Friday's post "Is there a right to die?" was about the frequent torment of those coping with the end of life. It drew a lot of reader response. This email, from a woman in the Western suburbs, seemed to embody a number of the issues I was trying to address. Rather than read it and drop it down the electronic well, I thought I would share it, not because it is extraordinary, but, just the opposite, because it reflects what happens all too often to people at the ends of their lives and to those who love them. We can do better.
I had to take over complete care for both of my parents when Dad had a stroke following about three years of colon cancer treatments. The stroke put him into the hospital, and while there, the doctor declared that it was time to call in the hospice angels (not what he called them, but what I think of them as.) At our first meeting, the hospice nurse recommended I get Mom tested for dementia, and my life changed dramatically from that point on.
But I had to find a place to keep Dad safe immediately, since Mom was unable to care for him at home. She'd been starving herself and weighed only about 80 pounds, so was in no shape to lift him to provide any of the physical care he needed. So I found an assisted living place fairly close to their house in the city. What a dump! Once he moved in there, they put him on a floor of people needing intensive care, since he was bed-ridden. He'd lie in his dirty diaper for hours, fruitlessly ringing the bell, but no one ever came to take care of him. I don't blame the caretakers, but the administration who felt that the inadequate number of caretakers was just fine for the amount of people living there. Anyway, I'd visit Dad and take him on the elevator, down the three flights, so he could have a smoke out front. I found out the male night nurse was stealing his cigarettes. And when Dad would roll himself in the wheelchair down to the elevator, they'd ignore him for hours, leaving him sitting there sadly, and he wasn't allowed to go down to go out front by himself. Sigh.
After only a couple of days, Dad started asking me hopefully each time I'd visit, "Did you bring my gun with you this time?" I told him I wasn't about to do that. He assured me that he'd take care of things himself, that all I had to do was bring it. I pointed out that they'd know someone brought it to him, and I loved him dearly, but not enough to go to jail for having helped him to commit suicide. For fear that Mom would shoot me as an intruder, I brought my husband with me, and we removed both guns and turned them in at the local precinct. Judging by the behavior of the cops, they never made it into the lock-up, but were probably "lost," then sold somewhere as antiques.
I moved Dad after only about a week, and the assisted living place refused to refund the 1 month I'd prepaid for his care, insisting it "wasn't their fault" that I was moving him. I didn't want to fight that battle, so I never told Mom about that. I moved him to a place close to my home in the suburbs, and convinced Mom she had to move there also to care for him. Once there, he told me he tried to swallow his pillow, then his blanket, trying to kill himself. No good. Then he tried to swallow his own tongue...that didn't work either. He was an atheist, so he yelled at any religious folks that tried to visit him in his last days. He lived for 2 months after I moved him out here. But he kept telling me to "Leave the door open, and tell that old sod, the Grim Reaper, to get his ass on down here, since I'm tired of waiting for him."
Dad had been a carpenter for 50 years. Up until the day of his stroke, he walked many miles a day to the local Dunkin Donuts, for coffee and for the exercise. He'd been an accomplished ballroom dancer, and told me once, sadly, that in his dreams, he could still dance. And the greatest humiliation of his life was having total strangers, young women, changing his diapers. The only thing worse would have been if I did it. If I could have helped him to an assisted suicide, I would gladly have done it, to make his last days less miserable...especially since he kept telling me thatif I really loved him, I'd help him to end things. He was ready to go from the time they told him he'd be bedridden for the rest of what life he had left. He told me he hadn't taken many of his prescriptions because though they were supposed to extend his life, he wasn't sure he would like the kind of life they were going to extend.
We really do need to have this discussion a lot. People should be able, when they're legally compos mentis, to make the decision that they're ready to go, and to die in their own time, and not have to wait around, suffering and/or bored.
And as both of my parents had done for me, I prepaid for husband's and my cremation, so all our kids will have to do is make a single phone call, and things will be taken care of. As a society, we don't like to think or talk about death, though it's a certainty for everyone. It's time we started acting like adults, not frightened children. We need to discuss these issues openly. and hopefully without giving equal importance to the views of some religions, when we don't all believe in the same things.