I am about to become a caregiver again.

[DebJ]

103. I'm so sorry sheshe. The exhaustion does become just tooooo much.

My mother, 86, just went into a nursing home two weeks ago. Her dementia took a sudden and very deep decline. She is in complete agony every waking minute, reliving every anxiety she ever had in her 86 years over and over as if it was happening right now. She has zero happy moments. Zero. She sleeps much of the time. She also has multiple physical disabilities and just broke her shoulder falling out of bed on top of many other sad things. I can deal with losing her; since she is 86 I have had many years to prepare. What is exhausting is constantly trying to soothe her anxieties. On top of her constantly and only thinking of worries from the past, she has added a fear that the people in the nursing home are out to kill or hurt her. I just spent four days there from 8am-8pm, both weekday and weekend, and worked with most of the staff that work with her. They are not only kind, pleasant, helpful, they are extraordinarily so, every one of them.

What makes it worse is that Dad, 83, also has some dementia but not enough for the doctor to make a formal diagnosis as yet. We all see it, but the doc doesn't because Dad passed a memory test. When Dad is cogent enough to understand what is happening with Mom, seeing his quiet anguish is enough to tear my heart out. He still calls her his bride; they've been married 60 years, and that is how he introduces her. Most of the time he doesn't comprehend her situation though, and he tries arguing logic with her, and that is hopeless. He goes to the nursing home from 8am to 8pm and wanted to sleep in the chair next to her and is angry they won't let him. He doesn't understand she is never coming home again. She asks to 'go home' for a total time of at least 4 hours a day, sometimes begging and pleading for 30 minutes non-stop. But the 'home' she wants to go to is her home in 1967, or 1957, or 1987. (Their residence as of last year became my sister's house, and Mom couldn't adjust to that, nor the hideous way my sister kidnapped them and sold all their stuff out from under them, and that's when Mom began to go south, and after 6 months, really bad, and finally, within a year, just snapped.) Dad makes it much harder on the staff at the nursing home. Mom will ask for a bedpan every 45 minutes....only because since she just woke up, she thinks she needs to go. And Dad will keep asking them to put her on a bed pan, every 45 minutes, when Mom doesn't need to go at all. He takes her in and out of the front and back doors, sometimes in and out every five minutes, and that sets off a building-wide alarm that some nurse has to go run and shut off (he takes her onto little porches there). But the staff understands and treats my father well, too. Since Dad is getting zero mental stimulation, just staring at the walls or off the porches all day long, he has tanked quite a bit in just the past two weeks.

My parents are no longer two people, they are each half of one. He inhales, she exhales, and vice versa. When one goes, the other will not be here long.

Seeing my parents' emotional torment is complete hell for me. They were always warm, good, loving people, and would help anyone they could anytime they could. My Dad was one who would, quite literally, give the shirt off his back just because he saw someone who needed it, and need I say they had a very modest financial life, very modest. And now, to have to spend their final years in this agony, is so cruel, unjust, unfair. They are not going to get any better. And so I pray fervently that God will take them both one night soon, quietly, in their sleep, and let them cross over together.

It is also exhausting just being with Mom all day long and trying to assuage her fears. And I only could do that for a few days, as my sister took my mother out-of-state, a 7-9 hour drive, and my husband needs my help as well (not with dementia though). Last month I was up 20 hours a day for a week trying to take care of her in my sister's house. It was unbearable in so many, many ways. But mostly, it is the anguish for both of them.

I hope sheshe you can get some rest and peace from time to time, so that you can still retain a part of yourself for yourself. I never knew anyone with dementia before. I never knew how horrible it can be. A fate worse than death, it is, at least for my mother and father. I knew it was bad, but until I lived it, I didn't know how really, really agonizing it is. Now I feel it. And I feel for you.