Dementia Journal, January 13, 2019

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Dementia Journal, January 13, 2019

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9:30 pm

Lately I’m starting to feel as if I’m on the final leg of this long descent into night of Mom’s struggle with dementia. Her vitals and blood sugar levels continue to be good for the most part, but she seems to be fading. But even with her mental capacity so diminished, she has a lot of self-awareness. She is frequently focused on the fact that she thinks she is dying, right now, anytime. She’ll say to me not long after I’ve gotten her up in the morning, in a very somber tone of inevitability, “I’m dying!” She’s said this so often that I’m beginning to worry about the “boy who cried wolf” syndrome. Imagine what it’s like to hear this from a loved one so often! I really feel numb sometimes.

She sleeps most of every day and 12 hours at night. The main times she is awake are at night after the caregiver has left. That’s when she’ll start talking and asking questions incessantly, repeating them over and over. She’s afflicted with terrible dry skin and itching, and I’ve tried all the major anti-itch creams, seemingly to little avail. It drives her and me crazy so I’m going to talk to the doctor about it. It will be an ordeal but my brother and I will have to take her to the doctor later this week anyway because she has this strange, cyst-like growth on her wrist that won’t go away.

She spends a lot of time reading her Bible verses or praying. I’ll be sitting next to her on the sofa fiddling with my phone and trying to read an article or two out of the hundreds saved on my Pocket app. Mostly it’s an effort of will to concentrate. Sometimes I rather futilely bemoan the loss of my nights these many years now. I really can’t do anything I want to because I have to sit here with Mom. Night after night, month after month and year after year, since 2010.

Don’t get me wrong. As you who’ve been reading this journal know, I’ve accepted this responsibility and I dearly love my mother and will do anything in the world for her. But I’ve sacrificed so much of my life for caregiving the past ten years that I’ve forgotten what it’s like to be free, free in the sense of being able to do what you want, when you want. That’s lost to me. I know where I’ll be and what I will be doing every night of the week.

Here’s something that I want to impart to anyone caring for a loved one with Alzheimer’s or another type of advanced dementia. When Mom is in a good mood and feeling ok, I’m okay, too. I feel I can cope, life’s routines go on, and there’s a sense of normalcy in our little world. For several days in a row recently Mom has been so sweet, so loving and even thoughtful of others, despite her dementia. She says the kindest and most delightful things to me and the caregivers who work for us. Many of the things she says are quite humorous and tender as well. All is sweetness and ligzht. I’m relaxed, and I’m more confident I can handle the uncertainties of this unending, unnerving progressive disease of the mind.

But there’s also something I try to avoid as it gets late each evening, and that’s beginning the sometimes arduous and unpredictable getting-Mom-to-bed routine. Often it goes smoothly, but sometimes, as happened two nights ago, it all goes downhill on the turn of a dime. It often begins when I attempt to lift her by myself from the sofa to the waiting transport chair. She’s rather heavy actually for 95 (145 pounds), very sensitive to pain, her skin is paper thin and the slightest wrong move on my part will set her off. She’ll tell me I’m hurting her while she’s also asking who I am and looking very strangely at me with this wild and bewildered look In her eyes. I might manage to get her teeth brushed and successfully get her on the portable commode, wiped, cleaned, and in her nightgown and then tucked in bed.

Then it will start. She’ll call out for her mother and father or asks where my dad is. All of a sudden out of nowhere, she turns into this other, totally unrecognizable person — angry, paranoid and saying absolutely horrendous and awful things to me and about me. I don’t even want to recount any of them now, they’re so unbelievable and awful. I’ve gotten somewhat used to it, but it reached a new level of awfulness the other night. You would never imagine this was the same sweet person of an hour ago telling me she loved me and putting my hand next to her cheek. She wouldn’t go to sleep so I had to sit in the room and tell her over and over again qq I was and that I would be with her all night and that she would be okay. Repeat, repeat, repeat. Finally after about a half hour she fell asleep and I tiptoed out of the room breathing a sigh of relief. I headed immediately for the porch, felt the brisk cold winter air, and looked up into the night sky. Ah, peace at last.

8 am, Jan. 15, 2019

It didn’t last long. For the past two nights at 2:30 am, and in what is unfortunately becoming a pattern, I heard Mom on the monitor:

“Mama, Daddy!”

Maybe it will stop, as it sometimes does. I hear some mumbling and rustling. I had just gotten comfortable each night, starting to read, watch YouTubes or a movie, listen to music or write, when after about ten minutes of this, I make the trek downstairs to check on her and reassure her, trying to get her to go back to sleep.

What happens is that I think she wakes up confused and frightened because she feels alone and she’s very afraid of that.

When I come into the room, she doesn’t know who I am at first.

“Where am I?”

I tell her.

Then a minute later, “Where am I?”

“Who are you?” She’ll ask me.

“Guess.”

“You’re P___.” (One of our caregivers)

“No, Mom, I’m your son.”

“What’s your name?”

When I tell her she seems to recognize me.

But she quickly forgets all this, and it’s back to “Where am I?”

And to think earlier in the evening she’d had some lucid spells.  At one point  she asked me, “Have you eaten? I’ll fix you some supper. I love you.”

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Oldlamplighter

Hi caring daughter,\r\nThank you so much for the suggestion of a Hoyer lift. I heard about it not long ago but they cost several thousand dollars when I checked on Amazon. I did not think Medicare reimbursed for equipment like this, but I will call our doctor to see about that. Right now I am using a Mueller back support waist band which is helping and I’m very careful when I help her get up. She still has a fair amount of strength in her legs and arms but it’s dwindling slowly. So I can still lift her butI J don’t know for how much longer. Basically it involves getting her up from the sofa or her bed and onto the portable commode or transport chair.\r\n\r\nThanks again, caring daughter, and I wish you all the best as you continue to care for your mother.

Thanks for sharing. First let me say I admire you for staying by her side and caring for her. Not many men can handle it. Us women are expected to do it and handle it all, specially when you are a boomer and brainwashed into believing this is the way it had to be for us. My mom is 90 and suffers from paraphrenia, other than that, she is in good physical health. I felt you pain when you described the horrendous and awful things she said about you. It's happens to me constantly. At the beginning I could not help my tears and pain. It's taken a lot of meditation and chanting to myself: \"that that is not my mom\". This has helped keep my sanity and stay emotionally dis attached from it all. But the few times when she is herself and sweet to me (very few and I mean few), I cherish it and enjoy those moments of being with mom. My granddaughter is at the moment in boot camp in the Army and in one of my letters I told her I too was in my own boot camp!

Oldlamplighter

That is exactly right. Sometimes I feel so helpless to make her feel better.

Oldlamplighter

Thank you for the kind words of understanding. I treasure those special moments in Nature when I feel free and at peace in the universe. I think we all long for that in one way or another.