A support group meeting I hope to attend will be including an expert who will talk on palliative care. I am really looking forward to this meeting. Such meetings provide me a forum to share my experiences and insights with others, and also get input from them. There’s nothing as effective as interacting with fellow-travelers on this caregiving journey, where we get a compassionate and helpful environment to understand how we can handle our roles effectively.

The meeting is particularly welcome right now because of my changed caregiving situation.

Around three months ago, my mother slipped into a bed-ridden state. She nods and smiles occasionally, but does not talk, except for a word or two–around five words a day 😦  .  She cannot prop herself up on bed, or turn sides without assistance.  As I, along with the medical and nursing resources available to me, examine ways to improve her situation, I am also trying to adjust to this new reality. Stuff that was priority a few months ago seems trivial, or at least, not important in my immediate context, and I am redefining my life.

One casualty along the way has been my blogging. It is as if I had decided that I will blog only when I am free to do so, and when I am feeling good and relaxed enough to compose something. I suspect that’s not going to be likely for a while, and so I am wondering whether I should blog anyway, even if the posts are small, to share my current caregiving situation and the thoughts it brings to me. I haven’t decided yet, but perhaps there is a merit in sharing this part of my life as it happens…

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Dementia support groups, dementia caregiving

I have often written about the overwhelm of caregiving, and this post is my expression of gratitude to what has most lightened the burden of it all… my support group.

For many years, I was not aware of any support groups in my city. Last year, after a rather traumatic personal experience, when I realized how very isolated I had become, I knew I needed help, but I hesitated. Wasn’t a support group just a group of people sharing negative vibes, pulling each other down? Did I have the time to go and listen to a bunch of people, all probably as overwhelmed as me, or more? What possible good would it do? Better to sleep off or read a book or go to a Barista or Cafe Coffee Day and have chocolate icecream 🙂

I contacted the local dementia organization that coordinated the support group. I asked them for any reading material they had. They invited me to visit. The first phone call lasted around an hour, and the coordinator was so full of practical tips and empathy that my sense of loneliness vanished. She invited me to drop by at her office and discuss my problems further, which I did. The openness with which she and her colleagues listened was a drastic change after years of people not believing me–it was like I had come home.
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