Category Archives: Caregiver/Spouse Issues

The Zest Deficit– Cognitive Impairment is More Than a Loss of Memory

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I spent last weekend in NYC, visiting my son and old friends, going to restaurants and museums, carrying on lively conversations about politics, art and philosophy. I came home five pounds heavier but energized, reminded that there was a world out there and I was part of it.

I almost added to the above paragraph, “Also guilty” because that has usually been the companion feeling when I enjoy myself without Ralph. But I am not sure I did/do feel guilty. Pre-Alzheimer’s spectrum Ralph would have wanted to share that energy, would have been jealous that I was getting to have experiences without him, would have missed me, would have made me feel guilty. Ralph as the person he is now does not feel as if he’s missing anything when I go out into the world without him. He is thoroughly content to sit in his “office” or in his porch rocker or at the kitchen table as long as his dogs, his cigarettes and either his beer or coffee are nearby. When I walk in the door, he is glad to see me but more interested in returning to his chair or to bed.

Still having been gone a few days having fun, I wanted to offer a nice meal to Ralph last night. I asked if he’d like anything special for dinner. I am a pretty good cook, and Ralph used to have very definite ideas of what he liked to eat and very large appetite. Eating was always one of the bedrocks of our relationship. We shared an enthusiasm for trying out the newest, most cutting edge restaurants in any city we visited. For choosing the most exotic and/or spiciest choices on any menu. And for experimenting at home with made up recipes.

“Whatever is easiest,” Ralph said last night, as he has said every time I’ve asked lately.

No suggestion I made could draw any enthusiasm. So I threw some leftovers together and was done with it.

We woke this morning to a beautiful fall day. Dry but not too dry, a few clouds in the blue sky, a slight wind ruffling branches still full of green leaves, the temperature in the temperate 70s. The perfect day for a walk.

I asked Ralph if he’d like to take one with me.

“Not really.” He wasn’t being mean. He just wasn’t interested.

Ralph used to walk every day. I was the lazy one he had to drag along.

Along with a loss in memory has come what I can only call a loss for the zest Ralph used to take in life’s small pleasures. Yes, witnessing this change makes me sad, but I have to acknowledge that Ralph is not sad. He is content. I am the one who feels discontent. When I throw a slapdash dinner together or skip a walk for lack of a human companion—and I do both with more regularity than I like to admit—I feel that I am letting myself be diminished, or more honestly, am diminishing myself. It scares me how easy I find it to sink into the featherbed of sloth. Am I using Ralph as an excuse or is Ralph’s condition wearing me down? I’m not sure, but the fact is that my new normal is the color gray. (In fact, I actually found myself thinking last night that I wanted to reupholster the living room chair in gray fabric.)

The New York weekend reminded me that highs are still out there to experience. Of course, so are lows. For Ralph, he’s found peace in passivity as his world shrinks. I have to decide whether I let my world shrink too.

Meanwhile, I think I’ll take that walk with Lola the dog now.

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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…

Ralph, Captain Emiritus–An Alzheimer’s Transition Moment

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For as long as I’ve known him, Ralph’s love of  boats and boating pretty much summed up his identity:

A lover of the outdoors.    A sportsman who preferred active participation in physical activity to watching from his couch.     A competitor who found competing against himself (or a fish) as rewarding as competing against others.    A problem-solver whose knack for fixing  machinery matched his love of tinker.    A perfectionist who kept his gear shipshape.    A leader who reveled in being captain of his crew.

Early in our marriage, as soon as he had a little extra spending money, Ralph bought his first boat, a small daysailer. I was never a boater and I remember at least one miserable ride in the early days of my first pregnancy. Then he traded up for a racing sailboat he named HARD RAIN after the Dylan song—apropos since every time I was dragged onboard, not often,  a storm showed up too.  For years Ralph sailed almost every weekend, frequently both Saturday and Sunday, with my close friends as his crew, while I stayed home with our toddler(s); if you think you catch a whiff of  lingering resentment on my part, you might be right. But boy, Ralph enjoyed himself. He always came home whistling with a story to a tell

Nevertheless, around the time we moved to the farm, he sold the sailboat–a matter of distance and weekend farm chores. But in the early nineties we started spending time on the Forgotten Coast, that still unspoiled stretch of Northwest Florida . Ralph being Ralph, we soon owned a lot with a house trailer near a boat ramp. Ralph bought a used skiff with a motor that seemed to die a lot, at least when I was around. I hated that boat. Then he found his beloved Paper Moon, a boat he could maneuver in both shallow streams and the sometimes rough waves of Apalachicola Bay. We moved to a piece of land with a dock on the bay and a garage apartment, but no actual house. By then Ralph and some pals had formed a Fishing Club that met for frequent “tournaments” although active participation dwindled over time to mainly Ralph and his even more obsessive first mate The–Other-Ralph.

Then our daughter introduced us to the new man in her life. Ralph, ever distrustful of her various would-be suitors, accepted this one immediately for a simple reason: he was a serious fisherman, a fly fisherman no less. Fly Fisherman also hit it off with The-Other-Ralph.  The three started fishing together and Fly Fisherman willingly took on more and more responsibility for the less fun tasks like prepping the boat, organizing the lunch, and cleaning afterwards.

Over the last few years Ralph, who used to stay out on the water for ten hours straight whatever the weather, began coming home for lunch after a couple of hours, then finding reasons not to go back out in the afternoon with the others. By last spring when The-Other-Ralph’s family and ours gathered for a week of beach and boat, my Ralph found reasons not to fish at all—the heat was bothering him, he had a stomachache. Fly Fisherman ended up taking The-Other-Ralph and his family members out on the boat without Ralph. Afterwards Fly Fisherman cleaned and made repairs as well.

Since then Ralph has not stepped foot on the boat. When I suggested trips to Apalachicola he was less than enthusiastic. We’d get down there and he might cast his line from the dock but he would avoid even visiting the garage where the boat is stored. On a visit last fall, my daughter was dismayed to find the garage in disrepair with mouse droppings and nibbles on the seats.

Ralph’s boating days were clearly over. Still, if he could not quite admit that the boat had become a responsibility he didn’t need and could not longer handle, I wasn’t going to force the issue. And the idea of selling such an essential part of Ralph’s identity was an anathema. (Also daunting since I’d be the one in charge.) So what to do?

With Ralph, The-Other-Ralph and Fly Fisherman about to have milestone birthdays, although thirty years apart, my daughter had a suggestion.

Ralph looked at me askance when I mentioned the possible birthday present. “What if I want to use it?”

“You’ll get Fly Fisherman to take you out.”

The more we talked it over—and believe me we talked it over many times a day, often repeating the same exact sentences—the more Ralph liked the idea. No, loved the idea. Once our two sons, who have no interest in boats, and The-Other-Ralph gave their enthusiastic blessing, Ralph became gleefully obsessed with giving the boat to Fly Fisherman.

Here was his out–a  way to acknowledge his loss of interest, not to mention stamina and capability,  without losing dignity. He embraced as his own choice the possibility of keeping Paper Moon in the family while handing over the actual responsibility. He told everyone that he’d decided to give the boat to Fly Fisherman. The problem became making sure Ralph didn’t spill the beans about what we wanted to be a birthday surprise, but somehow the word did not get back to Fly Fisherman.

Last week, Ralph sent a birthday card to Fly Fisherman with a photograph of  Paper Moon on the cover and a short, funny note inside  i explaining n his own words that he was turning over the enclosed boat title.

He signed it, then had a thought and added a PS.

I still expect to be addressed as Captain when aboard.”

I breathed a sigh of relief both for the smooth transition and the proof that Ralph was still Ralph.

A New Year’s Resolution: Self-Caregiving

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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)

Ms. Grinch, The Caregiver (i.e. Me)

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This Christmas season I am definitely feeling like Ms. Grinch. Maybe it’s the increased sugar intake, maybe it’s the extra running around and social organizing, maybe it’s the gray weather, or maybe it’s not Christmas at all, just the wearing down of my patience over the last twelve months, but Ralph has been “getting on my last nerve.” And that nerve is shredding fast.

As I have said here so many times, this caregiving business has its ups and downs. Well I have definitely been in a definite crevice lately and having more trouble than usual crawling out. Or admitting I was stuck at all until this morning when I found myself texting my sister that I was feeling overwhelmed, the kind of admission I generally avoid. She responded sympathetically asking what was wrong; I wrote back “Nothing wrong exactly. Just day-to-day stuff. Everything slower and more complicated. Trying to adjust to reality of how Ralph’s limitations impact.”

As soon as I hit send I realized what I had typed was an acknowledgement of certain obvious but previously unstated realities:

1) I trip myself up with unreasonable expectations. Intellectually I know that Ralph is limited, but in the face of reality, I keep expecting him to step up to the plate. While occasionally, he does step up, like getting Zeus to the vet last week, usually he can’t. I know that’s not his fault, yet I still get annoyed.

2) Annoyance and its sister resentment are  only part of what I am feeling. Before that text Ralph and I had spent hours writing an email responding to someone asking Ralph for real estate advice. Actually I could have/would have given the same advice, but she trusts Ralph’s advice more because he’s always been the expert. And his instincts and perspective remain sharp. But he cannot hold onto a thought long enough to give advice. So I constructed the email letter by asking him the same questions over and over, fine tuning as I posed the same question in different ways. We actually worked well together because we both acknowledged without rancor Ralph’s memory issue. That our final product was a clear, concise and useful analysis should have left us both with feeling a great sense of accomplishment, satisfaction and even pleasure. Ralph was pleased, BUT I WAS EXHAUSTED. And recognizing that the effort exhausted him at least as much didn’t lesson mine—he napped much of the afternoon—as I rushed around carrying out the various commitments and responsibilities everyone juggles in a day.

Obviously lots of people have more responsibilities, especially professionally, than I do at the moment. But I am finding that the effort that goes into making up for his limitations so he can live as full a life as possible…well it’s frankly a drag. Literally, because

3) Ralph’s limitations have been dragging me down and wearing me out. I wake up most morning tired. Worse, I let myself fall into Ralph’s low octane rhythm. My energy has dropped with his but unlike him I have stuff to do, the vestiges of a business to run, his life to run, my life to run, along with various other obligations in our family and community.

4) And then there are my personal creative ambitions. I have to ask myself whether I can keep them alive much longer under the circumstances. And my honest answer is, I’m not sure.

As I wrote that sentence I took a huge breath because there, I’d faced the real crux. Can I put in the increasing time needed to be Ralph’s caregiver—his chauffeur and calendar keeper, his rememberer and mental translator—and expect to have the kind of energy I need to focus and create another world in fiction.

I’ve always said yes, of course. But now I’m wondering.

Having admitted my doubts, I hope I am back in the swing of positive energy very soon. I think I will be. We all feel overwhelmed at times, caregivers and caregivees. We all want to escape. We all have to find the way forward that works for us. And the path is not always the one we expected.

Just writing that last sentence, I feel better already.

Our OLD YELLER Moment

 

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Our dog Zeus had a bit of excitement last week. I was driving to the grocery store when Ralph called and announced that Zeus had been in combat with a wild boar, or at least a feral pig, or maybe a domestic hog that got loose. Whatever it was—Ralph said it had black hair and weighed a lot more than Zeus—must have drawn the dogs’ attention while they were in the yard outside Ralph’s workroom. Ralph said he heard a ruckus and found Ralph in a dried gulley with his teeth in the pig/boar’s neck and the pig/boar trying to get at Zeus. Somehow Ralph managed to separate them and the pig/boar ran off. (If you are thinking, ohmyGod, Ralph could have been badly hurt himself, I know I know but can’t dwell on it or I’ll go nuts.)

I could tell Ralph was upset and excited at the same time, basically on the adrenaline high anyone would experience under the circumstances, and he seemed surprisingly in control of the situation. He said he’d cleaned up Zeus who didn’t seem to have been hurt. By the time I got home with the groceries man and dog were already asleep and I assumed fine.

However the next morning, Zeus was definitely limping when I let him out for a pee. I had an appointment I couldn’t cancel and left soon after, having warned Ralph to check Zeus more thoroughly. Ralph called me half an hour later to say he’d found a gash near Zeus’s belly that he hadn’t noticed. By then I was driving through pouring rain, and my phone was barely working, so Ralph was pretty much on his own.

Although I directed him where to find the vet’s phone number on the fridge, Ralph called on his own, made an appointment and took the dog in by himself: In the poring rain. To the vet’s office that’s not on his usual driving radar.

When he called back to say that Zeus was scheduled for surgery and would be staying the night, he sounded definitely in control of the situation.

I was impressed. Guilty that I had not paid more attention to the situation. But mostly impressed, thinking that maybe I shouldn’t underestimate Ralph, that I need to recognize he is still up to handling a crisis.

Of course in the morning I did have to remind him where Zeus was and why. And luckily I was in the room when the vet called because afterwards Ralph wasn’t sure what the vet had just told him. I called back to give the vet office my number for future reference, they explained they wanted to keep Zeus an extra day. (Zeus is now something of a vet celebrity by the way, our own local Old Yeller, especially after they pulled coarse black hairs out of his mouth where Zeus lost a fang from biting down so hard.) Still, I was feeling really good about Ralph’s competence when we picked up Zeus and brought him home.

But here’s where things get sticky. The meds, morning and evening pills, I can deal with myself, but keeping Zeus inside, per the vet’s instructions, has depended on Ralph’s help. And this he seems incapable of remembering, any more than he can remember that the wound is on Ralph’s thigh not his stomach. Each time I catch Ralph and the dog outside, I go through the routine of reminding and explaining Zeus’s injury, his treatment and that he is supposed to be inside until the stitches heal. This recovery process is driving me crazy of course.

Gotta go make sure Zeus is in the house……

MOWING A PATH INTO NEW TERRITORY

 

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Last week, at my request, my younger brother flew down from Pennsylvania and spent two full days on our John Deere tractor bush-hogging our fields.

That I had to ask my brother, or anyone, to come represents a turning point. Two years ago, already diagnosed, Ralph spent every day for months mowing the same fields to have them pristine for our daughter’s wedding. A year ago, he was still mowing regularly. But he has not driven the tractor since last spring. And over the summer the wheat/weed mixture grew higher than an elephant’s eye.

I asked during our last Emory Brain Center check up if Ralph should quit mowing, and was told mowing was fine. Although he has stopped driving most places out of fear of getting lost, his motor skills are fully operational.

Ralph’s problem was not ability, but motivation. About every two days we discussed the fields. I’d ask him if he was sure he was up to mowing. He’d say yes…yes but he was too tired or had a stomachache or it was too hot out or too chilly so he was planning on starting tomorrow. Then tomorrow would come and we’d have a similar discussion.

This is the pattern that the spouse part of me has had the most difficulty accepting. I was supposed to be the procrastinator in our relationship, at least in non-emotional areas. I was the one who put off unpleasant chores; Ralph was the one whose mantra was BE A CLOSER, who taught his kids by example to follow through and get the job done because he always did. Not anymore; each time a situation comes up, from helping to clear the dinner dishes to mowing the fields, I want to believe him when he agrees so pleasantly to do whatever I’ve asked. And then of course he never does and I become increasingly frustrated, mostly at myself for falling into the habit of depending on him.

As usual, over the last few weeks the reality slowly seeped into my brain that for whatever reason—because he simply forgets or lacks the energy or has unspoken anxiety about his ability to remember how—Ralph was never going to mow those fields.

And the only person I know with tractor skills is my youngest brother who has always shared with Ralph a love of machines—they spent a joyous summer over thirty years ago taking apart three elderly Triumphs to build two refurbished ones. But over the last thirty years the relationship between the two, once extremely close, became increasing problematic. In fact several years back tensions intensified to the point that the two of them got into a physical altercation during a family wedding.

Of course Ralph doesn’t remember the altercation and has only a vague recollection of there ever being any tension. And my brother has been more than happy to patch things up. He has visited several times recently while passing through. I called and asked if I could pay his way down to help. He agreed immediately.

I told Ralph my brother was stopping by on his way to a business meeting in Florida and suggested maybe we could Tom Sawyer him into helping out around the farm. Ralph thought that might be a good idea and was remarkably unsuspicious on the first morning when my brother voiced an interest in mowing. For the next day and a half my brother mowed and Ralph sat on the porch.

For the first few hours, my brother thought Ralph seemed pretty much as he remembered but that has time went on there were increasing signs of Ralph’s memory lapses and his less definable personality change from Get Things Done Man to Ho Hum Whatever Guy—when a tractor hose broke, Ralph’s response was ‘We’ll deal with it tomorrow’ until my brother reminded him that he was leaving tomorrow and needed to mow today. But the two of them hung out together and generally had a lovely time.

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Boy those fields look great. Maybe we could get him to come back and mow a couple of times a year.” That’s Ralph talking not me. Over the last couple of days, he has made this suggestion a lot.

 

Does Ralph realize the mowing visit was a set up? I don’t know and am not sure I want to ask. We may have found our way into new don’t-ask-don’t-tell territory where we don’t acknowledge but accommodate ourselves to Ralph’s limitations while maintaining his dignity. Or perhaps I am kidding myself about his awareness.