Another’s Sorrow

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The other day a friend with whom I’d fallen out of touch let me know that her husband had died suddenly and unexpectedly in the last year. Although I’d met him only a few times, and his was certainly not the first death I’ve heard about lately,  the news struck an unexpectedly sharp chord.

The thought of one’s one mortality is inevitable when someone else dies. Death has becomes a tickle at the back of my thoughts over the last few years , and although I have more or less adjusted to the fact that Ralph has cognitive impairment, I don’t like to be reminded that I am aging too, that my capacities are altering. But I also found myself disturbed for reasons less socially acceptable, less acceptable in every way.

Even as I mourned his death and felt deep sympathy for my friend’s sorrow, I found myself comparing marriages. My friend and her husband had shared a long marriage, one of those rare solid marriages that withstand challenges, obstacles and the inevitable periods of disconnect that happen to us all, only to grow stronger with the passing years. While there had been physical impairments, they had shared travel and adventure right up until the end. Ralph and I share so little. The stab of petty envy I felt was ridiculous—she’d lost her husband for heaven’s sake—but I felt it.

And what’s worse. I also found myself envying the purity of her grief, longing to possess that capacity for heart-wrenching love for a spouse. My love has become so mottled.

These are embarrassingly ugly reactions to another’s loss I know. But I record and sort them out so I can put them aside. Grief is complex. I am only beginning to navigate its complicated waters.

 

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Caregiver Brain Drain

 

 

cloudy.jpgLast week I wrote about Ralph’s concern over his IQ dropping.

This week, I’m worrying about my own brain. I walked this morning with a friend who has done a lot of caregiving herself in the last two years, though not for Alzheimer’s or dementia. As we chatted about responsibilities, etc., she admitted with a laugh that she was feeling less smart these days. I almost hugged her in relief. “Me too, me too, me too.”

She blames being exhausted.

And that is part of it.

But, in my case at least, there’s more than physical tiredness at work. (Of course, after typing those words, I felt a huge urge to close my eyes for a just an itty-bitty nap.) It’s a kind of emotional depletion.

Since returning from my semi-hiatus in GrandBabyLand, I have had some trouble re-adjusting to the reality of full-time life in Memoryland. Ralph’s memory and what he calls fogginess may or may not have worsened, but I am finding it harder to navigate.

I know perfectly well and remind myself regularly that our situation could be a lot worse. He is physically healthy and still more than able to care for himself. His memory is shot but he still knows his place in the world and can “pass” as normal much of the time. He is not angry or depressed. When I read about others in much more difficult situations, my heart goes out to them. My impatience with Ralph’s inability to carry on a conversation about some issue that I happen to be fired up about, my annoyance when I’m stuck with some chore he used to do, these are obviously petty problems in comparison.

And yet. And yet. Thinking for two is draining. Always putting his needs first is draining. And allowing myself to share/embrace the less demanding mindset/lifestyle he requires is not draining, but way too easy.

Am I mentally tired or mentally lazy? Probably a little of both. Spending as much time as I do with Ralph, repeating and explaining, making sure his life runs as smoothly as possible, acting as a buffer between him and his anxieties, wears me out. But there is also something lulling about the undemanding simplicity of the life he prefers and which I increasingly share. It is tempting to limit my focus on our meals, our pets, the weather, small housekeeping issues, and the novels we both love to read. (I spent the last few days, in fact, re-reading Trollope’s Barchester Towers, to escape the upside-down political realities and to refresh myself enough to write here.)

But carrying out tasks, and even taking on new ones like volunteering, is not really the real problem. “Chop Wood Carry Water” and all. More difficult these days is thinking. Anxiety affects my logical and organizational thinking now that I am making decisions for Ralph as well as myself, particularly in areas where he used to excel like financial and future planning decisions—decisions I frankly don’t much want to make or think about at all. Nevertheless I know I handle them competently enough to get us by. What I am not doing is creative thinking. I don’t seem to have room in my brain. And so far at least, “Chop Wood, Carry Water” has not cleared the way.

If I am honest, what has paralyzed, or at least enervated me is a growing fear of what the future holds. For years now, I embraced the present, the plateau I have written about here. I didn’t let myself think about the future. That future is harder and harder to ignore. I see the small signs and I begin to envision the possibilities. Not only the realities of Ralph’s eventual mental and physical downward slide, of the eventual need to face moving, but of my own eventual diminishment. It is incredibly frightening.

Yet, the flip side is that in facing my terror I also receive the gift of empathy, because I can’t help realizing this terror is what Ralph faces every minute of every day. And that recognition gives me a greater capacity to appreciate him and our life together.

Which is a good thing since we are about to drive alone together for the next six hours…..

2 Conversations With Ralph–one bittersweet, the other just bitter

 

When the kids were small, I always knew our best conversations happened in the car.dialogue.jpgStrapped in seatbelts the kids tended to open up more about their lives; now Ralph does the same. We were driving home from a visit to his dermatologist when he brought up an issue that has clearly been bothering him.

“My IQ score has dropped,” he announced out of the blue. “Is that normal?”

“How do you know that?”

“I saw it on my chart last visit.”

I don’t know how he saw this nugget of information (or even if he read it right), let alone remembered, but I realize that problems  he cannot sort out seem to get stuck in his brain, like gum on the bottom on his shoe that he can’t shake off.

“Well memory probably affects IQ results.”

“117 is still above average though right?”

“Right.” My heart ached with protective affection.

…xxx…

On the other hand, Ralph and I have always had our worst conversations at night when we are tired and Ralph has had some drinks.

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So last night while I was trying to relax after a long day by watching mindless TV at the kitchen table, Ralph stormed out of the bedroom.

“What was the name of that real estate agent who tricked you into selling too cheap?”

I told him the names of the agents we used, one a friend of his. He grumbled some more and went back to bed, only to return moments later and begin to rant about how we were cheated and I should have known better.

He was talking about some property we sold in 2013, the year he got his diagnosis and was still half running things. He had chosen the agent and begun the negotiations pre-diagnosis; I had completed the deal post-diagnosis. Ralph and I had discussed the terms exhaustively. I didn’t want to sell the building at the time but he insisted.

Those months were among the worst in my life, a time I’d rather not remember myself, filled with my mother’s precipitously failing health, Ralph’s heightened, often angry anxiety over his diagnosis, our desperation to sell our business profitably, the sharp learning curve I had to master while laid up in a cast after I crushed my ankle falling on black ice. I did not necessarily make stellar business decisions, but frankly I handled it all pretty damn well considering.

In Ralph’s head last night, we had sold the property just weeks ago and he was obviously obsessing over the numbers (which he had wrong). As he began to berate me, I pretended to be absorbed in Saturday Night Live. In fact I was stewing in resentment and in memories of Ralph during the middle years of our marriage when I often felt he bullied me.

Then he switched gears.

“Where’s our money now? Who are those people who supposedly manage our investments? How do you know they are not going to take our money? You need to make sure they can’t steal our money.”

What I felt as he ranted was about as far from protective affection as you can get—hot white hate tinged with damp self-pity that I was stuck with him until one of us died.

This morning Ralph brought me coffee in bed, as sweet as could be. The conversation has erased itself from his brain as if it never occurred. I wish I could say the same, but I can’t.

 …xxx…

 

*A side note: as we were entering the examining room, the nurse behind the desk said to another nearby, “The Alzheimer’s patient is here now.” I clearly heard and am sure Ralph did too, but neither of us brought it up, not even in the car.

 

RALPH TRAVELS TO BABYLAND WITH MIXED RESULTS

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The picture above of Ralph holding his namesake may be a bit misleading. During the recent ten days Ralph and I spent in New Orleans to hang out with our now three-month-old grandson, Ralph held babyRalph exactly twice.

And that was after much prodding.

But he did hold him. And he did survive ten days away from the farm. (In fact I had booked an airbnb for ten days knowing we might leave early if necessary.) So over all, I’d say it was a victory, a pyrrhic victory…

He was not unhappy. Our son came down from NYC to surprise Ralph and meet babyRalph. Big Ralph was pleased and quite animated the first night. After that he read his book and napped a lot on the couch while the rest of us cared for and played with babyRalph in the next room.

Mostly Ralph drank coffee or beer and smoked cigarettes on my daughter’s front porch. Pretty much the same way he fills his time at home. Fortunately, my daughter recently moved into a renovated New Orleans shotgun with both a front porch. By the second day, Ralph had met pretty much everyone on my daughter’s small street where the neighbors all interact —white, black, Latino, gay and straight, elderly and hipster. Everyone thought Ralph was charming because while talking to strangers who demanded only the smallest small talk, he came to life. But with us inside, he was slightly removed, in a vague fog or intimidated by the hubbub surrounding the baby.

Frankly I found grannynannying while watching out for Ralph exhausting. Physically exhausting because I was running him back and forth from the airbnb where he slept twelve hours every night while I helped with the baby’s early morning feedings. And definitely emotionally exhausting as I tried to be grandmother, mother, wife and caregiver.

On the drive home, we shared what has become a rare moment of genuine conversation. Ralph acknowledged that travelling seems to make his memory worse, that leaving the comfort of his routine was difficult for him. I said I could see that. Then we went back to listening to a Bob Dylan cd.

But the unspoken message hung in the air—no more travel for Ralph.

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…