For the last two weeks, Ralph and I have been discussing a trip scheduled for this Labor Day weekend to New Orleans to babysit our twelve-year-old granddaughter while my daughter and son-in-law take their “babymoon”.
I brought up the possibility to Ralph a month ago when they first asked me to help out. Since I was driving down there–Ralph has made it clear he never plans to step onto a plane again in his life–I suggested he might come along.
I suggested but assumed he would say no. Since the family moved to Louisiana a year ago, I have visited probably six times. Ralph has been once, for a family Thanksgiving, and he didn’t exactly enjoy himself. Staying in a hotel discombobulated him, and he missed his dogs.
But he must have been in a good mood when I asked, for to my surprise, he said sure he’d come. I started fantasizing (and I use that word purposely) about a pleasant weekend of good meals and maybe a visit to the WWII museum, which I told him he would love.
A week later I mentioned the trip in relation to something else going on and he didn’t remember our first discussion.
“Why are we going?” he asked.
I explained. He looked perplexed. “And I said I’d come?”
I nodded. He said, “Ok,” then promptly forgot all about the trip until the next time I brought it up. We’ve had the same conversation daily for weeks.
Each time Ralph sounded a little less enthusiastic. Meanwhile I was growing a little less enthusiastic too as the reality of what it might take to keep both him and my granddaughter happily occupied began to sink in. I’d been sort of bragging to friends that Ralph was actually coming with me this time, but I started hedging, saying that if he resisted I wasn’t going to force him.
The truth is that traveling with Ralph is no more fun for me these days than it is for him. He was never the most adventurous companion, but he was generally game. Now his anxiety and low energy makes every trip a complicated obstacle course of arrangements: limited activities, limited walking, no wandering, no spontaneous choices, a lot of naps. I hear how trivial these complaints are. All that’s required is patience and a willingness to slow down, but that’s the rub. A husband in his sixties with cognitive impairment is in many ways equivalent to a typical eighties something husband; I know I’m not being fair, but while I hang on to late middle age by my fingernails, I resent him dragging me into older age.
Yesterday we looked at the weather report for the weekend: thunderstorms. Now my granddaughter and I are perfectly able to occupy ourselves playing cards, watching movies and eating junk food. Ralph does none of the above. What he does when faced with free time, of which he has much, is smoke cigarettes outside on the porch. But my daughter’s apartment has no porch. He’d be sitting outside in the rain.
“You’re off the hook,” I told Ralph and breathed a guilty sigh of relief, thinking how much more fun I would have.
This morning I was starting to pack my single bag when the phone rang. My granddaughter has been invited by a friend’s family to spend Labor Day weekend at a beach resort. Evidently I’m “off the hook” too.
Alice in Memoryland 
You wrote, “Low energy,” Alice. That’s the MCI symptom that I notice the most.
But low energy and fatigue, that’s me now. I have a long commute and so I’m used to getting up before 5am, and it never was much of a problem – but it is now. I didn’t sleep much later even when I didn’t have to go to the office – but now I sleep as long as I can. Just a couple of years ago, 6 1/2 hours of sleep was plenty; now I wake up tired even after 8 or 9 hours.
My wife has some physical issues that slow her down, so maybe for us this isn’t much of an issue yet. But I have to make an effort to push through the fatigue and keep going, an effort that I never had to make before. Although I guess I’m still in my 60s, perhaps I’ll be in my 80s in just a couple of years.
Or will I? We met last Tuesday with my psychologist to discuss the results from my neuropsych tests I took in July. My “immediate memory” improved significantly while my “delayed memory” remained steady, although at a slightly impaired level. So that’s pretty good. However, my visual-spatial cognitive performance took a nose dive and my psychologist noted “mild aphasia.” That’s not so good. In the end, my diagnosis of MCI/possible Alzheimer’s remains, but my psychologist said it was a closer call this year than last. Could I be one of the lucky ones who return to normal cognitive performance after all?
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Wow, improved “immediate memory” is definitely unusual in MCI. I have my fingers cross that maybe you will return to normal cognitive performance (and maybe your fatigue is just the build up of years of that commute, which I am amazed you can still manage). In our sixties we do slow down some. But your writing shows a clarity, and frankly an energy, that breathes with life….
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Oh, I so relate to this. I love your description of “hanging on to late middle age by my fingernails”. You describe it so well. I hadn’t thought of it that way before, but really, my husband is more like someone in his 80’s. Low energy, lots of naps, limited activities.
The repetitive questions throughout the day, every day, when something is a little different can be hard. Hard to keep your patience. Hard to respond to without showing at least a hint of aggravation of having to answer and explain again and again.
I’m not sure I can travel alone anymore. In fact, I am almost certain I cannot. The anxiety it would create would be very difficult for him. And, with the increased anxiety he would likely forget to eat, drink fluids as he should (he already needs a lot of prompting for this now.)
Thanks for sharing this Alice. It makes me (and others, I’m sure) feel a little less alone in our journey.
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Thanks Carole.
I have travelled alone on short trips with ok from Ralph’s doctor, but I call four or five times a day. He does fine because his routine is not interrupted. In a way he is less dependent these days, at least emotionally, as long as nothing is demanded of him and I make sure his basic needs are taken care of (food and meds prepared ahead,someone to check him, etc). Not sure when it will change…
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