Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.
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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.
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caregivers and their new planet

My focus in this post is the social isolation caregivers experience, a theme I have explored in previous posts, and a common problem caregivers face.

All of us shed old friends and acquaintances as time passes. School friends are forgotten, people who shared the same hobbies fall away as their hobbies or ours change. We leave a job, and our contact with old colleagues withers away. We move to another city. Children and siblings move away and marry. Many of these just happen, as a type of growing apart, when things that bind us are not relevant any more. Most of the time, we may not even notice them.

Some partings, though, do bring sorrow–those not initiated by us, or those with a lot of bitterness/ acrimony. Breakups. Divorces. Deaths. Fights. Misunderstandings. Each of these takes a toll, diminishing us in some way.

But then, there are new connections, too. A new lover, a new set of colleagues, a new community joined. A child born, a marriage that connects you to a new family. Some of these changes enrich us, some are unpleasant (a horrible boss, a tyrannical in-law).
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beyond acceptance in caregiving–the journey through unknown territories

When I was twelve, a palm-reader told me most authoritatively that I would travel extensively through unknown lands after I crossed the age of forty. I believed him, especially when an expert astrologer said much the same thing based on my janampatri (birth-chart). Then, at forty, when I should have been planning my world tours, I got drawn into caregiving, and I said, well, so much so for all those predictions 🙂

Looking back, though, caregiving has been a journey through unknown lands, albeit of the internal kind and not quite the sort I expected. Like any adventure, it has involved unexpected situations and needed creativity and improvisations, and below I am sharing some of the landscapes I have viewed…

The landscape of parents, seen as a fellow-adult -Too many of my friends and colleagues stay ambivalent in their attitude towards their parents. Some dislike them, even hate them, and never get the time (or energy or will) to resolve this in time–it rankles inside them for years, and sometimes becomes a core that is so heavily shielded they don’t venture anywhere near it.  They react to their parents as if they were still children being imposed on, and move away physically/ emotionally as soon as possible, staying distant. The discomfort is palpable.
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Burnout and admitting that caregiving is not that easy

Admitting that you are finding something difficult takes courage, especially if it is not ‘politically correct’ to do so.

Which is what makes a couple of videos posted by Julie Winokur and Ed Kashi unique. A filmmaker and a photojournalist, this couple relocated and redesigned their life to look after Julie’s 80+ father, a dementia patient. As active professionals, with a young son and daughter, this meant a change in what their daughter called ‘a bunch of things’. The couple started out their caregiving journey feeling they were ready, that they were experts, only to realize as time progressed that no one can ever be ready for such a task.
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