Steve and I were selected as one of four couples to participate in a panel discussion later this month. It is part of a Regional Alzheimer’s Disease Research Conference. We will be speaking in front of a group of about 350 people.

We started out by being interviewed a couple of months ago. Once the four couples were selected, we started meeting. The panel consists of four married couples. In three cases the husband has MCI and in the fourth case the wife has EOAD. In every case where we have met people affected by these diseases, everyone is very nice and has absolutely nothing in common. I mention that because Steve and I try to figure out if there is a common denominator, and aside from being married, we’ve found nothing.

So far the participants have met twice over dinner. We have two more scheduled meetings. At each of the meetings we have discussed specific topics. At the first meeting we spent time introducing ourselves, then moved into discussing earliest symptoms, how the problem was recognized, how the diagnosis was made and the reaction to the diagnosis.

The second week everyone felt more comfortable and we discussed how we have told others about the disease and the impact it has had on family. This is where we talked a lot about our son who has just started high school. One other couple has college-aged children, and the other couples have grown children. I talked about the double life I lead, being honest with some people and outright lying to others. Steve describes it as a “need to know” basis. For example, all of our neighbors except one think that Steve is retired. I am sometimes caught off guard when they ask if it is bothering me to have him at home. I actually enjoy the time I spend with Steve, but wish he wasn’t here at home, only because that would mean he was healthy and working. He so desperately wants to go back to work at his old company. Only time will tell if that will happen.

At our next meeting the topics are the hardest part of living with MCI or Alzheimer’s and coping strategies. For me the hardest part is the most obvious: that the love of my life has this challenge and there is nothing I can do about it. I can be as supportive as possible, prepare and serve healthy meals, encourage Steve to take walks, support his efforts to take classes, expose him to new experiences, and put him into situations where he has to socialize with people, but there is no guarantee that anything I do, or come up with to do, will keep him stable. The other things that are hard are minor in comparison, but they are that I no longer have my parents here to support us during this, continuing to be a good wife and mother, and juggling our son’s schedule and anything that needs to be scheduled for Steve. I feel bad when scheduling something for one takes away from the other in my opinion.

Answering the question about coping strategies is easy. I blog here. And frankly, I don’t focus on the problem, I try to keep a positive attitude, and I try not to think negative things about the future.

This has been an interesting experience. I like listening to everyone’s stories. I can handle the scheduling dilemmas because it’s almost over. I think the hardest part of these meetings is listening to your spouse talk about this disease and the changes it has made in them. I know I’m not the only participant who feels this way as there were a few people in tears last time.

I will write again about the panel discussion once it’s over in a couple of weeks. Ending this on a light note, I’ve already decided what I’m going to wear! At least that’s one challenge solved.

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