Tag Archives: Alzheimer's and friendship

When an Azheimer’s Spouse Resists

Yes, it’s been months. Life with Ralph  did not  seem to be changing much, but now I think we are in a new stage that deserves recording.

In October Ralph was accepted in a highly respected local ACE program for those with Alzheimer’s. I had added him to the waiting list several months earlier. on the suggestion of caregivers who I had a feeling Ralph was not ready to be in a group that acknowledged the members have Alzheimer’s but I was warned that it can take years before someone is accepted and I figured that by then he would be ready.

When the call came that there was an opening, I wasn’t sure what to do, but I talked to others in my support group whose spouses had been in the program and they all recommended I try it out. So for the last month Ralph has been attending three days a week. Each four hour visit includes some combination of physical exercise, mental games like trivia, visits with the preschool children in the same facility, music with visiting musicians, art projects, and lunch, snacks and conversation.

The first week or so Ralph was as enthusiastic as he gets about any activity these days. Then one afternoon he came home complaining that he found the group depressing. Evidently, as I learned later from a volunteer, one of the members had become weepy as people talked about their pasts.

He began to get resistant and say it was a waste of time. When he complained that he didn’t do anything while there, I showed him the note handed out after each session spelling out that day’s events; invariably Ralph is specifically mentioned as an active participant. I told that he seemed more energized now. And he generally came around to the idea that getting out and seeing people—he actually did talk specifically about Mamou, a tall distinguished looking man I’d noticed as someone who seemed to be at Ralph’s cognitive level—was better than sitting in a chair all day everyday even if there was no other specific value. I told my support group of his resistance and they agreed I should push him to continue despite his resistance.

But then a combination of doctor appointments I couldn’t reschedule and Thanksgiving recess meant Ralph missed over a week of meetings. This morning when I told him he was going back, he couldn’t quite remember what the program was, but then he became indignant and flared up in stubborn anger at the idea. 

“Those old people have mental problems. They are depressing. I won’t go.”  He glared at me from deep in his chair that he had no intention of leaving. I told him all the reasons to attend I always tell him (without actually using the word Alzheimer’s), but he was adamant. I remembered times when my children resisted going to preschool or other activity as toddlers. Only they were small and I had physical control. Ralph weighs 200 pounds. I didn’t quake before his anger but I did cave.

At 9:30 I emailed the leaders and said he would not be there when it began at ten and that he didn’t want to continue so we were giving up his place. He watched me type, asked why it was taking me so long, reiterated that he didn’t want to go.

Reluctantly I hit send.

What did you say exactly. I don’t want to shame anyone.”

“Just that you had decided not to continue.”

“Do you think I should keep going?”

“Yes.”

“Why?

I listed the same set of reasons I had listed all morning and that he had rejected.

I don’t mind going. It’s as good a way as any to spend my time.

Quickly, and with some embarrassment for myself,  I emailed again that Ralph had changed his mind and would be there after all. Then we got in the car. 

Usually I drop him at the front door, but today I walked in with him just to see and make sure the leaders got my second message. They had and as I left Ralph didn’t bother to say goodbye. He was too busy chatting with his Mamou.

Frankly the morning depleted me. And I have a feeling more mornings like this are coming my way.

Mourning Friends’ Deaths–A Startling Blip in our Alzheimer’s Routine

I haven’t been posting much lately because our life with Alzheimer’s has been sloping so gently that there is little about Ralph’s situation I haven’t already discussed. However, last weekend was a noticeable blip on the static screen of our physical and emotional schedule.I continue to ponder the experience and what it says about Ralph and me now.
In November Ralph’s oldest friend Jim had died in Atlanta. Ralph and Jim met in high school and although their lives had moved in somewhat different directions, the two remained friends and saw other regularly over the years, at least until Rick’s cognitive decline, along with our move to Nola, made Ralph less interested in keeping up with anyone. Somewhere along the line he lost Jim’s phone number, but during the height of Covid I messaged Jim through Facebook suggesting he call Ralph. I didn’t hear back directly but asked Ralph frequently over the next few days if they’d talked;. One afternoon he nodded, “Yes, we talked this morning,”  but showed no memory of or interest in the conversation. Thinking back, I could kick myself for not checking his phone right then and saving Jim’s phone number  I did neither, big mistake. When Jim’s distraught widow contacted us to say he’d died, I was the one who talked to her at length, but Ralph was visibly shaken Ito a degree I had seen only once before—when my father, whom Ralph loved from the moment they met, died

I tentatively brought up attending the memorial scheduled for January. Jim’s widow made it clear it would mean a great deal to the family for Ralph to  take part. I have learned (the hard way) not to  push Ralph into activities—even those I think would be good for him—and to let him set the pace. But Ralph seemed enthusiastic. “I wouldn’t miss it for the world.”

Of course as the day approached Ralph’s enthusiasm waned. He’d forgotten we were going, only sporadically remembered that Jim had died. Still, he passively went along when I reminded him the night before and again Friday morning that we were driving that day to Atlanta for the Memorial Celebration at Manuel’s Tavern the next afternoon. 

Manuel’s Tavern, a bar known as a gathering spot for liberal and leftist activists was a fixture of Ralph and Jim’s youth as political hell-raisers. In fact both were banned from the bar at different times. (I don’t know why Jim was; Ralph was banned because he foolishly brought his mother, whom I’ll  euphemistically call a character, and she got into a fight with another patron.) Jim had stayed politically active; Ralph had become a entrepreneur, even briefly flirted with libertarianism before returning to the liberal fold. Except for Jim, he had lost contact with his old comrades. 

During the eight hour drive Ralph veered between “I am dreading this” and “I wonder who will be there” He tried to dredge up names of old (literally) radicals from the sixties, most of whom I didn’t know since I met Ralph in the early 1970s while we worked at an underground paper called the Great Speckled Bird. Aside from Jim’s family, the only people I knew we would be seeing were Ralph’s first wife and her husband; I’d been emailing with her. I was beginning to wonder if I’d made a mistake dragging him so far. Then we checked into a small hotel in what used to be a flop house in our old neighborhood and discovered the hallways were lined with framed covers of the Bird. It was an eerie beginning.

The memorial celebration itself was intense but meaningful. The first thing we saw walking in was a prominently displayed picture of Jim as a young man, a photo Ralph had taken. Jim’s widow acknowledged in her speech how much it meant to her that Jim’s oldest friend had traveled so far to be there. Ralph nodded and murmured agreement as she and Jim’s sons discussed Jim’s life. And when one of his sons brought up the influence Jim’s mother Noreen had had on all their lives Ralph teared up. Noreen had been like a second mother, introducing him to ideas and conversations, but more important giving him the emotional support, 

he’d never had in his own home. After the speeches he talked to Jim’s widow and two of the sons at length with graciousness and heartfelt emotions. This was a Ralph I seldom see, and frankly seldom saw before Alzheimer’s.

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about 

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about Jim.

Since then he has not mentioned our trip but every so often asks either  “Who died again? Or “So what did Jim die of?”

Meanwhile, the night after the ceremony I learned that my oldest friend, whom I’d known practically from birth since our mothers were best friends, had finally succumbed the cancer that he’d been fighting for over a year. It was not a surprise, but his widow sounded disconsolate. And today, as I was writing this post, I was interrupted by by my phone beeping—another close friend calling to say her husband had died unexpectedly two days ago. She described herself as numb.

Death is obviously on my mind.  But not only death. Also the complexity of marriage, the complicated grief of the widows.  And the complicated maze my marriage has become, the rare but real glimmers I get of Ralph’s true self punctuating the gray twilight he inhabits most of the time. And how confused my own feelings become.