Dementia Journal: May 13, 2018: Troubling developments

Today is Mother’s Day, and I’ve tried to fill the den with flowers because Mom loves them so much. I woke up late this morning because no caregivers were coming in. One was supposed to come and relieve me from 4-8 today, but she called yesterday and said she just couldn’t come — too much going on with Mothers Day etc. “Sure, I understand,” I said, gritting my teeth. “I know it Mother’s Day; can’t expect anyone to work today especially m if they’re a mother,” I told her trying to put the best face on the situation and trying feebly to be humorous. But that sinking feeling wasn’t going away. I hung up after saying I’d see her Tuesday. I was so looking forward to getting out of the house, but it’s Mother’s Day after all.

I came in the bedroom to get Mom up, putting on my best cheery demeanor and wishing her a Happy Mother’s Day. She smiled faintly and looked up at me and said, “I’m dying.” She’s said this several mornings in a row. Her vitals have been good. I discussed them with the doctor. Diabetes and atrial fibrillation under control. But she’s had a continuing problem with a stiff neck and associated pain for a few days now. Mom has an extremely low pain threshold. I thank God she doesn’t have arthritis or any pain to speak of. If she did I really don’t believe I could handle it. When she has any pain at all she thinks she’s dying. “Mom, you’re okay. Everything’s okay”. “No, it’s not,” she’ll loudly snap back at me.

Maybe she’s right. Sometimes I don’t know. The first morning she woke up with the crick in her neck was one of the worst mornings I’ve had in a long time. She was in agony whenever she moved a certain way. Yelling out in pain. You would have thought she needed morphine. Whereas you and I suffer mightily with this kind of pain, we know it’s a muscular problem that will go away before too long. Someone with dementia doesn’t think of it that way. To Mom it’s horrible and catastrophic and she’s convinced it’s killing her. I gave her Advil and put a heating pad on, then gave her a sedative. She was sleeping in another hour or so.

I really don’t need these sorts of relatively harmless episodes to occur. It frays my nerves and makes me worry that one of her dementia “storms” will brew out there in the bewildering and scary ocean of her discontent and fear. I say this because after a lull of a couple of months, the personality changes I dread have starting coming back every day or every other day the past two weeks. They don’t last long — an hour or so — but they shake and rattle whatever composure and sense of equanimity I’ve been able to achieve. And prior to a couple of weeks ago I was actually feeling pretty good about Mom and my ability to handle things.

These angry and paranoid episodes sneak up on me and the caregivers. She’ll be as sweet as can be and have a peaceful, uneventful morning and afternoon when something trigger the mood and personality change. Usually it’s in the evening sovI can’t help but think it’s Sundowners
Syndrome, where at dusk and in the early evening people with dementia get unusually fearful and anxious. Mom doesn’t manifest this overtly but I do believe it’s a factor.

“Mom, please eat your snack because you’re diabetic and we don’t want you to have a low.”

“No, I’m not going to eat anything,”. She will testify reply.

“Who said I have to eat this?” How do I know it won’t kill me?” she asks, referring to her peanut butter and cracker and vanilla pudding.

“Mom, I love you and I’m only doing what’s good for you. We don’t want you to get low.”

She looked up at me and with a strangely contemptuous smile, blurted out, You’re lying. I don’t trust you for one minute.”

Thirty minutes later she had eaten her snack and was sleeping.

As I texted a friend the other evening:

Mom is having personality changes briefly almost every day, whereas the past few months were practically free of that. She will get very obnoxious, suspicious and hostile and refuses to eat because she doesnt trust me. When I try in my nicest way to reason with her, she looks up at me and tells me I’m lying. I don’t even recognize anything about this person the disease creates, and which comes and goes. I’m not even using the word “who” in a personal sense because it’s not really a person I know saying this. It’s a construction of her disordered mind and thinking, but it’s very real and convincing..

The following night there was this exchange. She had decided she wasn’t getting the proper care and didn’t want me in the house. She said I had to leave.

“I know you mean well, F__, she said. “But you’re not doing anything but sitting there. I need help. I hope you’ll leave of your own accord. I’ll send you a check for whatever I owe you.”

Naturally I don’t take it personally, these fleeting episodes of detachment from reality. But it’s upsetting nevertheless because if she doesn’t come out of it soon, I start freaking out a bit, thinking about that night six months ago when she got totally out of control and I thought I might have to call 911. Fortunately the other night , as happened that evening months ago, that other person, my mother maddened by dementia, faded away and sweet, gentle Mom returned. Again, thank God. I was praying.

Fortunately the serious depression I was experiencing last Fall is gone. I can’t help but think the antidepressant truly worked in this instance. I’ve always been skeptical, and I still have my doubts about their efficacy. But the intense anxiety I used to feel each morning and the dread of getting up is gone. This has been a Godsend because it makes me much more capable of dealing with Mom’s inexorably deteriorating mental state. I’m enjoying keeping up with my photography, tackling all the reading I want to do, and going to writing group meetings at the senior center. I really look forward to that. I can’t adequately convey just how much those discussions and shared reading of our writing has meant to me. There is life outside of caregiving and retirement has also made this possible. It’s been almost exactly a year since I retired from my job of 21 years. Now it’s hard to imagine any other way of life.

I’ve been writing this while trying to answer a stream of questions from Mom. I’m sitting next to her in the sofa typing this now.

She’s asking where her sisters and mother and father are.

“Do I still have a mother and father?”

“Where are B__ and R__?” (her long departed sisters). “Are they in Heaven?”

“Am I normal?”

“Am I living a Christian life?

“Am I living?”

“Please tell me I’m not dying.”

“I want to live.”

“Please pray for me.”