It was a real illness. In 1994 when my therapist decided I needed medication for my depression, I did burst into tears of relief.
This time, although we've been searching for an answer about Mom's condition for some time, I didn't feel much relief. A little, maybe - just that we could stop searching. We had kind of hoped it was vascular dementia (caused by blockage in arteries supplying blood to the brain), because that can be slowed through medication, but it's not.
The neurologist, Dr. Patel, recommended specialized testing to determine the parameters and severity of her condition. He prescribed a very low dose of Seroquel to aid with sleep, confusion and depression. He also gave me an armload of material to read - and said to start looking into nursing homes that have Alzheimer's units.
Meanwhile, Mom is to the point where if she is left alone in a room for even 30 seconds she starts screaming, "Where is everybody? Am I alone?" or shouting for a specific person. Although Dr. Patel said we should make every effort to have her participate in simple tasks like folding laundry, Mom won't cooperate. She is getting physically weaker because she will only get out of her easy chair for meals and to go to the bathroom. I've tried to get her to get her own glass of water and she's immovable - "You're already up! You get it!"
Yesterday we had an appointment with our psychiatrist for a two-week follow-up visit. I made the big mistake of telling Mom we had an appointment when she got everybody up at 6:15. From 6:30 on, she kept calling me out of my office to say, "Let's go!" I'm afraid I got very angry after awhile and yelled at her before storming out of the room. I heard Mom turn to Nohemi and say, "She's cross!"
Then I made another mistake. Getting into the car has turned into a trigger for her to be hungry. We should ALWAYS take a bottle of Ensure with us to give her in the car, but I didn't think of it in time. All the way to Dr. Meyer's office and all through the session she complained (loudly) about hunger. She didn't know what day it was, what month or even what year. She couldn't remember my birthday until prompted with the month. When he asked her what time it was, she shot back, "Don't you know?" which was pretty funny. (On Sunday when my brother told her he was going to cut the grass at his house, she quipped, "Don't hurt it!")
Dr. Meyer, too, said it's time to get information about nursing homes. He called the deterioration in just the two weeks since we'd last been there "galloping." I asked if I should tell her she has Alzheimer's, and he said no - it will just upset her and she won't remember it anyway. When she expresses feelings of fear, anxiety or dread (which is often), he said to reassure her that she is safe and loved. And he said he's much more worried about me at this point.
He doubled my dose of Trazodone, which we had added two weeks ago to help me sleep, and told me I absolutely must get out of the house while Nohemi is here. Walk, plant (my plants are arriving), anything. Even just walk around the yard and enjoy looking at the garden (although so many of last year's plants didn't come back, so it's not a wholly enjoyable pastime).
I told him about last Saturday when I went to the salon for a manicure. When my stylist came over and put his arm around me to say hello, I nearly started to cry. I never feel like crying at home - but a casual hug away from home almost opened the floodgates. I know I'm grieving for the loss of the mother I knew. But at home there's so much anger in me that I don't have time to grieve.
By this time in the session Mom was saying, "Let's go! Let's go!" every minute or two. Dr. Meyer looked at me sympathetically and said I should come back - alone - in two weeks, and we'd talk about grief.
Last night I put Mom to bed as usual, but her panic was worse than ever. I asked her what she was afraid of and she pointed to the snarling wolf on the front of my T-shirt. I left the room but she called me back twice, the second time begging me to stay. So I got a book and sat on the other side of the bed reading until she fell asleep. I'll just plan on that from now on.
Mom called for me three times while I was writing the last two paragraphs. The first was because she couldn't get the answer to the Jumble in today's paper. The second was to ask why she felt such fear in her chest. I told her, as I always tell her, it's because she has atrial fibrillation - the upper chambers of the heart flutter instead of beating properly. The third call was a shriek - she was in a state of terror. "I'm AFRAID!" she screamed. Nohemi and I soothed her. I told her she was safe. She seemed to be calming down but then suddenly burst out, "What's that?" It was our cat Cricket who had wandered in close to Mom's feet. "A black cat!" I continued to tell her it was Cricket. I asked her if the two ceramic tigers on the shelf below the television were scaring her. She said yes. (These tigers were birthday gifts some years ago from me and my brothers - that she had asked for.) Cricket jumped up onto the shelf. I took the first tiger and started out of the room - and mom screamed. Cricket had come back out of the niche below the TV. "What's that? Is it ALIVE?"
I rushed back and she asked, "Am I dead?" We told her no, she wasn't dead. "Are you sure? We said yes. "You're not Jesus?"
After that she calmed down. I moved the tigers to my room and got dressed - looking carefully through my T-shirts which mostly have dragons, wolves, lions or tigers on them - I even passed over the two that have raccoons peering out, fearing the eyes would frighten her.
I've left a message asking Dr. Patel to call. And I'll be wearing innocuous shirts from here on in.
