Tag Archives: Alzheimer’s socializing

Back Into the Fray: Adjusting To Ralph’s Alzheimer’s world as the Real World Re-0pens

In the first years after Ralph was diagnosed with MCI, I rushed to record all the nuances of his condition and my reactions. Lately not so much. The nuances have become…well repetitive: Ralph’s moments of clarity and confusion, my moments of impatience and remorse, his conversational loops, my problem-solving to work around his lapses. Intellectually I know there has been a slow deterioration but after six years, I don’t notice so much. My life is what it is. Even the last 18 months in a Covid world have made a minimal impact. The routine we inhabit reduces the impact of Ralph’s limitations. 

But a new wrinkle has cropped up:

Now that vaccinations have arrived, so have visitors. I’ve been worrying for months that the new house was too big for us, but it is suddenly the perfect size for the influx of friends and family members who love that’s we’re only a block and a half a block from the streetcar line. Our guest room has been booked for weeks and will be until mid June. I already have “reservations” for the fall.

I suddenly have company for eating, shopping and hanging out, even for watching TV, all the activities in which Ralph is reluctant to participate.

The issue I have to figure out is how to incorporate Ralph. How much to push him to engage, how much to let him be. So far the visitors have been folks who know him know him well and have known him both before and since his diagnosis so Ralph has been comfortable. 

Most recently my oldest friend—we met in preschool—and her husband stayed for five days. While we have seen each other for brief visits (and I have visited them solo quite often), we last spent this much concentrated time together barely a month after Ralph received his initial diagnosis of MCI when we met for a vacation in Savannah.  Back then Ralph was still very much himself in most ways. The only symptom was his tendency to repeat himself, so although our friends knew about the diagnosis they barely noticed any change. That is until he had a panic attack; the husband was alone with Ralph at the time and clearly shaken when Ralph became frantic to find me. His newly prescribed meds, including an anti-anxiety pill, had not yet kicked in and he was petrified and slightly disoriented.

This visit, there were no anxiety attacks. There was a moment at dinner the first night when Ralph did start to fixate on how long the waiter was taking to bring his drink and my anxiety rose because I sensed a loop starting to take shape. But the beer arrived and Ralph settled down before our friends seemed to notice.  Ralph was charming and chatty the rest of the evening. “

He’s better than I expected,” my friend’s husband said with obvious relief, a relief I shared.

The next few days we ate together as a foursome some of the time, and other times Ralph opted to stay in his chair with the dogs at his feet while I took our friends to explore the city. Ralph appeared to enjoy the company although each morning I had to remind him we had guests in the house and who they were. 

At one point as we were driving somewhere as a foursome, women in front, men in back, Ralph joked that the wives would some day be sticking the husbands in facilities once they were “out of it and incontinent.” Everyone laughed as if such a possibility was unimaginable. But I can imagine all too well. 

By the fourth day of being around Ralph, my friend commented on how hard caring for Ralph day in and day out must be. I appreciated her awareness even as I bristled with a certain defensiveness. “Oh it’s not that bad. I’m used to it.”

And I am used to Ralph as he is now, even comfortable with it as long as we’re just the two of us. But as I reconnect with the world outside our front gate, I find myself less and less comfortable. My challenge is now to find a way to give Ralph the comfortable security he needs while keeping myself invigorated and challenged.

Our New Best Alzheimer’s Buddies

 

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So the other we got together with a couple we met years ago and always liked although we saw each other mostly at parties thrown by mutual friends. Or at the grocery store—actually I have run into the couple surprising often at Publix, every six months or so. We always end up talking in the aisle for ages, promising to call to make a date that never happens.

We got together this time through another mutual friend who thought the couple might be interested in buying our farm. At her suggestion I called “Jo” and “Jordan” who invited me to stop by their house in town to talk. I had another meeting scheduled at 2 so I dropped by at one for a quick visit. Once I sat down, it became clear we had more than real estate to discuss.

One of them Jo has been having some memory and confusion issues. Their internist, (who happens to be my internist as well) recently sent them to a local psychologist who gave Jo the ten minute memory test, which Jo passed.  But Jo and Jordan both sense something is wrong. And they know, because I told them one day in the bread aisle, about Ralph’s diagnosis.

So for an hour they talked about the problems Jo has been having and asked me questions in an atmosphere of mutual trust. Before I rushed to my other appointment, we agreed they should come out to see our farm the next day (although it was clear they were not going to buy it). In the meantime I printed out research information and the phone numbers of resources.

The next afternoon Ralph and I spent several hours with Jo and Jordan. It was different from any other socializing we have done in years.  We all chatted a little. Than while Ralph took Jordan off to show off the farm, I spent time with Jo. Then we all spent time talking together, going deep and honest fast. We shared details and insights about our current situation. Ralph was articulate about what he feels and struggles with, as was Jo. Whether or not Jo’s cognitive problems will lead to a diagnosis similar to Ralph’s, they share similar difficulties and it was obviously they found describing their problems to each other easier than they have to outsider.

“Oh yeah, I get that.” was the mood of the afternoon.

So what made the afternoon so special, was that it was so relaxing. Ralph and Jo didn’t feel forced to be together, the way Ralph felt when he the support group (at my insistence), but it was obvious he and Jo could talk openly in a way Jo never would normally in a group. There was no anxiety about trying to keep up.  Instead there was laughter over the kind of memory jokes my friends and family would probably never make in their sensitivity to Ralph’s condition. But we could with another couple facing the same issues. God it felt good.

Of course, the bittersweet news is that we’re moving away soon, but meanwhile I envision spending quite a bit of time with our new best friends. And once we move, finding Alzheimer’s friends is going to be a priority, one I’ve not really considered until now.

When Forgetting The Past Becomes Remembering the Present Wrong

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“So, Alice, when do we have to leave for the birthday party”

I come home at five in the afternoon to find my husband showered, shaved, and dressed in a clean shirt. Sounds great, doesn’t it, Ralph getting ready on his own?

Only problem is that the  party he is talking about is a dinner I wrote about here weeks ago. The one he clearly didn’t enjoy attending at the time.

“We aren’t going to a birthday party.”

“Are you sure. Well, why did I think we were?” Puzzlement all over his usually placid face.

“I’m don’t know. We had dinner for H’s retirement three weeks ago.”

“We did? I don’t remember.” It is almost physical, how hard he is thinking before a memory takes shape. “Oh yeah, it was boring. Well, I’m relieved. I spent all afternoon dreading the birthday party.”

“Since you’re dressed, why don’t we go out to supper?”

“I don’t feel like going out. It’s too late.”

“Are you sure.” He is spiffed up after all, and it would be good to get him out of the house and his rut. Also, frankly, I wouldn’t mind not having to cook.

“No, I don’t feel like going out anywhere.” He shakes his head, standing by the door to the porch. “You sure you didn’t tell me we had to go to a party tonight. Why would I think we were going to a party?”

“I promise, we went to dinner for H’s retirement three weeks ago. Maybe you had a dream while napping and it felt real?”

“Maybe.” He shrugs and heads onto the porch, unlit cigarette already  in one hand, beer in the other, dog at his heels. We will repeat the same conversation throughout dinner but now, clearly shaken, he needs time to himself (as do I).

The way that facts once forgotten can’t be retrieved has become our normal problem as an Alzheimer’s couple, annoying but easily handled. But now Ralph has presented me with a created, or rather mis-created memory. A new process has misremembered, twisted and reshaped a fact before lodging it in Ralph’s brain. Will our new normal problem encompass not simply a loss of Ralph’s sense of the past but a reshaping of his present reality into something unpredictable, unreliable and disturbing.

A Birthday Gift to REMEMBER

 

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We had a small dinner party for Ralph’s birthday last week. His favorite roast chicken and the above birthday cake, which made him laugh. As long as his sense of humor holds I figure we are doing ok.

As we stood around waiting for the chicken to come out of the over (a slight mechanical failure in pushing buttons having caused the cooking time to stretch longer than expected),  conversation turned mildly political. No one was disagreeing but people were analyzing causes and results.

Ralph suddenly became very heated, in a way he never gets these days, and accused a friend of talking down to him. Shortly afterwards he headed out to the porch, to smoke I assumed. A few minutes later he was back, relaxed and charming.

The same friend who’d just upset Ralph began discussing how his poor hearing has created problems for him when he has conversations. I could see Ralph was listening carefully and that the two men were bonding in a new way. Without any overt statement they were acknowledging and empathizing.

I was so enjoying this pleasant moment after the earlier upset that I almost didn’t bother to check my phone when it beeped that I had a tex. I’m glad I did.

The text was from my son

“Don’t tell him I told you but dad just told me he couldn’t keep up with ur convo and felt like he was ‘slipping’. Maybe make sure he’s being included. I think he stepped away from table to call me or something.”

“I told him ‘who cares’ just do your own thing blah blah.”

I texted back about the little almost argument and how much better Ralph seemed.

Oh good. I mean honestly was really weird cause he sounded really really down when he called. And then I kinda said that he like did sound a lot better, like a switch flipped. Was actually eager to get off phone and get back.”

I texted back that I found it “interesting” that Ralph trusted our son enough to call him under these circumstances. They have never had an easygoing relationship. Not understanding and even a little intimidated by his bookishness, Ralph recognizes he was too hard on our son as a kid and now is almost shy around him.

“Yeah, I was surprised, it was sweet.

The rest of the evening was a rousing success, Ralph more involved and emotionally present than he’s been for some time, and more openly affectionate with our friends than I have ever seen him.

But for me, the moment of pure between father and son (and mother and son) is the birthday gift that keeps on giving.

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P.S. Speaking of gifts, after one more crisis concerning a flat tire, the tractor finally seems to be working!