(This post was cut from a Link Log due to length.)
Why do people engage in what Ann Brenoff, below, calls "caregiver shaming"? We're talking to ourselves, of course. One year "Age is just a number" and "people are as old as they feel" and "when you're thirty-nine and in love, nobody can tell you anything," and the next year when that distinguished-looking senior partner becomes a geriatric patient...I mean I told myself all of it, in advance, repeatedly. I knew one day I was going to be my husband's nurse, if I stayed with him, and then I was going to be a young widow. I said to myself and to other people, "If you don't enjoy being a geriatric nurse, don't ever date anyone who's even as old as you are." I don't particularly enjoy being a geriatric nurse, although I've been trained and paid to be one. I did love my husband enough to want to be his. I just, shall we say, expected it to happen about thirty years later than it did; apart from having cancer he was the sort of person who ought to agree, reluctantly, to slow down just a little bit after age ninety. Instead of which...in December nobody believed he was even sixty, and then suddenly in January he started looking and moving and functioning as if he might already have been ninety. I started looking as if I might have been more than forty, too, although I was still thirty-nine and still in love.
The job still totally stank. If anybody out there thinks of caring for sick people as a matter of bringing them flowers and reading to them, get over it. You do those things in the time that's left over, if there is any, in between rolling someone who may weigh more than you do out of a filthy bed, changing the bed, bathing the patient, washing the linens, mopping the floor, and if the patient's having a particularly nasty reaction to meds s/he may also "decide" to hit you for mentioning that s/he needs diapers. In our home my husband always did all the driving, except when we walked to a store nearby together, so little things like laundry and grocery shopping suddenly became major problems--I couldn't leave him alone at home, and he couldn't relax in the passenger seat of his car. I seriously believe that doing boring little chores for people who are very ill is a way nature intended us to be able to cope with the misery of watching our loved ones become very ill. That doesn't make it pleasant...just less horrible than it might otherwise be.
At least you're not the one in pain. Well, actually you are in pain; it just feels wrong to mention your stiff muscles or bruised arms when the sick patient is obviously so much worse off than you are. There's the fact that the patient is dealing with the emotions of his or her own death. There's also the fact that you're dealing with the emotions of your own bereavement. If you had time to think about this for very long, you'd envy the patient.
I knew a gal who did, actually, envy her patient/husband. Twenty-five or thirty years ago, when told he had multiple sclerosis--although he was likely to be able to walk for another thirty years, and he still is--she couldn't deal with the idea that he wouldn't be a handsome young athlete any more, so she attempted suicide. Such a role model for the children! Someone did go to the trouble of taking her to a hospital. I never heard when or whether she was released.
We really had been "thirty-nine and in love," my husband and I. There'd been moments when we'd raved about wanting to be total slaves to each other. Because I'd developed celiac sprue, which even Irish people usually don't get before midlife, before I was even all of thirty, I'd sort of expected that he'd be the one who ended up as the care giver. During our time together there was one morning when I was sick enough to stay in bed, but it was only listeria, and I was up by dinnertime. So I owed him one. Then there was one morning when he was sick enough to stay in bed--and it was cancer, and exactly six months later he died. The thing I wouldn't have believed possible, before it happened, was that I did remember that I owed him, that I loved him, that I'd wanted to spend whole days just showing how much I loved him. Some of the time, being the nurse still felt like an act of love, up to the end.
And even with that blessing...a lot of the time, being the nurse just plain stank. Multiple myeloma, cancer of the bone marrow, causes spikes in blood pressure. My husband, a gentleman and a scholar, had managed his rages and really tried to work the Anger Busting program for years before he finally came down with cancer. (That it hadn't worked seems, now, to have been a clue that he had multiple myeloma.) Then there were times, especially during reactions to medications, when he was too ill to know or care what he was doing and that irrational rage would just take over. The first few times he did awful, unforgivable things, he didn't even have the grace to pass out immediately. Once he flung out of the house threatening to commit suicide and make it seem that I'd killed him, and actually got out of sight, in the car...now that was a delightful afternoon. The fact that we both knew, and had known for a long time, that his mood swings were part of a physical disease process kept us from taking them seriously after they'd passed. It did not keep him from being dangerous for a few weeks, when his mind had deteriorated enough that he acted out rage and his bones and muscles hadn't yet deteriorated enough to stop him, among other things, putting a crack all the way down the toilet fixture.
I think now, having survived those months, that being the care giver was a blessing. I'd do it again. Without the drudgery, or without the grace of those days when we said "I love you" and "Please forgive me" and "I forgive you" every single day, I don't think I would have survived.
I certainly did not want, nor can I imagine any circumstances under which I would have wanted, to have turned the experience of initiation-into-widowhood into a...job. Reporting it as billable hours? Now that would have been insanity. There's a reason why we don't "pay" and "account for" and "unionize" the home care of family members during their final illnesses, just as we don't do those things for pregnancy, birth-giving, or baby-nursing. Because there's not enough money on Earth, that's why! You do it, or you don't do it. The person for whom you do it, or another member of the family, returns what you've done in kind, or does not. Nobody has a right to negotiate your wages for doing it. (Though nobody else has a right to any claim on the person's estate, either, if the person leaves one.)
What I did want, and would want again--and have become a little more empathetic about imagining that other people may want--was a bit of "respite care" from more of our friends and family members. We had not had a great number of close friends, as a couple, and most of them weren't in Washington, and some of them did send money...but somehow...well, when the person who normally does the driving is the one who's not fit to walk, a cheque just sits there, because the person who's doing the nursing can't leave the patient long enough to go and cash it, much less pay for the groceries or laundry or meds. We had one friend who actually offered to drive for us on two occasions. That friend and those occasions will never be forgotten.
Instead of telling the healthy family members to cherish their last few precious memories of their loved ones, which they already know they should be doing, more of us should be offering to reduce the drudgery. The chore I hate most in the whole wide world is not even mopping body effluvia off floors, but driving, so the chore that comes to my mind is driving. Other people may feel differently. Ask them. Give them a bloomin' break.
Sometimes it really is the misery of driving, or mopping, or dealing with estate lawyers or whatever, that keeps the devoted wife/husband/son/daughter/parent from cherishing the last few precious memories, etc., etc. Sometimes, if you can get the dreaded chore out of the way, the devoted healthy member of the family can cherish the time s/he wants, and needs, to spend with the one who's dying.