Category Archives: Alzheimer’s Spouse Issue

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.)

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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

woman test

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.

Ralph’s Annual Mental Check Up

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Ralph had his yearly mental check up yesterday. A slow learner, after four years I have finally realized that there is no reason to bring up appointments ahead of time. So when he woke up at eight, I announced we had to be ready in two hours to head to Atlanta to see his doctor at Emory. Of course, Ralph was a little tense on the drive in, but less anxious than he would have been if he’d had more time to worry. And I didn’t have to have the following conversation in the car more than a few times.

Head or hands? he asked. (We have seen a dermatologist at Emory recently as well so asking this was a positive sign.)

Head.

What are they going to do?

Ask you some questions probably.

Will it take long?

I don’t think too long.

I am not looking forward to this.

I nodded but secretly I have come to look forward to our Emory visits with Nurse Practitioner Stephanie V. While Ralph gets his testing, Stephanie always meets with me alone for an update, a conversation that I find strangely comforting. She asks my impressions, and then lets me ramble a bit. Her advice tends to be straightforward and useful. She never fails to ask how I am doing. I always get not quite teary but close. I always leave feeling reassured that I am handling things better than I thought.

As for the appointment results… Amazingly, they showed exactly what I told Stephanie I’ve sensed: that his objective memory, for words for instance, seems to be holding steady; but that he seems to be having more difficulty  carrying on conversations or activities like following directions that require more complicated processing.

In the testing Ralph actually improved his memory for words, remembering more animal names and more words beginning with the letter F. (At least that’s my memory of the results—in fact as soon as I leave Emory my own memory of what has been said becomes a bit of a blur.)

What dropped was his ability to connect the dots when he had to include numbers and letters, i.e., go from number to letter to number. The test, which he completed without errors last year in 70 seconds, took him 120 seconds this year with several mistakes. In other words he is having more trouble with more complicated linkage.

I am not sure how to read this reversal in strength and weakness and don’t think it matters too much. Basically, the holding pattern we have been in still holds and will keep holding until it doesn’t.

Ralph’s Night to Shine (And Forget Alzheimer’s)

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It never fails. Whenever I start complaining about my life as a caretaker spouse, events remind me to shut up, stop griping and recognize the good stuff.

Case in point, we had house full of guests last week:

My 20-something nephew living with us for the summer while doing an internship; my 13-year-old (step)granddaughter was having one of summer weeks at the farm; and a photographer from out-of-state here to defend (with my support) her local portrait project, which was being attacked as too controversial by some members of the project’s sponsoring art organization board on which I serve.

So the five of us were sitting around the dinner table, one of those big group meals at which Ralph and I used to excel and which I tend to avoid now because I hate sitting beside Ralph as he withdraws into silence unable to follow the thread of conversation. What I usually feel is a mixture of guilt that I am not finding a way to include him and impatience that he is ruining my enjoyment. (And the truth is it is my responsibility to make him comfortable in a variety of situations and I sometimes chafe under that responsibility.)

What I felt the other night was, well it was envy. Ralph was so damn charming that the three others at the table—for whom I’d been working all day to entertain in different ways—were enraptured. Even the 13-year-old, jaded as only a 13-year-old girl can be—sat up straight an listened with fascination as Ralph told his stories about meeting MLK Jr. The photographer leaned over to whisper how handsome he was. My nephew acknowledged that Ralph scared him when he was a little boy. “You weren’t mean, but you were stern,” my nephew said. The 13-year-old smiled slyly because the Ralph she knows is a pushover softie. Ralph agreed with her.

My envy reminded me how I used to feel in my introverted twenties when I was in a group setting with Ralph and he was the energy force around which everyone orbited. In those days I was obviously drawn to his charisma, if a little jealous of sharing it with others.

This envy was oddly refreshing. I admit I kind of like my new role as the social butterfly in our marriage but it can be tiring. I have become so used to being the one responsible that it took a moment for me to relax and let Ralph hold the limelight for a change. Once I did relax, what I really felt was wifely pride in Ralph’s charm. And even a little wifely love.

(But I can’t get too Pollyannish because the next day, exhausted by his social efforts, Ralph was more foggy than ever.)