Tag Archives: Alzheimer’s Travel

Alzheimer’s By Phone and Life List

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Me: Hey, just checking in

Ralph: Hey, how is everyone.

Me: Fine. We’re all fine. R is working. J is away, remember. That’s why I’m here.

Ralph: Oh that’s right. I forgot.

Me: So what are you doing?

Ralph: Not much

Me: Did you take your pills?

Ralph: Yep I checked them off the life list. Today is Thursday right.

Me: It’s Friday.

Ralph: Oh Right. Well I’ll take them right now.

Pause while he goes to pillbox.

Ralph: I took them and checked them off.

Me: Great. Did you eat dinner (or lunch or breakfast)?

Ralph: Yep

Me: What did you eat.

Ralph: Whatever was on my Life List. How is everyone?

Me: Fine. BabyRalph is asleep

Ralph: How old is BabyRalph now?

Me: One. Remember we came to the birthday last week.

Ralph: Right, right. I forgot. How is everyone?

 

This is more or less the conversation I have three times a day when I am away from home and I have been away a lot lately, on the road between Ralph and BabyRalph, mixing up husband and grandbaby care. I also have a me-time weekend with college friends and a two-day family reunion coming up in the next six weeks. So that’s a lot of travelling and a lot of leaving Ralph at home.

 

I have mixed feelings of course. Travelling to be a NanaNanny is tiring but wonderful. At the reunion I get to take my son as my plus one since Ralph doesn’t travel. My friends and I have already planned every minute of our us-time weekend with restaurants and shopping and even some culture thrown in. l want to go on these trips and I feel guilty about going—but mostly guilty for not feeling more guilty.

 

Because the truth is that Ralph seems to thrive when I’m gone. He loves what he calls his Life List of activities and events to check off once accomplished. He takes his pills, he eats his meals that I have left, he sees the people who’ve arranged to visit. And he can see he has done so. The Life List works much better when I am not home. Ralph loves to check off his accomplishments. He has a sense of being in control of his life. But when I’m home that same checking off has the oppressive and demeaning effect of too much overseeing. He prefers the more passive activity of glancing twenty times a day at the calendar when I am home.

 

Of course, when I say thriving, “seems” is the operative word. Because when I’m gone, my impression of Ralph is based on phone calls. In the numerous phone calls each day he “seems” really pretty happy. And pretty cognitively together. He makes funny jokes and is more engaged in conversation than he ever is when we are sitting in the same room. If I ask a question he has a ready answer. He asks me questions about what I am doing that he never asks when we are together. We actually have fun, especially when I put him on speakerphone with BabyRalph (no face time with Ralph’s flip phone) and he can hear baby babbling and I explain what BabyRalph is doing. He is engaged.

 

Or maybe I am kidding myself to feel better about travelling. After all, I know that when he talks to other people, they find him equally engaging although as soon as he hangs up, he has no memory of what they talked about or often even than they talked. Yet, in the moment he seems engaged. Or maybe he is engaged.

 

In any case, I do know Ralph doesn’t mind getting to sit on the porch with the dogs listening to the news and smoking—or sitting with them in the car as he’s been doing during cold weather—without my nagging him to come inside. I suspect he prefers the simple premade dinners to my salad and chicken dinners and that he sneaks in extra nutty buddies for dessert.

 

And when I get home tomorrow he’ll say he’s glad to have me back before returning to his nap or the porch as if I’d never been away.

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Alzheimer’s Drip by Drip by Drip

 

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Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.

Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:

The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.

It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.

At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….

P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region&region=bottom-well&WT.nav=bottom-well

From Memoryland to Babyland Part 2

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It has been over six weeks since I last posted, a long stretch given I usually post at least once a week. I have spent most of that time, ever since BabyRalph’s birth, in New Orleans helping my daughter and her growing family. Basically, I have been embroiled in Grandbaby Land, pretty much to the exclusion of everything else in my life.

Including Ralph.

I write those two words nervously aware that you may be judging me as a bad wife for leaving Ralph in the breach. Or maybe I am projecting my own nervous guilt? A little of both I suppose.

But the funny thing is that Ralph is thriving in my absence.

I didn’t make the decision to be in New Orleans  lightly but I can’t say I hesitated. There were some rocky health moments in the first couple of weeks of BabyRalph’s life, and while he is fine now, he has demanded a little extra care. My daughter asked me to be there as much as possible to help. Ralph and I discussed it, and he was surprisingly comfortable, even encouraging, at least in the abstract. So after our initial visit, I drove him home to the farm and spent a few days organizing his life to work without me for the next ten days before driving out the driveway without him.

I called in favors from friends to set up a schedule of visits so that someone would be dropping by literally every day, whether to take him out to dinner or to chat for a few minutes and make sure he was okay. I set up his pillboxes. I bought and cooked frozen pizza, a roast chicken, and other favorite prepared foods.

Most important I made a new form of checklist for him: a linear calendar with times and activities spelled out in detail and a space for him to check X once he completed a given activity. Every day he was to X when he took his pills, when he fed the dogs, when he ate lunch, when he ate dinner (with menu suggestions spelled out), when Francis or Debbie or Kay etc. visited.

Ralph has always loved lists and calendars. When he ran his business, he swore by his calendar keeping and had all his employees keep detailed calendars as well. Now that his sense of time is shot—he can read a clock but has no sense of days, dates or the passage of time hourly or daily—we keep both a calendar book and an eraser board calendar for reference. (He does not use a computer or smart phone.) But this new checklist, which I taped to the kitchen counter, has been a revelation. He loves it and takes pride in checking off. The irony is that the only time he has missed taking his pills in the last two months was a Saturday when I was at home with him so didn’t have the check off list in action.

As for my presence, basically I have been gone for a week to ten days at a time, then home for two to four days, then gone again. While I am in New Orleans, I call Ralph in the morning to make sure he gets up, then every three hours or so throughout the day. And of course he calls me occasionally, although not as often as you’d think, usually when something has sparked him into a loop and he wants to discuss it over and over on the phone, just as he would if we were together at home.

But really he doesn’t seem very needy because he is suddenly Mr. Social, enjoying the company of my woman friends, “the Girls” or “my girlfriends” as he calls them, who sit with him during his late afternoons on the porch and sometimes drag him out to dinner. The woman who has cleaned my house for twenty years comes by twice a week (refusing to take money for the extra visits so we have arranged a barter) to make sure he has everything he needs. Everyone who comes, knows to check the pill box just in case and to make sure there are never more than a few beers in the fridge as well as where to hide the extras.

More important, so far everyone has let me know that Ralph seems to be not only holding his own, but in great spirits. Of course I worry, am I being selfish.

As a wife I should want to be with Ralph more than with anyone else. But the truth, and it is not easy to face or state, is that I can’t say I have missed Ralph as much as I think I should (of those shoulds!). This time with BabyRalph and family—filled with three-hours-of-sleep nights, endless laundry and washing of baby bottles and pumping implements, constant carpooling of a social butterfly thirteen-year-old adapting to having a tiny half-brother, and all the extenuating tensions of a life-changing event—has been a kind of vacation from my usual responsibility. I know Ralph may be less able to handle my absence going forward so I am taking advantage of the opportunity.

But I find myself wondering more and more how I am going to give up spending so much time with BabyRalph and how I can finagle Ralph into spending more time down here too. This is the crux of so much. As a married couple, the decisions of where to live and how to spend out time should be joint decisions. But I know we cannot live indefinitely the way we do now, on a farm that leaves us somewhat isolated and that Ralph can no longer keep up on his own. BabyRalph’s birth has thrown a spotlight on the need to make a decision sooner than later, but also on how complicated and difficult that decision and the ensuing changes will be…

From Memoryland to Grandbabyland: Part One

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If I have been absent lately, I have a good excuse: My daughter gave birth to her first child, a baby boy she named after Ralph. BabyRalph is as adorable as every newborn—in other words his parents and grandparents find him an absolutely perfect specimen of infancy and expect everyone we send pictures to agree with us, whatever they really think.

The plan has always been that

1), Ralph and I would drive down to New Orleans once my daughter went into labor and stay for a few days after the birth before I drove Ralph home

2), I would then return to help out on and off as long as needed, having arranged plenty of back up help for him.

Needless to say I was nervous about both parts of the plan.

For one thing, Ralph was less than enthusiastic about going to New Orleans at all. He said babies scared him, and I believed him. He was always more a dog person that a small child person. While he was present as the births of our two kids, he is a proud member of the late sixties generation of macho activist guys that spouted feminism but didn’t actually live it. I’m sure he must have changed some diapers; I just don’t remember when.

As my daughter’s due date approached (and then passed), we all became more and more anxious. Ralph too. His concerns shifted from himself to the upcoming birth and all that could go wrong. He stopped worrying about his own travel. He started calling to check in on my daughter and son-in-law (Flyfisherman) nightly. When are we going down again? Do you know when she’s go into labor? became his new mantra, which he repeated throughout the day several times an hour. When the call finally came that labor had begun, he willingly got in the car, and he barely complained on the six-hour drive.

Once in New Orleans, things got a little trickier. Ralph does not like changing his routine and likes excitement even less. Fortunately the small AirBnB we rented had a little patio where he could smoke. Since labor was going slow and we were asked to stay away until BabyRalph’s actual arrival, Ralph stayed on that patio a lot while I picked up the other grandmother at the airport and BabyRalph’s twelve-year-old half-sister K from school. Fortunately Ralph also napped since we were not summoned to the hospital to meet BabyRalph until late that night.

On that first visit and again the next day, while Baby Ralph’s two grandmothers and an ecstatic K vied for turns to hold him in the little rocking chair the hospital provided, Ralph held back. He would not hold the baby and would only look at him from the small sofa across the room, not up close. The next day was the same until I sat on the sofa with the baby so someone could take a picture of the three of us together. Ralph looked at the baby. Ralph squinched closer. Ralph decided maybe, just maybe he’d try holding the baby.

Ralph took his namesake in his arms. Ralph began talking to BabyRalph. Ralph began singing Dylan songs to BabyRalph.  My daughter,  DaddysGirl, may have teared up a little. I might have too. We all snapped pictures of BabyRalph.Ralph held BabyRalph and held him some more, until it was time for a diaper change. It was a magical moment.

But it was only a moment. Ralph did not show interest in holding the baby again over the next two days before I drove him back to the farm where he greeted the dogs with great joy and relief.

Part One of the Plan was a success.

Part Two…. I’ll let you know soon enough.