It’s been awhile since I’ve posted about my in-laws, Liz and Nigel (awhile since I’ve posted on anything…). They’re doing fine, in some ways. But having them close to us and being our responsibility worries me a bit, and not in the way you might imagine. Not necessarily neurotic detail-worry about filling out Blue Cross forms, ordering incontinence products, and keeping advance directives up to date.
Two weeks ago, Nigel fell as he was transferring in the bathroom. He forgot to put the brakes on his wheelchair so it scooted backwards and he went down on the hard bathroom floor. It was his third fall in two weeks. Things seemed okay for the rest of that day and the night, but by morning just moving his left leg an inch or two produced a loud shout of pain. He had also been sort of sleepy lately, and couple of times had quite low blood pressure, so I “held” (asked the girls not to give) his one remaining blood pressure medicine. Plus he had a urinary tract infection when we did the labs so I treated that. The fall, sleepiness, blood pressure, infection, all fairly routine “medical” issues, seemed to be coming at us a bit thicker and faster than usual.
The Clarks’ wonderful family doc was away on holiday but still responded to my e-mail which I sent as usual to keep him in the loop and apologize for interfering. So we more or less had to decide whether to truck Nigel to the hospital to x-ray his hip or not. I got some strong opioid pain medicine (the pharmacist allowing himself to be talked into fronting the drug without the legally-required duplicate prescription form which I had left in town), and in a couple of days the pain did settle down without the misery and risk of going to ER. Nigel seemed to perk up a bit too whether because of the treated urinary tract infection or because he now had enough pressure to keep blood going to his brain. A replacement physician visited and reassured us.
We face some less technical issues with the two lovely caregivers who don’t always agree on details of care and definitely have completely different styles. Liz also likes things her own way and I worry that even though we have a unique “high-touch” arrangement going for them there may be a certain amount of suffering in silence going on.
But what really bothers me is the thought of what would have happened to 99.9% of frail older people if any of the things Nigel experienced these past couple of weeks had occurred. No daughter living next door (albeit four days a week) spending time listening and reassuring, no full-time caregivers partly paid for by a regional program, no funds to make up the difference, no psychiatric backup to fine-tune critical medications, no lovely familiar and beloved comfortable little house to live in, no experienced geriatric medical son-in-law to deal with technical issues and help weigh them against risk and overall philosophy … We are in trouble much of the time, with resources that would be unheard-of by just about everybody who needs them.
We face crises with a certain amount of equanimity because we have adjusted expectations during the “controlled descent” (as my respected colleague Ted Rosenberg would say) of frailty. We have what we need. But what about the dozens of bewildered people who phone me out of the blue after an Internet search, looking for house calls, help stickhandling the system, advice on finding a doctor, or a way not to lose hope durig a muddled lengthening hospital admission? I’m afraid we have a long, long way to go before we can congratulate ourselves on making elder care work for everybody.
Oh how I agree! On December 19, we were thrust into the hands-on caregiving of our mother – straight out of long-term care where she essentially has been for approx 5 years (with a couple of 6-month hospital stays in between for good measure). I was a health care social worker for 8 years, and a community geriatric social worker with Fraser Health Authority for the last 5 of those years. I have an insatiable thirst for knowledge, so find myself quite prepared for the actual caregiving scenario – I know way more than the average person trying to navigate the road ahead. In our scenario, constipation has been the huge learning curve, with the health care system falling dismally short of providing the needed assistance. Not for one minute do I believe that what we have now taken care of twice should have been remedied by trips to the hospital, as the system suggested. Oh well, onward our family marches. Despite the ugliness that crops up with my mother’s medical condition, she can also be incredibly lovely and thankful, making it all worthwhile. And sort of necessary, for me, really, because without us helping one another, life is nothing.