Category Archives: Support and Research

Joining our Early Alzheimer’s Support Group

 A few posts back I wrote about my first one-on-one encounter with another spouse/caregiver. Reader “boomer98053” commented that I might consider a support group. I did more than consider, I joined one ASAP. The eight-week Early Alzheimer’s/Mild Cognitive Impairment support group I settled on was supposedly for Ralph and me, but frankly I was the one feeling the need, and what appealed to me about this group was that the caregivers met separately from those they care for.

The week before our first meeting, I soft-pedaled as I do many decisions about our lives lately, telling Ralph we were scheduled to attend a training program. I doubted he would agree to anything called a support group. Or maybe I was projecting my own ambivalence about admitting either of us was the kind of person who needed the support of strangers. In any case I expected him to protest the way he did for most of our marriage whenever I made a decision without checking with him first.

Instead, he gave only one half-hearted sigh before agreeing he’d try one session. I quickly notated his calendar but didn’t mention it again until the morning of the meeting. I have learned it’s a waste of energy to remind Ralph about activities and dates ahead of time.

No surprise that he had no memory of any meeting to attend when I did tell him. The surprise was that once he checked the calendar he was perfectly willing.

As we drove to the meeting Ralph asked, “What is this new test going to be about again? I am sick of tests.” I explained that he wasn’t going to have to take a test this time. He was just going to talk to other people with early memory loss.

Then he asked again and I explained again. And again. Anxiety definitely affects his memory (and mine).

But once we both admitted we were both anxious, we laughed and relaxed a little. He almost seemed enthusiastic.

Then, less than a block away from the parking lot, Clifton Road was blockaded. We had to turn around and follow the line of other cars trying to find a new route. Circling around to enter Clifton from the opposite direction, we got stopped again. We ended up far out of the way.

Given we were going to be late if we made it at all, I expected Ralph to suggest we head home. And I was feeling almost frustrated enough to agree.

Instead, his anxiety had morphed into concern about missing the meeting. When we arrived half an hour late, just like everyone else, he was as relieved as I was.

Before the groups divided, the facilitator asked all of us to introduce ourselves.

Glancing around the room, I vaguely recognized one of the women as someone I had known slightly years ago although I couldn’t remember how. I began to fantasize about the friendship we would build over our common care giving until I realized she was the impaired one in her family.

When it was Ralph’s turn to speak, he said simply “I have a memory problem and am taking a drug that helps.”

Wow. I cannot describe the rush of pride and love and respect I felt.

In the separate meeting of the care-giving spouses that followed, we re-introduced ourselves in more depth, describing the problems we each faced. There were about the same number of men and women, most of us in our sixties, a couple younger, several older. We, or rather our spouses, had all received relatively recent diagnoses. We were all in some degree of lingering shock.

At first as the others described their situations, Ralph didn’t seem as far along as many of the others. Although I found the group congenial, I began to wonder if I had joined us up too soon. But the more we talked the more I found myself enjoying the honesty. That others got impatient too was an enormous relief.

Ralph looked less than thrilled when we came back together after an hour. But not for the reason I expected—not because he thought he didn’t need to be there but because one woman hogged too much of the time. He told me with some pride that the social worker had complimented him on keeping a calendar and being forthright about his problem He said the rest of the group seemed perfectly normal.

He seemed downright enthusiastic about returning. In fact as soon as we got home he added all the meeting dates to come down on his calendar.

I Meet Another MCI Spouse

We are a little early for Ralph’s third of five sessions in an Emory University study on visual aids on whether certain visual clues will improve memory retention for those with MCI/Early Alzheimer’s. (There are so many studies out there right now and they all need volunteer subjects. But not every patient qualifies to be in a study. MRIs are usually required and there are often other restrictions as well but it is worth going to the Alzheimer’s Association website to check out what studies are going on in your neighborhood.)

Ralph’s study is concentrated over a two-week period. Ralph says the “homework” aides the researcher has recommended don’t help but he has returned willingly enough. I don’t sit in during the sessions but I come alone for moral support and read old magazines in the drab but not uncomfortable waiting room.

This afternoon another couple sits down in the waiting room with us before Ralph gets called in. I size them up: both husband and wife are a little older than us, probably early seventies, casually but tastefully dressed, whispering and smiling at each other with just an edge of nervousness that says they are first timers. She is lively and chatty, he more passive. Like Ralph.

But a few minutes before Ralph goes off with his researcher, another researcher comes for the wife. The husband and I are left together with the dated magazines. As we begin to chat about the weather and the time it took to get to the building, I am dying to bring up the obvious—if both of our spouses are in this study, they must both have the same diagnosis—but I don’t want to intrude on his privacy.

Before I can stop myself the letters M, C, and I are out of my mouth.

Yep, his wife is about a month behind “Ralph” in the process, not necessarily in terms of her degree of cognitive impairment but in terms of when she was diagnosed. She is seeing Doc L’s partner. She has just started the same drug (donezepril) Ralph is on. Her husband’s not sure what comes next.

I am almost giddy as we start comparing notes. There is so much to talk about that I haven’t been able to share with anyone else. Our hour or two together in that dinghy room flies by. I doubt I’ll ever see him again. I don’t know his name.

But for the first time, I realize I am not alone