the pacing chosen for caregiving–sprint, long-distance, marathon

The work of caregiving is unending. You can always think of one more thing to make the patient happier/ better/ content.  Perfect caregiving is not an achievable goal, especially for patients suffering from a progressively degenerative, incurable problem like dementia. After all, the patient’s well-being is not merely dependent on care given.

So, how can we pace caregiving–as a sprint, a long distance race, or a marathon?

When I started caregiving, lots of people gave me advice on what else I should do. They told me what I should feed her (including lots of elaborate recipes), how much time I should spend with her (all), how I should take her for outings (as often as possible), and so on. Implementing their suggestions would take 24 hours a day, and I’d be forced to cut out mundane stuff like bathing her and keeping her clean, paying her bills, filing her tax returns, or tracking her medical checkups and doctor visits.

I looked around to see what others actually did (as against what they advised) and how well it worked out. Over-enthusiastic caregivers, I found, wore out soon. Within the first few months, they began fluctuating wildly–at one end of the spectrum, they cooked elaborate meals and arranged complex outings, and at the other end, they were snapping, cursing, crying, despairing. In a few months, and usually less than 2 years, they could take it no more.  Some fell so ill that they needed major operations and it was obvious that they could not caregive. Others found other relatives to shift the patient to, or a home. The trigger for this final step was often the realization that they were so tied down that they could not even take a vacation to visit their own children. The pattern was universal across families, the only exceptions being families that integrated the caregiving into their normal life or decided on an equitable sharing of the work across siblings.

The problem I figured was, most caregivers, when they started caregiving, thought (though they never vocalized it till later) that the person would die in a few months or a couple of  years. Some others, especially those who considered themselves great housekeepers and compassionate persons, assumed that their expert care and love would reverse the patient’s condition, and everyone will be happy and healthy together. By the time these hapless people registered reality (and some never did), they were so burnt out they could not stand the sight of the patient.

I am an only child. The option of moving my mother to a sibling does not exist. My mother’s doctor told me that, if well taken care of, she could live to a ripe old age. I knew that if I broke down under caregiving, she would have to spend the rest of her life in an old age home, feeling rejected, while I would feel guilty and inadequate. Bad for both of us. And after seeing others burn out, I also knew the sustained effort of caregiving was not possible if the caregiver felt depleted on multiple fronts.

I therefore decided to pace my caregiving for a long-distance race, not for a sprint. I decided to do whatever was essential, and some of what was desirable, but not so much that I felt I had no life left.  My chosen model was based on sustainability.

It is over eleven years now that I consciously adopted this role. The work was light in the first few years, but my presence was necessary every day. It is over nine years since I took a vacation with my husband.  I often take a few hours off, but I cannot travel out of town, and I need to spend time with my mother at least 2 or 3 times a day otherwise she gets insecure.

There are days I have more time and energy and can spend it with my mother. I do not. There are days I am absolutely pressed for time and energy. I still squeeze out a slot or two for her, always at the same time every day.  She forgets, of course. I spend an hour every morning with her, but when I go in with her evening meal, she clutches my hand and sobs, saying I did not come all day. I tell her I came. I also tell her that I come every day, and that if she is not able to remember, she can still be sure I came, because that is my daily routine. She can rely on me. I have a chart I show her, with her day’s timetable on it.  She frowns a bit, then her face relaxes. She knows about routines, it is something she (almost) trusts.

Some people tell me I should spend more time with her. I used to do that in the  beginning, on days I was not busy. It almost always led to a problem the next day, and the next, and for many days after that. She would say, “You used to come for more time, and now you don’t.” This would be followed by either rage (it is your duty to come every day) or by bewilderment (what did I do that you have stopped coming) or even sorrow (no one has time for me any more). I would explain that on some days I have more time, and on some days, I have less.  “But if you could do it yesterday, why can’t you do it today?” she would say. I ended up tense and unhappy, and so did she.

Routines work much better

Again, it is impossible to stick to them every day. My daily relaxed slot with her is 10 am to 11 am, and there are days I need to (want to) attend a meeting, or visit someone, and I want to ‘bunk.’

In the beginning, this once or twice a month deviation caused the same old tension, but I think I’ve licked that problem, at least for now. What I do is, I build up my possible absence a few days in advance. I explain the need for this by telling her that I need to go out in part to do something for her, thus making her a stakeholder who will benefit by my trip out.  Earlier, I would tell her I need ‘me time’, but that, I realize, is pointless.  She is always insecure–her dementia keeps her scared enough–and if I have needs separate form hers, she cannot appreciate them. She gets scared I may neglect her. Definitely, she is not in a position to understand or appreciate that my life involves more than looking after her.  Instead, I fix a stake for her–it could be some games for her, or a new nightgown, or that I am meeting a doctor to understand some problem of hers. It could be her tax return (she still registers that she has tax obligations). When I return, I sit and tell her what I did for her in the hours I was absent, and she is able to tolerate my absence without tantrum.

With all this planning, there is no spontaneity left in my outings. It has taken some getting used to, but I have accepted it. At least I can take outings between my ‘visible’ time with her without her knowing and feeling insecure. The attendant knows she can contact me anywhere, anytime, and I’ll rush back.  If I want to go to a place where I cannot be interrupted, I schedule it on a day when my husband is available easily. As I said, it takes some getting used to, but it is doable. I know that as she deteriorates, this may not be possible.

Right now, my mother is in good health, apart from her dementia–her blood pressure is ideal, she has no diabetes, her last ECG was perfect. If spared of severe infections, fractures, and head injuries, she could enjoy (?) many more years. And through these years, the work and worry will continue to increase steadily.

Eleven years ago, I paced myself for a long-distance race of caregiving.  Perhaps I need a careful review now, to identify changes that will allow me to fulfill myself even as she deteriorates, while continuing to do what is needed for her. Perhaps I should prepare for a marathon.

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