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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RALPH’S TRACTOR: TRIALS AND TRIBULATIONS

 

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In the last few weeks, Ralph has been in rare good form around outsiders. At a Labor Day gathering, he bonded with one of my more difficult professional associates while they shared a secret smoke on the back porch. Then for a week he totally charmed three medical students who evacuated to us from Florida during Hurricane Irma. The kids, whom we’d not met before, could not hear enough of Ralph’s stories.

But during this same time Ralph’s complicated combination of memory loss and memory fixation has rotated in a whirlpool around one small—although physically not so small—issue: Ralph’s John Deere tractor.

He loves his tractor, the same way he loved his boat. When it became clear he could no longer manage the boat, our family came up with what turned out to be a perfect solution: Ralph gave the boat to our son-in-law but got to remain Captain Emeritus. Ralph loves the arrangement.

But the tractor, unlike the boat, is actually a necessity in our lives, not something we can give away; as long as we live on the farm, we need the tractor to mow our hayfields. I can drive the riding mower on the lawn near our house, but I am too mechanically challenged to drive the tractor. So is our handyman. As for Ralph, he says he is still capable, but he fortunately shows less and less interest in operating that big, potentially dangerous machine. The few other relatives Ralph trusts with the machine—my brother, my daughter, my son, my son-in-law—all live far away, but if fields are mowed three or four times a year that would be fine.

My brother mowed the fields last spring.

They were not mowed over the summer. My nephew who stayed with us for several months over the summer offered to help, but Ralph kept saying that he needed to do “a little work on the tractor” first. I frankly didn’t pay much attention, my own avoidance mechanism at play. My nephew went back to D.C. The “little work” never got done.

The grass in our fields has now grown at least as high as the proverbial elephant’s eye.

A few weeks ago, Ralph announced that the tractor’s problem was a leaking hose he couldn’t change himself. Without telling me, Ralph evidently called the number he had for Mr. B. who always did our tractor repair. Ralph announced that Mr. B. has retired but someone was coming out to fix the tractor.

I know, I know, I should have stepped in right then and called the number myself to get the details. Haven’t I learned by now that Ralph and service people don’t mix? And so began the following saga.

The next day I noticed that the tractor had been moved back into the barn. Ralph couldn’t remember moving it. I called and talked to Mr. B’s grandson C.B. He said he’d been out to our farm, had talked to Ralph, had ordered the hose replacement and would be back to put the hose on once it arrived. Ralph had no memory of this visit. For the next few days Ralph continually asked me about the tractor because he couldn’t hold onto the fact that the hose had been ordered. He didn’t remember talking to C.B. and didn’t know why the tractor was back in the barn. But he kept repeating that he didn’t trust C.B.’s competence since C.B. hadn’t accompanied his grandfather on previous repair visits. “He’s no Mr. B.” There was no way to convince Ralph otherwise.

A week went by. I called C.B. to ask how much longer before the hose would be in. C.B. said he’d already been out and changed the hose. I told Ralph who looked at the tractor and remained adamant that the hose had not been changed. He was more convinced than ever that C.B. ”Was no Mr. B.” I frankly had no clue. I called C.B. who promised he had changed the leaking hose. Ralph swore he hadn’t. I called C.B. yet again, apologetically explaining Ralph’s memory problem and asking that C.B. please call me from now on. C.B. said the green hose Ralph kept bringing up was not the one that was leaking. I told Ralph that C.B. had changed the small black hose, not the long green one Ralph thought was leaking. Ralph swore C.B. had changed the wrong hose. After all, “He’s no Mr. B.”

Nevertheless I got Ralph to turn on the tractor. The leak was gone. I stood beside Ralph and dialed C.B.’s number. While C.B. directed Ralph around the tractor so he could check the hoses, I stood by taking notes. After many, many repeated questions and answers, Ralph finally seemed to accept that the correct hose had been changed. I breathed a sigh of relief.

Too soon. The leak was gone but the tractor’s back end that connects to the bush hog would not go up and down. Ralph was sure C.B. “who is no Mr. B.” had broken the tractor.

I called C.B. He promised to come check the tractor again. A few days passed. Ralph became increasingly fixated into his loop of questions and refrains: Had the leak had been fixed? Which hose had been changed? C.B. was no Mr. B. (who had been reduced to being C.B.’s uncle. Was there some problem with the tractor?

C.B. arrived driving a large truck to haul the tractor back to his shop if necessary. Ralph climbed into the tractor and started it up. C.B. pushed a lever by Ralph’s seat. The back end rose and fell perfectly. Ralph and he tried it again. It worked again. And Again. And Again. Ralph agreed the tractor was fixed. C.B. left. (I am waiting for the bill.)

A happy if mysterious ending. C.B. said it was possibly air in the fuel line that needed to work its way out. But I can’t help wondering if Ralph was pushing the wrong lever? Or was it something else? There is no way for me to know.

But when Ralph announced he planned to mow the field yesterday morning, I quickly pointed out that he needed to rest up for his art class that afternoon. He agreed and hasn’t shown interest in mowing although he continues to ask, “What’s the status of the tractor?” multiple times a day.

I know I’ve been describing a relatively minor series of snafus. I can’t quite capture how and why the situation exhausted and depressed me so deeply. Except that it encapsulated the grinding frustration and irritation that so much of our life as become.

And yes, I am about to invite my brother down for a mowing trip asap.

FACING THE DARK EMOTIONS OF CAREGIVING

EMOTION.jpgI want to share Joy Johnston’s recent post COPING WITH THE DIFFICULT EMOTIONS OF CAREGIVING on her site The Memories Project and also try to answer the question Joy raises.

Joy writes:

“Caregiving is a tough task, both physically and emotionally. There are many emotions that can arise while one is a caregiver, and many are not pleasant. However, it is important to recognize, acknowledge and process these feelings. Caring.com offers an excellent article, The 7 Deadly Emotions of Caregiving: How to Cope

The 7 emotions the article focuses on includes:

  • Guilt
  • Resentment
  • Anger
  • Worry
  • Loneliness
  • Grief
  • Defensiveness

The article explains how these emotions arise while caregiving, the risks that come with these feelings and most importantly, what you can do about it. Many caregivers will find the above list familiar; some of us will experience one emotion more than another. For my mother, it was loneliness and worry; for me, it was worry, guilt and resentment.

I think it is important as caregivers to acknowledge what we feel, and equally as important to figure out how to best process these emotions so we don’t damage our own physical and mental well-being.

What caregiving emotions do you feel most consumed by, and how do you cope?”

Most consumed by? Hmmm.

Guilt is always with me, because I am so frequently full of Resentment, Anger and Defensiveness, the terrible trio that I fight constantly if often unsuccessfully. Worry, too, because it is generally tied closely to Guilt, Resentment, Anger and Defensiveness. I find it impossible to eliminate or even order my priority of emotions. Loneliness is strongest when I am beside Ralph unable to share in the communication on which our relationship was built. Grief seems a bit strong, overblown and pretentious for what I feel since others have much more to grieve about. But maybe if I’m honest I work to repress the primal strength of grief because typing this sentence a black wave of emotion washes over me, emotion I do not want to feel.

Of course we are all dealing with these emotions in one way or another everyday in small and large moments. But looking at them as a whole has given me a sense of perspective I can easily lose or at least forget.

 

(P.S. Thanks again Joy, for allowing me to share and for asking the question.)

A DIFFERENT KIND OF COGNITIVE TEST: REAL LIFE

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After writing about Ralph and my experience with organized cognitive tests, I watched Ralph in action in a different kind of cognitive challenge last Friday.

Living in the country without door-to-door garbage service, I travel weekly to the recycling center. I drive Ralph’s truck and take along Lola the dog for company. I drink a diet soda on the way and occasionally (read every time) treat myself to a candy bar afterwards. There is something oddly satisfying about coming home with empty cans and baskets.

But recently I pulled a back muscle grandmothering a bit too exuberantly and have avoided bending/lifting ever since. Meanwhile our garbage began piling up.

On Friday I couldn’t stand it any longer and announced to Ralph that after lunch we were heading to the dump. Now Ralph usually helps me load the garbage into his truck. Once or twice he has driven with me to the recycling center, which happens to be across from the location of his art classes. On those two occasions he enjoyed sitting in the truck with his dog and cigarette watching me unload, a choice I made because I figured I would be faster. He has never participated in throwing stuff away.

Recycling is does not require much detailed thought. After throwing unrecyclable garbage that’s been put in county bags, into a dumpster, I mindlessly divide everything else to toss in the marked bins. You probably know the drill: aluminum, plastic, newspaper, junk mail, cardboard, and glass by the color.

For Ralph our recycling trip was a challenge.

The dogs didn’t help. We decided not to bring them because old Zeus has trouble climbing into the truck these days so Lola needed to stay behind to keep him company. But then Zeus hid under the house so there was a bit of a kerfuffle until he showed up as we were backing out of the drive way  and we got him into the house. Ralph, already nervous—he’d called me three times while I was running to the bank beforehand to ask what he’d have to do—and now he was worrying about Zeus’s health as well as the garbage.

Usually I drive us everywhere these days, but driving Ralph’s truck with a bad back was not an option. It has been awhile since I sat in his passenger seat with him behind the wheel. He drives very carefully, going 35 in the 45-mile-an hour zone until I suggested, with mild (I hope) impatience, that he might consider the speed limit. (He does drive very carefully so if you are asking, as I do frequently, Is it safe for him to drive?, the answer is I think so as long as he doesn’t have to worry about finding his way alone. I hope I’m right)

In any case, we arrived safe and sound. But our time at the recycling center was not fun. Despite large clear labeling on the bins, Ralph could not keep track of where anything went. His difficulty was that I was asking him to combine several unfamiliar activities at once. I could feel his frustration mounting. I took a deep breath, had him bring the recyclables to me at the biggest bin, did as much emptying as I could manage and directed him hither and yon.

No stops for candy bars on the way home. But I thanked him profusely for his help. And Ralph was like a small boy desperately wanting to do well at a chore that was slightly beyond him and thrilled when he made it through.

Seeing him react, I realized that I have been letting him slide. If a situation might be difficult, I’ve avoided it. But Ralph can live with a little anxiety, and a gentle challenge enlivens him. So the next day, Saturday, I announced to Ralph that we were going into Atlanta to see the Andy Warhol exhibit at the High Museum. Painting is one of Ralph’s only activities after all.

He wasn’t thrilled but again he reluctantly agreed.

I drove.

On the way, when Ralph announced he was hungry, I got him to eschew his standby fast food choice. Instead we had lunch at the museum café. Suddenly Ralph got into the spirit. He talked about the courtyard artwork with enthusiasm, he ate with a gusto rare for him these days, he wandered through Warhold exhibit reading all the placards and studying the pieces. He tried to get me to buy stuff in the gift shop. Afterwards we paid a short visit to friends who live near the museum, and he was sharp as a tack.

Of course he doesn’t remember the trips to the dump or the museum or the friends. But I remember for us.

(PS Coming soon: The Tractor Drama unfolding as I type)

Thanking Merck For More Than Ralph’s Meds

 

I was sitting down to write about one of Ralph and my typical bittersweet interactions (a story that will have to wait) when I glanced at my on-line NY Times and saw this headline: Trump Attacks Merck Chief Kenneth Frazier for Quitting Advisory Panel

I admit I felt a swell of emotion when I read the article that followed.

 Like most Americans, I have less than warm feelings about the pharmaceutical industry,  which has caused much of the rise in health costs here. While Merck is behind the Alzheimer’s study Ralph is participating in, and which I have written about here as seeming to help Ralph, I never really thought much about the company itself. Just another giant corporation to distrust.

And like most Americans I was deeply distressed by the events in Charlottesville this weekend, and particularly distressed that such unapologetically violent expression of racism, homophobia and xenophobia is becoming normalized here. I am no fan of President Trump, but I really did hope he would put ego aside and rise to this occasion.

As Mr. Frazier tweeted, in quitting the President’s panel, “America’s leaders must honor our fundamental views by clearly rejecting expressions of hatred, bigotry and group supremacy, which run counter to the American ideal that all people are created equal

According to the Times article, Mr. Trump quickly sent a nasty tweet in response. The fact that Mr. Frazier happens to be black only adds to the drama. As I am writing this in real time, I realize that when you read this post, the news of the back and forth between the President and the CEO will probably by old hat.

But sitting here about to write about my daily private life with Ralph and Alzheimer’s, the news feels very personal. I never thought I would be proud to be associated with a drug company, and yet here I am bragging of that association.

Aren’t life’s interconnections strange and wonderful.

 

 

FINDING MYSELF IN RALPH’S TESTING CHAIR

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I am participating in Emory University’s Healthy Brain Study, part of the university’s Healthy Aging Study. While the Aging Study, the largest of its kind, uses on-line feedback to research multiple health issues related to aging, the Brain Study takes a more involved approach to researching the predictors of Alzheimer’s.

In other words, I can expect to be tested and prodded for about six hours ever two years. I like the idea that I have found a way to participate actively, not simply as Ralph’s caregiver. However, my first visit was frankly disconcerting: I HAD TO TAKE THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING.

I remember Ralph’s first test experience. Or I remember my experience: sitting in a waiting room for two hours reading gossip magazines until he emerged slightly gray around the gills. On the drive home he complained about how much he hated the process while I put on a cheery, encouraging face aware he’d probably not done well. (He had not.)

Since then, every time we head to the Emory Brain Health Center, Ralph asks worriedly if he’s going to be tested. I have learned to say, ‘I don’t know,’ to avoid making him more anxious than he already is. I am told that he is always quite cheerful and communicative in the actual testing, but he leaves each visit saying he feels “disoriented,” and “more foggy than usual.”

I am always sympathetic. Or I try to be. I admit that I have grown just a teensy bit callous after hearing the same phrases over and over; a small, not nice part of me shrugs off his complaints, secretly thinking, It’s a test, get over it.

So there I was, only a few weeks after Ralph’s most recent test, sitting at a desk about to embark on my own mental examination. It didn’t help that the test giver and I actually knew each other slightly, having worked together on a hospital improvement project. Once the test began she was a neutral blank.

I started sweating at the first easy question. It didn’t help that I recognized I was facing the same slate of mental exercises that Ralph has faced, that I knew how many words he remembered in one exercise and how many mistakes he made in another and how much time he took to complete a third task.

I started strong but could feel myself tiring mentally as the tests wore on. My concentration wandered when it shouldn’t. I missed some obvious answers. I began to struggle. And in the follow-the-dots a-1-b-2, a test in which Ralph made two mistakes this year but none last year, I somehow skipped my last letter; not a good feeling even if I was at least twice as fast.

The Bottom Line: I WAS TAKING THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING AND I DIDN’T LIKE IT ONE BIT.

I knew rationally that everyone who takes the test feels that she screwed up, and I knew I basically did okay. No matter. By the time I stumbled out into the daylight I felt, you guessed it, “disoriented” and “more foggy than usual.”

Not great feelings but an excellent wake up call. I felt  a new infusion of empathy for Ralph (and others in his situation). Most of us can laugh off our mental lapses—misplaced keys, names on the tips of our tongues—but Ralph goes into each test, lives each day, each minute, struggling against dark impenetrable holes that he feels deepening. Having had my little taste of fear, I admire his bravery (and the bravery of his fellow travelers in Alzheimer’s) all the more.

I Commemorate my Dad’s 100th Anniversary; Ralph Celebrates Him Daily

scotch.jpgMy father would have turned 100 yesterday if he were still alive. Ralph and I celebrated with one of Dad’s favorite dinners: roast beef with truffle sauce, or rather a cheap cut of beef I found on sale and a dab of Croatian truffle olive spread we received as a gift.

“I really miss Charles,” Ralph said several times during the meal. Charles was my father. Ralph brings him up almost every night at dinner. And frequently at other times as well.

“You know I was thinking about your dad today.” “Remember the time your dad….” Charles was a character.” “I really miss old Charles.”

Me too.

My father was tall and elegant, charismatic if not traditionally handsome (bald but in a Yul Brenner way), an extrovert both charming and domineering. And he definitely had a temper. My siblings would agree that he was a better father to his daughters than to his sons, who were made to feel that they didn’t live up to his standards and expectations. My sister and I adored him, and as a little girl I never doubted that he adored me back, but our relationship grew complicated during my teens as I began to rebel. We never quite regained the closeness.

But if anything redeemed me in my father’s eyes it was Ralph.

Ralph and Charles were soul mates. They came from completely different backgrounds—my father the son of a Russian Jewish immigrant who made good and sent my father to an Ivy League college, Ralph the son of a Pentecostal mother who spoke in tongues and a father raised dirt poor in the hills of Alabama with ancestors who fought in the Civil War and possibly the American Revolution—yet they recognized themselves in each other from their first meeting.

They liked to schmooze as my father called their never-ending conversations about business and politics. Again, it would seem they had little in common. My father ran the business his father had started; Ralph was an entrepreneur just starting his real estate business when they met; my father was a Nixon republican, Ralph still a socialist when I introduced them. Nevertheless they talked and they talked and they talked, often loudly though never angrily, into the wee hours long after my mother and I had gone to bed. No doubt they were fueled by scotch, my father’s drink of choice, which he introduced to Ralph.

After a restaurant dinner with my parents months before Ralph and I ever discussed marriage, Ralph told me that my father had proposed while I was in the ladies room. My father used my absence as an opportunity to tell Ralph he would be very happy to have him as a son-in-law. I am not sure how Ralph responded.

Of course I was pleased that my father approved of my choice in husbands, but I admit I was also a bit jealous that my father clearly enjoyed Ralph’s company more than mine. I can only imagine what my brothers felt witnessing Ralph and Charles’s rapport, a rapport they did not have as Charles’s sons.

As for Ralph—whose own father, a skilled but uneducated mechanic, was a master sergeant when he retired after twenty years in the air force and never quite adapted to life as a civilian—he suddenly had the father he’d always wanted. He listened to my father’s advice with rapt attention. He lapped up the affection and praise.

And when my father died at 73, Ralph mourned much more deeply than he had when his own father died.

Months later, a whippoorwill settle outside our bedroom window at the farm and Ralph and I began to joke that the bird was my father’s reincarnation keeping us up at night . It was a comforting joke, an intimacy I look back to now with nostalgia, but it was a joke, a way to ignore or minimize sorrow.

Since Ralph’s cognitive impairment began, my father has loomed larger in his memory. As I have mentioned before, Ralph only holds onto happy memories these days. And his memories of my father are among his happiest. In the last few years he has decided that my father’s old marble top bar, now in our small formal parlor, is haunted by my father. In a good way of course. At least several times a week he calls me to come into the room because he senses my father’s presence.

Pre-MCI Ralph might have joked about a whippoorwill, but he is completely sincere now. And his belief is NOT a case of dementia. It is a case of affection so strong that it has taken a shape or at least a form. For all the negatives of Alzheimer’s, Ralph’s ability to feel purely is really a joy. And I am a little envious of his relationship with my father all over again.