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.

I have attended quite a few support group meetings after that.  Every meeting has been worth the effort. I get to hear the experience of others, I get to share my own, the pluses, and the minuses. I meet doctors and counselors working in the area of dementia care–I learn from them, and maybe they, too, gain by interacting with caregivers who are willing to honestly share the joys and sorrows, their problems and creative solutions.

A few years ago, I saw attending a ‘support group’ meeting as a sign of weakness, as an activity that would be a waste of time at best, and a negative event otherwise. How very wrong I was. Many of us attending may be overwhelmed, but then there are others who have found ways out, and help us with suggestions. There is no judgment, no criticism–we understand each other in a way that defies description. Participating in the meetings gives us an opportunity to feel we are not alone in facing the problems, it gives a sense of perspective, and often a new insight. Each meeting moves us ahead.

I think some professions (official or otherwise) are lonely and isolating by their very nature. As a caregiver, there are often days, even weeks on end when I don’t get to have any conversation with a ‘normal’ person. Spending all the time with someone whose memory is patchy can be unnerving however well-prepared one is, and facing the process of dying is frightening in itself. There is a saying that when a person is diagnosed with dementia, there are two patients in the house, the patient, and his/ her caregiver. Another term often used to describe the day of a dementia caregiver is a “36 hour day”. Yet, caregivers rarely get their due recognition as persons from others, who, from their safe distance, do not understand how different dementia-based problems are from normal elder caregiving.  Dementia patients often retain a semblance of social skills and successfully hide their condition in short social situations; this makes outsiders view caregiver fatigue or overwhelm as a sign of weakness or a negative,  lazy attitude. Meeting other caregivers, meeting people who know and believe, is such a welcome relief.

What the support group and the organizations supporting it has done to me would have been unimaginable a few years ago. It has helped me accept more wholeheartedly my role as a caregiver, it has even given me tools by which I can enjoy parts of it and even look forward to some aspects of it. I now find it easier to communicate with my mother and there is a distinct drop in her levels of frustration and agitation. It is a win-win situation all around for us. I am more creative in  my interactions with her, and though the fatigue does recur often enough, there are also many moments of contentment, even joy, that we share regularly.

My regular contact with the support group has helped me move beyond acceptance of caregiving to perceiving its joys …and that is a blessing. The happy moments I experience give me the momentum to move through the not-so-happy ones, and they give me hope.

And hope is the best gift possible when one is overwhelmed 🙂

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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 (or its Hindi version, For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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