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 have known that my mother’s care would last for years. Her doctor had told me that, if well taken care of, she could live to a ripe old age. I needed to last that long; I needed systems that lasted long so that she could be cared for at home and we avoided caregiver burnout. 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 several years since that I consciously adopted this role. The work was light in the first few years, but is increasing. I often take a few hours off, but ensure that my mother has at least one person she can trust nearby. All trips outside home are very well planned and kept to a minimum.

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.

Now we have a routine. Routines work much better 🙂

Alas, it is impossible to stick to them every day. But if there is a deviation anticipated, we try to build up for it. I build up for my possible absence 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 from 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 I will get 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.

With all this planning, there is no spontaneity left in my life. It has taken some getting used to, but I have accepted it. I am also ready to rush back at a short notice–a crisis can happen anytime. Or I make sure my husband is available easily on days when I am not available.

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, and see whether what I need to be ready for is a marathon.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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