Support group

Every Wednesday night that I can, I attend a support group meeting at Mom’s Alz center. It is the only weekly support group in town for Alzheimer’s caregivers – all of the others that I’ve ever seen listed meet just once per month, which doesn’t feel like nearly often enough. Before Mom moved into the center, I had visited it twice before but did not stick around. The first time, Mom had been recently diagnosed and I barely knew what to say. The doctor who ran the group asked me lots of questions, and he told me I needed to take her car keys away, pronto. I felt that I was being scolded. I could not imagine what would happen to my life if Mom stopped driving. I didn’t want to imagine what might happen if she had an accident. I was being told something I didn’t want to hear, and I didn’t go back. For a very long time. Of course, now that I know him, I realize he didn’t say that to be hurtful. I have heard him say it to others. It’s one of the hardest things for a caregiver to do, and one of the most important safety steps we have to take.

I went again not so terribly long ago. Perhaps a year or so ago, when the stress of being Mom’s caregiver was becoming too much for me to bear, I think I gave it another try. My memory of that session is not as clear. I don’t think anything bad happened. I think it must not have felt like a very good fit. Or something like that.

Now, with Mom in the center for just three full months, I have become a regular in the group. The other regulars have a stronger bond, I think, with each other, but I now feel that it is a good fit for me as well, and I know everyone a little better each week. There aren’t a whole lot of us. There is a man and his daughter, whose wife and mother have lived at the center for about 2 1/2 years. They have been experiencing the disease for 16 years, I believe. The man quotes a few phrases about having a spouse with Alzheimer’s that I think ring very true: It is like a funeral that never ends, and the caregiving spouses are widows and widowers with living partners. There is another man who has been caring for his wife for 10 years. He is very vocal about how hard it has been on him. He can seem gruff, and he knows it. I think his heart is completely broken. I really feel for him, and am glad he feels free to say the things he does. Last night, he seemed to want me to hug him, so I did. He’s one of those tough exterior guys who is melting on the inside, I think. There are two women caring for their husbands at home. The stories they tell are very different, because the disease manifests so differently in each patient. But they also have a lot of similarities. There is a woman whose mom has lived at the center for about three years. Before that, her mother lived with her and her husband for seven years. Her mother and mine are actually roommates, but we both agree that neither mother really seems to be aware of the other. And there is a woman whose mother lives in a nursing home in Virginia. She drives eight hours, I think it is, on as many weekends as she can to be with her mom. I can’t imagine the depth of her fatigue, making that trip. She is the writer of a blog in my blogroll, “Memories From My LIfe.”

Occasionally new people drop in to get a feel for what they’re in for shortly after a diagnosis in their family. A man whose mother died a year or so ago sometimes comes to talk because he still feels the grief of that loss. People who need to speak to the doctor time their visits during or after the group so they can meet with him. And nursing and social work students in geriatrics rotations attend sometimes to learn a thing or two about the disease and its impact on families. But there seems to be this core group that attends every week, and I have come to look forward to the meetings. There is a certain comfort in knowing we are all on common ground that can feel very unsteady under our feet. Certainly, we often laugh. We marvel at the problem-solving skills developed over time to ease life for the patient and for ourselves. We get lots of advice and information from each other, and from the doctor who typically runs the group. Every now and then, someone is unable to finish a sentence, or even get started, because it has been a bad week, or the pain of the losses associated with the disease are just too much that night. It’s interesting – it’s common in this setting to apologize for crying. And yet, this is one place where we should not have to apologize about how we feel. That’s why we’re drawn to each other in the first place – because having a loved one with Alzheimer’s can feel so bad.

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2 comments so far

  1. Elizabeth on

    That sounds like a great space to share and let things go; I’m glad you have the group as well as your blog Emily.

  2. momsbrain on

    Thanks, Elizabeth. It is a nice group – and another therapeutic activity, one of many…


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