Tag Archives: travel and Alzheimer’s

A New Year’s Resolution: Self-Caregiving

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2017

We all hear from and tell others how important it is to take of one self as a caregiver. Lately a Caregiver’s Bill Have Rights Has Been Circulating. The suggestions make a lot of sense, in particular to take care of myself; to recognize the limits of my endurance and strength; to maintain facets of my life that do not include Ralph; to allow myself to get angry or be depressed occasionally (that’s an easy one); to stop being manipulated into feeling guilty (that’s a hard one, no manipulation required); to accept affection, and appreciation; to protect my individuality.

But in talking to others in the trenches, I find I am not alone in feeling that, even with a Bill of Rights posted one my wall, it is not always clear what taking care of oneself means.

One example: Back when Ralph and I were first dealing with his diagnosis, I loved reading about Alzheimer’s Wife’s quick trip to Paris at https://alzheimerswife.wordpress.com/?s=paris, especially since I took a similar two day trip myself. Now my daughter is about to have her first baby and I will be traveling alone quite a bit to help out (I am dragging Ralph with me when the baby arrives but he’s made clear that he does not want to leave home more than absolutely necessary). I want to go and look forward to Nana-ing, but I find myself as worried about the arrangements for him as excited about the actual travel.

The ying and yang here is the question–Do I let myself relax into the slow down, or do I try to squeeze in some activity that ends up putting more pressure on me. My resolution for the new year is to work on finding the answer, for my sake, but also for Ralph’s because he is definitely happier when I am.

But you know how resolutions usually turn out.img_0154

(PS—Happy New Year…I’ll let you know if disinterest in grandfatherhood lasts when there is a real baby for Ralph to hold in his arms)

Travel With Ralph (or Not)

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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.

My Vacation from Caregiving–What Every Alzheimer’s Spouse Probably Needs

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I took a vacation from Ralph last week, a road trip through Quebec with my oldest friend. (The photo is Quebec City at night.)Quebec City At Night

Two years ago I cancelled a trip with another friend to Europe just days before I was scheduled to leave because Ralph had an anxiety attack. He had just been diagnosed with MCI and, I realize now, feeling scared about his situation. This time, our niece, who is a nurse, came to stay with her three daughters aged 11 to 21, another nurse friend and my 11-year-old granddaughter. In other words, I could be guilt free about leaving him behind since Ralph was in his idea of heaven: getting lots of attention from  a harem of six charming females without having to leave home. (He did go out for one meal but mostly they brought him back take-out if he refused to accompany them places.)

Of course I did feel guilty anyway. As I walked down beautiful cobbled streets, bought the perfect silver earrings, spent leisurely morning hours reading over croissants and coffee, ate one wonderful meal after another, I could not help asking myself, “Why do I need a vacation anyway? Life with Ralph at this point is just not that hard, especially compared to what other people handle every day.”

Then halfway through the trip my niece texted, “I see why you need a vacation.” Ralph had been asking the same questions repeatedly the way he does when he gets on a jag, and he had been over-feeding the puppy with senior chow immediately after her puppy chow breakfast with predictably unpleasant doggy results. That my niece, a trained nurse, was finding Ralph exhausting was oddly reassuring and empowering. I realized that escaping the daily patience/impatience tension and being able to care for just myself was exactly the break I needed.

The relief I felt was bittersweet. But then I also had to admit another bittersweet reality: that I never much enjoyed travelling with Ralph even before his diagnosis. Our trips together were rarely successful because they brought out certain unavoidable differences in our approach to living. I like(d) to wander and explore. He liked a destination and goal. I enjoy(ed) the adventure of travel, the getting slightly lost, the disasters as well as serendipitous discoveries . He has always preferred to be in control. I even like(d) airports because they’re so divorced from daily life. Airports always made Ralph anxious even before Mild Cognitive Impairment made them overwhelmingly confusing. I used to force him to take trips with me to interesting places. Once we were there, I could seldom relax because I was working too hard to make the experience fun for him.

So much of what I write in my posts implies that I have lost something because of Ralph’s condition, implies a certain marital perfection that just wasn’t the case. I don’t want to idealize our relationship. Coming home I realize I need to face both the reality of the past and of the future. I want to recognize our past for what it was, not with phony nostalgia. Just as I need to recognize the reality of the changes, sometimes small and easy to miss, currently taking place in Ralph  so I can prepare better for the future that is inevitably coming by learning how to work the HVAC, how to spend evenings in solitude, how to travel and enjoy myself in general without guilt. When I come to think of it, I should know how to do all these things anyway.