Moment of Reflection: Where We are On Our Alzheimer’s Journey

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Last week I had the opportunity to speak on a panel about caregiving in to a group of nurses and nursing students at Emory University in a conversation titled Lived Experiences in Coping. The other two members of the panel, the wife of a man with Parkinson’s and a woman who has MS, were actually nurses themselves so I was a bit intimidated at first, but I think I held my own (although I fear I went beyond my 15 minute time limit). And it was a fascinating morning as we shared perspectives and answered questions from the professionals who asked over and over what they could do to improve the care experience.

As valuable as the meeting was, what was most useful to me was the preparation. In the invitation to speak I was asked to discuss how we arrive at Ralph’s diagnosis, and how the news and illness trajectory have affected my and Ralph’s lives.

Not surprising questions or ones I haven’t thought about in the past, but ones I have avoided thinking about for a while. I used to take stock regularly to keep perspective, but lately it’s been easier (i.e. less scary or anxiety producing) just to rock along day by day without considering the long picture and the implication Being asked to talk at a symposium forced me into that area of necessary discomfort.

So what I jotted down:

Diagnosis came in 2013. Before that I didn’t want to think his memory problem was serious in part because his failing memory coincided with a personality change I liked. In fact I realize that for those few pre-diagnosis years we were in a SECOND HONEYMOON—he was less angry than he had been as a younger man and a sweetness emerged that he had not shown before. If he was secretly stressed, I didn’t choose to notice.

Then for maybe six months before the diagnosis, Ralph went from forgetful to what I found at the time annoyingly inattentive. I thought he wasn’t paying attention when I had to repeat things over and over. And he was often argumentative at night, so we went to bed angry at each other, but while I’d wake up still angry, he’d wake up denying there’d been any friction the night before. But still we were closer than we’d been for years.

Then his memory tripped him up more obviously—I have written about the fishing trip that made him realize something might really be wrong because he couldn’t keep up with the other guys—and he saw our family doctor who sent us for tests. Ralph and I were convinced he had Lyme’s disease.

Between taking the tests and learning the results we went from honeymoon to LIMBO. In real time I am only talking about a month or two from test to first diagnosis and another three months until we saw Dr. Lah at Emory’s Brain Clinic. But the period felt much longer—one of those crucial moments in time that stretches as if time has slowed down to allow for the heavy significance. We didn’t know much about Alzheimer’s. We were both anxious. Neither of us knew exactly what to expect but we were talking about it A LOT. I remember a car trip, six hours talking away, feeling oddly close as we faced an uncertain future together, both of nervous but open and oddly upbeat. The ride was actually kind of fun.

Then we got the diagnosis and went from Limbo to PURGATORY. One day he was one person, the next he was someone else. Not that his condition changed, but one it was NAMED, it was much more scary. Suddenly he was terribly, terribly anxious and suddenly I felt the need to limit plans, to take over his business (and close it), to act as a buffer between Ralph and all the people who didn’t know he had an actual condition that was causing him to act certain ways. Purgatory lasted for a long while. He seemed to slip dramatically and then, once he began his drug regimen, he regained some ground, only to slip a little more over time. His memory did not get worse—it was already terrible in the first tests—but slowly other aspects of the Alzheimer’s spectrum showed up, like passivity, lack of time awareness, loss of sense of direction, withdrawal from the world, and a general malaise along with the frankly beneficial loss of memory of all arguments and disagreements as he embraces those with whom he had fallings out. My symptoms as caregiver also showed up—greater impatience and loneliness balanced by a kind of desperate energy and new to me gregariousness as well as moments of patience I didn’t think I could manage.

For a while now, we have been on a PLATEAU. Ralph has been holding steady more or less. Some days he’s more with it than others. But I can’t really see much difference from week to week.

The big difference is in expectations. It’s not that I have bad ones. Or not exactly. I have none at all. The rule of thumb is that Alzheimer’s progresses, but the rate is so varied that I have no clue how it will progress in our case, what route it will take or how long. But I do know that when we move from this plateau, the next stage will not be good.

Alzheimer’s and Nurturing Men

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I was picking out apples at the grocery story yesterday when I noticed a woman having a kerfuffle over by the oranges. After she knocked over a small display, her husband rushed to her side and gently steered her away. As I picked up the display, I couldn’t help watching how he spoke quietly to allay her anxiety and confusion. Walking walked past him on the way to the spinach, I whispered, “You are a lovely man.” (To be clear I was not being flirtatious and he was definitely not lovely in any literal sense.)

A few moments later we found ourselves standing together by the avocados. I explained to him that I spoke to him because I wanted to make sure he got credit for the nurturing way he dealt with his wife. I said I understood his situation as a spouse caregiver myself. The look of calm that washed across his face was different that gratitude or relief, was closer to what I imagine war veterans must feel when they connect. We talked for maybe a minute or two and then I moved on before he could see that I had tears in my eyes.

One of those brief moments that reverberate and reverberate.

But it got me thinking, not for the first time, about how much harder it may be for husbands than wives, at least those of my boomer generation. We were a generation who adopted feminism but were not born to it. There was a lot of intellectualizing about women and men’s roles, but there remained an emotional pull to the way we were raised. The men, however “progressive” or “liberal” or even “radical,” paid lip service but under the surface, our roles only shifted so far.

So men now in their fifties, sixties and seventies with wives who are struggling with impairments are having to learn to nurture the way women in similar situations have known how all along. And men like my grocery store friend are stepping up. I am amazed at their openness about how hard it is and their willingness to go all out. Frankly they often seem more open and more willing than I am.

Like many a good feminist of my generation I have never been above a little vicious, resentful man-bashing, let alone husband-bashing. But this is my little shout out to the guys. We are all in this together.

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.

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.

Alzheimer’s As Public Health Issue

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PBS is airing a program entitled EVERY MINUTE COUNTS about the importance (is that the right word…danger? risk? cost?) of Alzheimer’s as a public health issue. It will be telecast this coming Wednesday, January 25, 2017, at 10 pm.

I have not seen the show, only the promotional material, but being someone who tends to view Alzheimer’s and degenerative cognitive disease through the narrow lens of my personal experience as the spouse of someone on the Alzheimer’s spectrum, I look forward having the chance (is that the right phrasing… will force myselffeel a responsibility?)  to examine the larger social and economic effects.

For those of you with access to American television:

EVERY MINUTE COUNTS   10 pm  Wednesday, January 25, 2017   your local PBS station.

Alzheimer’s Benefit–Exposing A Goodness Quotient

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I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves