July 2021
We finally had to do it. Hire a caregiver from an agency to give respite to dad and, hopefully, help with mom’s hygiene. It’s only been four visits so far, but dad seems slightly lifted in mood. He hasn’t stopped complaining, of course.
The caregiver is only there eight hours a week; two four hour shifts. Both are mornings so dad can do whatever he does and mom is more alert and less agitated at that time of day.
What mystifies me is what the caregiver is actually doing. Keeping mom company? Feeding her? Cleaning the house? Going for walks with her? Is this solely for dad’s benefit so he can get a break? Working on her hygiene? I realize this last is not an easy thing to do. Mom is highly mobile and vocal and would object to someone bathing her, but this is something that we wanted a caregiver to do because mom isn’t bathing or washing her hair, although she must be brushing her teeth since dad buys toothbrushes by the dozen because mom keeps hiding them after she’s used them.
I’d like to know since we’re paying $29 an hour for the privilege.
The plan is split this four ways every month to ease the burden, but that’s still about $240 for each share each month, which for me means cutting back on something else, and there isn’t a whole lot to cut, or finding some other source of income which I don’t have time for.
And the fact of the matter is, mom’s condition will get worse, obviously. If mom doesn’t die from some other cause, like a fall, or have a stroke or something, she will need experienced 24/7 care to feed, bathe, dress, and medicate her. That means this care is in the home or she goes to a nursing home. My parents don’t qualify for Medicaid, they have just a little too much, and don’t have the resources to pay for this kind of care out of pocket.
The irony is that if my mother DOES have a stroke, she’s eligible for all sorts of care. Anyone who has a stroke goes to a rehab situation for a while to relearn skills lost due to stroke. My mother would not be able to relearn those skills, of course, and would then be eligible for nursing home care. I doubt she’d last very long even if she survived a stroke. Her body is just becoming too weak.
I ask myself all the time: What kind of a life is that anyway? I’ve made it very clear to my husband and siblings that if I ever get to this place in my life, a terminal illness for example, I don’t want extraordinary measures taken. I might even want assisted suicide. The trick is: When? When is the right time?
Quality of life means something. I’m well aware of the argument that you can’t compare humans to animals, although sometimes I’m not sure why, but I’ve had pets I’ve kept with me way too long because I couldn’t bear to let them go, and it was a selfish thing to do. They suffered. Their quality of life was awful. After lavishing love and attention on them for years, that’s what I gave them: a miserable end of life until they were put out of their misery.
These pets lived long, healthy, lives into their old age when their bodies just… gave out. This was usually due to loss of kidney function and the poor dears stopped eating and drinking enough water and became skinnier and skinnier. We have one now who we’ve kept going for the past nine years or so after he was diagnosed with diabetes. Insulin. Regular blood work tests. Special food. He’s 17, but he’s getting near the end. I can see that.
Poor Neutron, the first to go this way, was skin and bones at the end, but still had a glint in her eye until nearly the end. Then she became so weak that she couldn’t stand and we rushed her to the vet who got fluids into her which strengthened her temporarily. But as the vet had predicted we were back within 24 hours and made the hard decision to put her down. We had managed to get her through about 10 months with medical care, but watching her waste away getting skinnier and skinnier and just falling over because she didn’t have the strength to stand was insane.
I’m watching this happen to my mother. I know it seems like a very strange comparison, but it’s not really. My mother has gone from 105 to 95 pounds over the last three months. Always a grazer-eater she has lost her appetite and grazes even less now. It’s hard to get her to eat anything. She’s not interested in protein drinks or soups and eats non-nutritious things like toast or cookies. Her blood work shows that her kidneys are starting to lose function. Her muscle tone is degenerating. Even if she didn’t have Alzheimer’s, this isn’t good news.
However, she can still walk in the park and take pleasure in seeing and talking with children. She still has a glint in her eye. But for how long?
End of life decision making isn’t easy for your pet or your parents. I’m really hoping that mom’s end will come peacefully in her sleep, but you can’t count on that. Given her current trajectory, it’s more likely she will be hospitalized and ridiculous measures will be proposed to extend her life.
But why?
I don’t make these kinds of decisions lightly, but I think quality of life matters and her quality of life would be taken away from her by her illnesses, so why prolong the inevitable? Why make her suffer?
