Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.

My father was a diabetic who loved food, and his “control” would lapse often. He resented medicines, and while he took them as prescribed, there were patches of time where he decided he didn’t need them (“Let me try controlling it with diet”), and also months where he’d skip blood tests (the rolling “I’ll test after one week”) and doctor visits. They were unpleasant for him; such things usually are. Then things would get worse and he’d force himself back on track. He used to go for walks as his sole form of exercise, but that stopped, too.

As he grew older, he suffered setbacks, as elders do. A stroke or two, extended hospital stays, a face that took a long time to get rid of that lop-sided sag. A strangulated hernia that had us rushing again to hospital emergency wards. Post-operation complications. Frequent sprains and hairline fractures. Rushing to the hospital at night, staying there for a few days, solve problem, back home. All these were worrisome disruptions, intense in the attention and adjustments they needed. Then life would limp back to normal.

In February 1996, while getting up from a chair, my father suffered a “non-traumatic” hip fracture. What this means is, he did not fall and break his bone; he fell because his bone broke. It was that fragile 😦

We did not know it was a fracture–that fact was discovered the next day in a hospital, and overnight, our lives changed. Doctors refused to operate him, and he was to be kept on bed till the bone healed, around 3 months of lying in bed without even turning on his side.

Obviously, we were not ready for this. Clueless would be a better word. But one thing was clear: it was obvious we needed to prepare for caregiving.

Father lay in bed; his leg was in a frame, a steel pin through his knee, a rope and pulley arrangement and bricks used to give the required traction so that the bone healed. Anyone could see he couldn’t walk 😦 That we had to gear for caregiving was obvious to us, to my father, to the doctors, to every family member and neighbor and ex-colleague and friend and repairman who came to the apartment.

Many people dropped by, some to sympathize, some to advise. Chicken soup, freshly-ground special haldi for the bones, one-pound weights for muscle tone, stuff like that. We rushed around figuring out about bedpans and plastic undersheets.

A day into this situation and a kind neighbor dropped by, peeped in to see my father on his bed, then she walked into our living room, settled herself on the sofa and called us all around her. “Get a pad,” she told me. Over the next half-hour, she gave me a comprehensive list of what skills we’d need to pick up and what material we needed to buy, and emphasized that we must get an attendant and gave us contact numbers for that. She had cared for her husband through his terminal cancer a few years ago, and she knew what was involved in looking after a bed-ridden patient. She even warned us about the flow of advice we’d get, and how to sift through it.

God bless her; she set us on track. And others helped.

My father lived for two years after that hip fracture, most of it bed-ridden, even after there seemed to be no direct medical reason for remaining in bed. We had an attendant who came during the day. For two years, mornings were tense till the attendant reported for work, and meetings and programs often cancelled when the attendant bunked. There were bedsores, soiled sheets, coughs, other illnesses–the works, as expected.

So this is the point I am trying to make: there are many forms of medical problems where we have around us a base of people who understand, and help (or try to). Go to the chemist and say, “My father’s bed-ridden”, and hey, he’ll not just give you bedpans and pisspots and surgical spirit, he’ll add his recommendations on mattresses and other stuff. People know about these things; they accept you may need help, and try to.

Even if they don’t help, they at least move back and let you do what needs to be done.

People also know you could be less available because of this responsibility. If I called up a client to say I couldn’t come for a meeting because my father, a bed-ridden diabetic, had an emergency, well, they understood. They may not have been happy about it, but they didn’t think I was lying or exaggerating or something.

When we were looking after my father, we operated in an environment where everyone acknowledged that he needed care, and that we were caregivers. There were some people who criticized, of course, and found fault with our decisions and claimed we were not doing it well enough, but no one contested the fact that my father needed care.

No one said: treat him with respect and stop interfering with his life. Let him alone. He’s older, he doesn’t need you bossing around him.

Here is one way of looking at it: there’s  a critical mass in awareness about what is a serious problem that affects the patient and family and may need care and adjustments, and the awareness of the problems my father had–diabetes, fractures, strokes, hypertension (and the bouquet of them all arranged together)–was well above this critical mass.

But when my mother started slipping into dementia, no one realized she needed special care. Not my mother, not I or my family, not neighbors, friends, colleagues, distant family. Life with my mother was assumed to be–by all of us–the same as life with any “normal” elder, and her problems seen as old-age.

Soon enough, the problems became obvious to the immediate family. We guessed that she needed special attention, but this was not accepted by either my mother or anyone else. Our attempts to provide suitable care and caution were labeled as interference or bossiness or disrespect (this younger generation neglects elders, look at them, those ungrateful so-and-sos!!) When I took steps to prevent her from wandering (a very common problem in dementia) I was pulled up for “confining” her, and even placing her under “house arrest”. My attempts to tell people that questions stress her were seen as insulting her or visitors or lying or whatever.

This is my dream: I dream of a day when people recognize dementia early enough. Here, around us, in India. When awareness of dementia and caregiving is high enough, even in India. When, if a person says his mother has been diagnosed with dementia, someone will make him take out a pad, and give him a bunch of pointers on what he needs to be ready for. Guide him to a support group, point him to books and videos that explain. Sends him to organizations that provide trained attendants.

Here is a fact: Caregiving for dementia is not a matter of a few days. Or a few weeks or months. Caregiving for dementia stretches for years, often over a decadeIrreversible dementia is a terminal condition. Patients die of dementia; they do not get cured. If we have to care well for them, we need to plan for it at least as much as, if not more, as we plan for any other terminal condition. Care will extend for years; how can such care be given without making adjustments?

I know all this now, having learnt it the hard way.

When I meet someone who has a family member with dementia, I try to tell them enough to prepare them for the journey ahead without frightening them too much.  Some listen to me, but others do not, because there are plenty of people who pooh-paah such “negative” advice and tell them to be “positive” and hoping things will get better. As awareness grows, maybe families will be able to handle care better because there are enough people around them, enough acceptance and knowledge, for families to accept that caring for a dementia patient will mean making major adjustments and planning quite a bit.

Me, I bumbled through for years, not knowing I had become a caregiver, not suspecting how caregiving would affect every part of my life…


More blog entries on caregiver role and identity are available here: Caregiver Role.

Resource page to prepare for the caregiver role is available here: Understand the caregiver’s role


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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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