Tag Archives: family reactions to Alzheimer’s

CHRISTMAS 2018: ALICE LESS IN CHARGE AND RALPH MORE ENGAGED (MAYBE)

Alzheimer's Spouse Issue, Uncategorized, , , , , , , ,

 

xmas

 

I admit I was sad not to have our traditional farm Christmas, mainly because I had no excuse to decorate the house with kitschy abandon (although a few, maybe 20, Santa Clauses did show up on shelves and mantles). But gathering with extended family in New Orleans proved much easier.

We stayed with our college age grandkids and our son in a rented duplex literally across the street from my daughter’s house, where she was in charge of festivities. Ralph and I both enjoyed ourselves, albeit separately and differently. While I was busy helping with preparations and messing around with five grandkids from almost two to almost 22, Ralph spent a lot of time smoking on the porch, either at my daughter’s house or the rental, while I could keep an eye him through my daughter’s front window. Therefore when he left the rental porch and headed down the street our first sunny afternoon, I was there to stop him.

“I’m just walking around the corner to buy cigarettes.”

“Not a good idea to go off in New Orleans by yourself.”

“I know the way there.”

He did know the way there: walk to the corner, take a right and keep straight two blocks until he got to the store. It was the way back, past those two blocks with corners that looked just like ours that be the problem. I sent my son to walk with him.

I sighed with relief and became more vigilant. I also made sure he was stocked with cigarettes. There were no more blips (well, except for a little one Christmas afternoon when we had to convince him that the store was closed).

As the holiday drew to a close, both my son and daughter commented that Ralph seemed much better than he had seemed at Thanksgiving. I had to admit I wasn’t sure I’d noticed.

It makes me nervous when anyone, but especially one of our kids, comments that Ralph seems better. No, I don’t get nervous; I get defensive.  Why do they think they can see something I’m missing?

So why did the kids see him as improved?

Well, for one thing they found him frighteningly disengaged at Thanksgiving. And they may be right. That holiday is a blur of houseguests, of cooking, cleaning, entertaining and babysitting while fighting off the remnants of congestion and cough. And given that Ralph was coming down with the cold that put him in bed for days once everyone left, he probably was more disengaged than I noticed–I do have a lingering image of Thanksgiving night, most of us gathered in a relaxed conversational circle in the living room and Ralph sitting alone just feet away in the television alcove bundled in outdoor wear staring at nothing.

Second, while I was focused on how much he slept and whether he drank too much beer at Christmas, they found him more engaged because around them he was. While all of us, Ralph in particular, could move easily back and forth across the narrow street between houses, our separate living space offered Ralph privacy both to nap whenever he wanted and to take the time he needed with his slow wake up rituals before walking over to my daughter’s house to offer everyone with some grandfatherly attention. Because he slept so much during the day, while the kids and grandkids were out exploring the neighborhood, in the evening he was rested enough to participate.

And third, by Christmas Ralph was back on his study meds, which he’d stopped taking a week of so before Thanksgiving due to scheduling issues. The study is on the value of ADHD drugs in treating apathy in those on the Alzheimer’s spectrum, and I didn’t think those little red pills were working, but now I wonder. Or maybe it was just the combination of good weather, good company, and an undemanding change of scenery. As we were packing up to leave, Ralph said how much he liked visiting New Orleans.

“Well, maybe you could start visiting more often with me.” I was thinking ahead to Mardi Gras when I plan to help grandbaby sit.

“I’d like that.” He nodded with what seemed like enthusiasm.

Now we’re home. He’s back in his mostly undemanding routine. When I brought up going back down to Nola, he looked at me askance.

“I don’t think so.”

“But you had such a good time at Christmas.”

“It was okay,” he shrugged. “But I have no interest in going again.”

Ralph’s Night to Shine (And Forget Alzheimer’s)

Alzheimer's Spouse Issue, Uncategorized, , , , , , , ,

meal

It never fails. Whenever I start complaining about my life as a caretaker spouse, events remind me to shut up, stop griping and recognize the good stuff.

Case in point, we had house full of guests last week:

My 20-something nephew living with us for the summer while doing an internship; my 13-year-old (step)granddaughter was having one of summer weeks at the farm; and a photographer from out-of-state here to defend (with my support) her local portrait project, which was being attacked as too controversial by some members of the project’s sponsoring art organization board on which I serve.

So the five of us were sitting around the dinner table, one of those big group meals at which Ralph and I used to excel and which I tend to avoid now because I hate sitting beside Ralph as he withdraws into silence unable to follow the thread of conversation. What I usually feel is a mixture of guilt that I am not finding a way to include him and impatience that he is ruining my enjoyment. (And the truth is it is my responsibility to make him comfortable in a variety of situations and I sometimes chafe under that responsibility.)

What I felt the other night was, well it was envy. Ralph was so damn charming that the three others at the table—for whom I’d been working all day to entertain in different ways—were enraptured. Even the 13-year-old, jaded as only a 13-year-old girl can be—sat up straight an listened with fascination as Ralph told his stories about meeting MLK Jr. The photographer leaned over to whisper how handsome he was. My nephew acknowledged that Ralph scared him when he was a little boy. “You weren’t mean, but you were stern,” my nephew said. The 13-year-old smiled slyly because the Ralph she knows is a pushover softie. Ralph agreed with her.

My envy reminded me how I used to feel in my introverted twenties when I was in a group setting with Ralph and he was the energy force around which everyone orbited. In those days I was obviously drawn to his charisma, if a little jealous of sharing it with others.

This envy was oddly refreshing. I admit I kind of like my new role as the social butterfly in our marriage but it can be tiring. I have become so used to being the one responsible that it took a moment for me to relax and let Ralph hold the limelight for a change. Once I did relax, what I really felt was wifely pride in Ralph’s charm. And even a little wifely love.

(But I can’t get too Pollyannish because the next day, exhausted by his social efforts, Ralph was more foggy than ever.)

The Thorn Among The Roses

Alzheimer's Family Issues, Uncategorized, , , , , , , ,

camping

 

Our fourth annual “Camp Mountain Creek” gathering of the cousins ended this morning. For the last eight days Ralph put up with three female adults (me, our niece and her friend) and four teen and preteen girls (our niece’s daughters and our granddaughter). Enough to wear out any man.

I have watched with fascination the evolution of the relationships among the girls as they mature. There used to be spats and hurt feelings that had to be soothed. This year they simply enjoyed one another. While there were shifting match ups there was no ganging up. The kids have created traditions they cling to (killer charades, skinny dipping, endless junk food) and have amassed stories they can tell and retell (scary moments, funny moments, angry moments, and serious moments like discussing racism and violence in America in light of the recent shootings). There were lots of tears when the cousins said goodbye.

I have also watched how their interactions with Ralph have changed. Four years ago he was at the center of things: taking them fishing, scaring them with ghost stories, driving them to Dairy Queen, and disciplining them on occasion.

Three years ago, they thought it was hilarious when he got a little lost on the way to McDonalds. Two years ago, they begged him to play Scattergories but he wouldn’t. Last year they couldn’t get him to tell his ghost stories.

This year we managed to get him to come with us for one meal out. He didn’t swim, despite temperatures in the nineties. He didn’t play games. He didn’t tell stories.

Mostly he enjoyed the girls’ presence at a remove. While he was not disturbed by the altered routine, the messy house, the noise, he did not go out of his way to be part of the activities. He kept up his daily routine—sleeping late, sitting on the porch, disappearing for an hour or two into his “office”, taking his afternoon nap followed by more time on the porch, dinner, and bed.

Sometimes he rallied. After enough teasing, he changed from jeans into shorts and sat with everyone by the pool one afternoon. Last night eating pizza at our last dinner together, he was as funny and engaged as ever.

The girls still adore him but they are old enough now to understand and want to discuss. I had to explain his diagnosis and what Alzheimer’s entails. The younger ones asked the older ones what he used to be like. The older ones talked about being “sad” over the changes they have noticed. They are all incredibly patient with him.

At first I was upset that they were so aware of Ralph’s diminishing self. But a friend pointed out that they were experiencing the life cycle first hand. She’s right. These girls will never forget their carefree weeks together on the farm, and sharing not only the joyful but also the bittersweet will make those memories all the more powerful. I wish I could be around to hear them reminisce about their “Uncle Ralph” and “Oppa” when they get together thirty years from now, as I have no doubt they will.

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