It Ain't Over 'Til It's Over

It’s been difficult for me to avoid feeling defensive while listening the last few weeks to the series NPR has been running on intergenerational families taking care of elders. It’s a really well-done series, and the individual stories are very moving. It has focused on a very specific segment of caregivers, those who are taking care of elderly parents while also raising their own children. Still, because there’s so little coverage of caregiving for elders in any situation, I have found myself straining to hear my own voice and, given the move we had to make with my father to a nursing home, some validation for what remains a difficult decision.

I’m not going to rehash the absence of any coverage of the men who do this work – I’ve covered that enough elsewhere, I think. Suffice it to say that I think a news organization of NPR’s caliber should have recognized the need for a broader spectrum – or, at least, included husbands and sons of the three central female caregivers in their interviews – more than the one instance I’ve heard. The women are all married, and I can’t believe these decisions haven’t had an impact, or been supported by, their male spouses. Enough said on that.

An even more sensitive issue for me has been the absolute insistence of these families that a) home is the only place their elders can get good care, and b) turning to a nursing home is, in some way, giving up.

In a way, these attitudes are to be expected at the point these families all seem to be in the caregiving arc. I’ve been at that place, too, where things are all sort of working, but just to get by, you have to keep your head down and do your best to ignore the dark clouds that are so obviously looming whenever you raise your eyes. At that point, the idea of a nursing home is like admitting defeat. Family belongs at home, not in an institution. And, as one woman in the segment today asserted, “You always get better care from family.” (The other two female caregivers at the center of NPR’s series murmured in harmony, like back-up singers, in agreement with this statement.) So, a nursing home admission is, by its very nature, an acceptance of failure and a guarantee that your loved will be receiving substandard care.

When the interviewer asked these three women what they thought their situations would be like a year from now – well, the responses were both naive and heartbreaking. There was talk of nursing beds in the living room and 24-hour outside care arrangements. One of the women has a daughter who has given up a full-time career to take care of a grandmother – how much more can she give up? And the caregiver mentioning 24-hour care – the same interviewee asserting that family care is always best – lives a very middle-class life; the expense of such extensive homecare would have her bankrupt in 6 months, at the very longest.

It was the two basic assumptions at the heart of that assertion, “You always get better care from family,” though, that made me want to reach through the radio, take the interviewee’s hands in mine and say, gently, “You’re wrong.” You’re not giving up when you walk into that facility’s admissions office, you’re just changing your job. And that new job of care-manager/social worker/benefits administrator/overall patient spirit-booster can be every bit as challenging – and draining – as anything you did when your parent was at home. But, with the right facility and staff, your parent may get far better care than you could ever provide on your own.

I would be speaking these words from my own experience. Dealing with the second of these assumptions first, my father is getting far better care now than I ever could provide. I realize that I only know one facility, and I’ve heard the news reports of the horrors of abuse that can take place elsewhere. However, in this one nursing home located in my very middle-class town, Dad has 24-hour RN coverage, aides helping him get up, shower, dress, walk and go back to bed again, regular medical oversight from a great nurse practitioner and wonderful social interaction with a staff that can’t say enough nice things about him. Keeping up with the range of medical issues he’s experienced since last October would have destroyed me emotionally, professionally and financially if I’d attempted to keep him at home.

However – and here’s where I talk about the first of those assumptions – in no way did my job end when Dad signed his admission papers. It simply changed. When Dad was living at home, my day’s rotational center was dinner. If the meal wasn’t on the table by 7:15 p.m., things could go south very quickly. He could start bitching about being hungry and there could well be another Scotch by his side to help him pass the time, which only boosted the crankiness factor. So, I counted my day backward from 7:15 – dinner prep needed to start by 6:40 p.m., which left me from 6 p.m. or so until then for my own gimlet chilldown time. To get that 30-40 minute respite, I had to leave my workday for gym and food-shopping by 4:30 p.m., at the latest, and so on, and so on.

These days, it’s my mornings that require counting back, because I make my daily visit around 11 a.m. Why not wait until day’s end? Well, this way I get to check in with the day shift. These are the folks who see Dad most closely – they know if he’s had problems overnight or if he’s had issues getting up. They’re the ones who weigh him several times a week and make any needed doctor appointments. And if I think there’s an issue that really needs a professional’s once-over, this is the time of day the nurse practitioner is most likely to be on the floor. And, by going every day at about the same time, the staff knows when they can catch me if they have concerns to share with me. It’s all part of my new job as care-manager, instead of direct caregiver.

And this care-manager position takes its own toll. Now my late afternoons and evenings are freer, but I’m losing valuable work time during my most productive time of the day, the morning. The process of applying for Medicaid (MassHealth, here in the Commonwealth of Massachusetts) is like the slow death of a hundred cuts, inflicted by all the pieces of paper one must gather to satisfy the bureaucrats. And there seems no end to the line-up of petty, time-consuming errands and phone calls, such as the 2 hours spent in two different marathons with Sprint’s ironically named “customer service” agents, attempting to reverse sexting-service (yes, a service sending him naughty texts several times a week) charges totaling $40 month. He apparently got some spam text, pushed the wrong button on his cell phone and didn’t know why he was getting the daily pillow talk. He no longer has any kind of data-connectability, but I ended up caving and sending the $40 just to end the “customer service” torture.

So, to those middle-aged and older children who think they’d be giving up their work as caregiver by considering a nursing home, I say it might be time to start preparing your skills for a new, and equally important, position as care-manager. Maybe the interviewee I quoted earlier is right, and people really do get the best care from their family – I’m certainly still at the center of Dad’s care. The thing to remember, though, is that sometimes those care needs are best met outside the home.

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