Let’s share experiences on early symptoms of dementia

It’s been a while since I posted, mainly because I had several ideas and was not able to decide which one to pursue, but I’ve finally picked one idea to give a try, related to a major concern area I have: simple, effective ways to share experiences.

When I talk to caregivers, they often say they’d like to share their experiences, but don’t know how to. I’ve seen some Facebook forums that are excellent mutual support communities, but their contents are not visible to the public. Dedicated bulletin boards, too, are often private. What we also need are ways where caregivers can share publicly, even if they don’t want to reveal their identity.

So I’m trying my idea here to gather your experiences on one topic. If it works, I may repeat this for other topics.

I am inviting you, family members and friends of persons with dementia, to write a comment about some changed behavior shown by a person before he/ she was diagnosed with dementia. Perhaps this was something that made you contact a doctor. Or perhaps the behavior just felt odd, and it was only much later that you wondered whether that had been an early sign of dementia.

Add your comment to this blog post. It won’t take much time. Just describe an incident in a way such that someone reading your comment can picture it. So, instead of saying, “my mother’s behavior changed”, tell us something we can imagine, like: “My mother used to love socializing and also planning the menu for visitors. Then she stopped planning menus. She even began avoiding people. Maybe she had started facing dementia type of problems.”

I know many of you have hesitated sharing in some forums because of privacy concerns. Or you didn’t know an easy way to share. If so, posting a comment below may work for you, because you don’t have to give your real and full name; use a pseudonym or give part of your name or your initials. And your email id will not be visible when your comment goes live. Your privacy is ensured when your comment is visible.

So it’s over to you…

Please remember that every shared experience matters. The few minutes you take may help some other caregiver. It may help someone realize that the behavior they are seeing may need investigation.

Here’s all you need to do: Just scroll down a bit and you’ll find the place where you can leave a reply. Share any personal experience of changed behavior of a loved one before he/ she was diagnosed with dementia–the sort of behavior that, looking back, you think might have been an early warning sign of dementia. (And don’t worry about how well you write and all that, just write whatever comes from your heart 🙂 )

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Hints and misses

In those early years, before my mother was diagnosed, and in the period just after, there were several small things that struck us as odd or surprisingly hurtful.

I did not piece them together into ‘dementia behavior.’ I saw in them patterns that indicated out-of-touch with contemporary life, unfair use of ‘authority’, lack of love, inconsideration, and worse. I responded by withdrawing, hurt and bewildered (what had I done to deserve this), and an occasional protest. I did make some attempts to explain and understand; often these seemed to go well, but within a few hours, my mother was back at accusing me of all sorts of motives and complaining about me to anyone and everyone. Often when I meet caregivers now, I find them going through the same phase of hurt/ bewilderment/ frustration/ helplessness. Many are angry, others are sad, but helplessness about how to cope underlies most situations.

Some problems I faced were minor irritants, some were major issues. In today’s post, I’ll share some of the minor ones, which could have been taken as hints of her condition had I been better informed:
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Pattern spotting

Yesterday, I wrote: “…the most prominent mistake I made in the earlier days was force-fitting patterns instead of looking afresh at facts, and seeing intention where the cause was confusion. ”

Analyzing, introspecting, recognizing patterns is an ability I’ve always tried to nurture and improve. I have assumed that these are good and important, and the best way to navigate life. Yet pattern-seeking backfired on me for the caregiving aspect of my life.

Here, for example, is one small but indicative incident (this was well before my mother was diagnosed).

My mother’s balance problems were very marked, and often, as she stood or walked, she would lurch and sway and stumble/ fall. This would happen anywhere, and she’d grab at whatever she could. Once, when she was in the kitchen, she grabbed at a knife on the kitchen counter, ouch! 😦
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Were those signs of impending dementia?

In 1990, I published my first book, co-authored with my husband. We were both very thrilled with the milestone, and presented a copy to my parents. The book, What Every Manager Should Know About Computers, was (according to us) a very simple introduction to computers. We assumed anyone would be able to read and enjoy it, especially proud parents. (or at least they could pretend to do so).

Well, my father tried reading it. He read two chapters, then gave up, but he did say that maybe, if he was younger, he would have been able to read more. He then switched back to the bestseller he was reading.
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