Tag Archives: Holidays with Alzheimer’s

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

 

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.”

Celebration Amid Stress

flowers                                              my bouquet from Ralph (with help from our daughter)

 

For most of this autumn all I could think about/write about was the tractor (back in the shop for yet more repairs due to user-error I suspect), which became the symbol of the stresses of life with a spouse on the Alzheimer’s spectrum. Now I find myself writing yet a happy description of our life for the second time in a row! Perhaps we have reached another plateau or perhaps I have adjusted to whatever plateau we have been on for a while…

The dangerous temptation to think Ralph is somehow getting “better” also pops into my mind, especially because as always happens, visitors over Thanksgiving commented that Ralph seemed better than they expected. He was better that usual because as also often happens, he is more alert and less passive around others—if he’s comfortable with them–than when alone with me. Since he was also the more genial, gentler post-diagnosis Ralph, he was a generally entertaining presence.

Not that rough patches didn’t abound in an eight-day week with a houseful of guests on the farm. But the stress caused by the tensions and physical ailments of other family members and friends had nothing to do with Ralph. If anything, he helped smooth some of the week’s rougher patches.

He also began to enjoy his grandfather role more, both with his older grandkids and with his namesake grandbaby whom he began to hold and cuddle even without being asked. In fact this morning, in our suddenly quiet house, he said he missed BabyRalph—who though exhausting was certainly not a cause of stress.

And Ralph really got into the small-scale festivities surrounding our 40th wedding anniversary. Actually so did our kids, who did a kind of countdown to midnight (and made us stay up way past our bedtimes) on anniversary eve, then opened a bottle of bubbly that we all shared while listening to the John Prine/ Iris Dement duet of “In Spite of Ourselves” that is considered by some to be “our song.” As we all shared that moment of silliness and laughing, a moment of euphoria, part of me couldn’t help observing in a kind of awe that I was having an experience with Ralph that I haven’t for a long, long time—the sense of being on equal footing, of standing together on the same ground, of being a wife more than a caregiver, of being loved not simply needed.

 

 

 

 

 

Joy Still Happens

Today we went on our annual Christmas tree hunt. We have cut down a tree on the farm almost every Christmas since we moved down here.

Ralph and I still remember the first time, 25 years ago. Piled into our old Suburban with our two kids, our friend Amelia and our two dogs, we drove all over the land we had just purchased. We didn’t know our way exactly and the roads were overgrown so we got stuck several times as well as a little lost, although Ralph wouldn’t admit it. He shot mistletoe out of some very tall trees—who knew that’s where you found mistletoe—and cut down two beautiful pines, one for our family and one for Amelia’s. Then we drank hot chocolate. It could not have been more greeting card perfect.

But of course life changes. Amelia moved out of our lives. The dogs died and were replaced by several generations of new pets. The kids grew up and although they have never have missed a Christmas yet, I worry every year that this season will be our last together as a family. Then there is the change in Ralph himself. He used to be the center of activity and now often prefers the sidelines, napping when the others go off on adventures.

And it has become harder to find a decent pine. There aren’t as many out there, either because we cut down the good ones or let them grow too large. For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields. But this year there is no one around but the two of us.

So I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went. Although our paths were mowed during the recent wedding preparations, the grasses are back up high and it was our normal bumpy ride, but at least there was no rain and it wasn’t too cold.

Soon, not far from our pond, we noticed a tree with potential, despite a flat side. I suggested we tag it with a pink ribbon, but Ralph insisted that he would remember where it was. After a lot more driving, also jumping out of the truck opening gates and stomping through high grasses, we found another tree, a tall one in a thicket of our old cow pasture. This one I made him tag. We spotted our third possibility in the fenced pasture directly behind the house. Ralph was happy to tag this one, and I took a picture to compare to our other choices.

By now Ralph had no clue where the other two choices were—or that we had seen other potential choices at all. As he followed my directions back across the pond, we joked about his memory in a way we don’t any more. And then we agreed, almost casually, that his condition was likely to get worse. Ralph’s potential future with Alzheimer’s has become the elephant we don’t always acknowledge taking up half the room, but in that moment of acceptance, it seemed less scary.

Because we were having too much fun. Both of us. There we were, two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great.

Lately I worry that we no longer connect as equals. It bothers me that Ralph is not interested in all the issues and concepts we used to discuss/argue about so energetically. Not only has he lost his appetite for current events but what is worse, he doesn’t want to challenge me about anything more important than whether he’s taken his pills. When he talks about the dog and the weather or repeats and repeats his anxiety about some mundane issue that has long been settled, I feel myself patronizing him. Not a good feeling. I have to remind myself who he has been in his life.

But this afternoon I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.