Listening to caregivers, respecting them, supporting them: a follow-up post

Some weeks ago, I wrote a post on non-judgmental listening being a form of support ( Listening to caregivers, respecting them, supporting them), and I was foolish enough to say I’ll do a follow-up post to share whatever feedback I’d got/ any additional thoughts, so here it is, a post to tick one more item on the three-mile long disaster called my to-do list.

Through the “listening” post, I shared my experiences and perspective as a dementia caregiver as well as a volunteer helping other dementia caregivers. I wanted to know how other caregivers felt about what I’d written–do they agree or do they have a different view? I wanted to share my thoughts and opinions with concerned non-caregivers (friends, colleagues, volunteers) and get their perspective too. So I asked for feedback on the post in various forums where members included caregivers and volunteers.

Most of us, when we read something, do not leave any comments, leaving the writer unaware of our reaction. Did we agree? Disagree? Did we benefit from what was said, or did we find it a boring ho-hum rehash of old stuff? Did any of it matter at all? This silence of the readers means that the writer has no input to consider, and refine the next article. Then we read another boring article by the same writer and say, hey, she’s still a bad writer 😦

I get feedback sometimes–as comments on the blog, through the contact form, and emails sent directly to me–and I learn from every person who writes in. When I invited comments on the above-referred post, I was hoping to get more data.

I can probably divide the feedback I got in two broad categories (1) concerned persons who are non-caregivers and (2) caregivers (current and ex-caregivers) .

Read the full post here

Listening to caregivers, respecting them, supporting them

Years ago, when I was still a newbie caregiver and very overwhelmed, a friend/ colleague made the mistake of calling me up and asking me how things were. He vaguely knew of my mother’s issues and my problems of coping, and I therefore (I’ve always been naïve) took his question to be a genuine one, and proceeded with the answer. If a squirm can be seen over a phone line, well, that explains what I perceived, but I was desperate, and here was a listener…

Or was he?

A few minutes into it, he said, (I paraphrase and abbreviate, but you’ll get the drift) “Yes, well, sorry, hmm, ya, okay, so, must be bad, huh, hmmm, yaa, so, what else is going on? Let’s talk of something hmmm, ya, well, like, well positive…so how’re things…what else…”

Utter fool that I was, I answered, “There is nothing else.” Then it registered on my slow brain that he hadn’t wanted any of this rant. He’d probably expected me to be “positive.” He’d probably just wanted a couple of good, positive sentences from me before he went on to whatever else he had called for.

A full-speed train takes a few minutes to stop after the brakes are applied; I would probably have tapered off in about five sentences but by that time he had managed to sign off the conversation anyway.

I felt bewildered and also let down. I may not have minded had he not asked at all, but asking me and then not listening…

He never called again. I don’t know whether he took a conscious decision about it; it was probably just a discomfort he felt when he thought of me, something that made him choose to make other calls instead. He probably forgot the incident.

This incident happened almost nine years ago. As far as I was concerned, I was not asking him for solutions, or even sympathy. All I did was narrate my situation in response to a question. I may have come around to the point of uttering “positive” statements that society expects, but he shut me out before that.

Overall, this was just one of the early incidents that made me start understanding how isolating caregiving could be. It is through stuff like this that I began to realize that if I talked about the realities of my life, people switched off or decided to avoid me. If I wanted company, I had to pretend my life was very different.

Read the full post here