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alzheimers caregiver

Nancy Moss as a poster girl in a hospital in the late 1950s.

Part 2: Lessons Learned as an Alzheimer's Caregiver

Love, love, love. In my nine years as an Alzheimer’s caregiver I kept repeating these words to myself. But on 13 February, the love of my last 58 years, wife Nancy (or Nance as I usually called her), died of Alzheimer's complications. First signs of the disease appeared in January 2013. In October 2021, her neurologist concluded she was in the final stage of that disease.

In addition, for years Nance had also been troubled by bad-back issues. In September 2021 she fell and broke her left collarbone, and on January 1, 2022 (a day before her birthday) another fall resulted in a broken right femur near her hip. Through all her suffering and being in and out of the hospital, a physical therapy facility, a fine nearby rehabilitation center, and then in her final month receiving home-hospice care, Nance courageously dealt with all her health issues, sometimes with sadness or perplexity, sometimes with hope or humor.

The same year that I first noticed serious signs of her memory loss, 2013, was also the year of our 50th wedding anniversary. So in the succeeding nine years, it naturally fell to me to become her primary caregiver. Our three kids were at times a big help, but our oldest child (Jenny), although only about 25 miles away, has a full-time job and (as a single mother) has a high-school daughter to raise, and our two middle-aged sons (Tom and Dan) live far from us, and they and their wives have all together now five children. Conversely, by 2013 Nance and I had both retired, and we had no other more pressing concerns than taking care of each other.

In my caregiver years I learned much, but primarily three things, two regarding positive approaches—the vital importance of love and embracing the heroic—and one about a negative path that should be shunned like the plague—self-pity.

In my caregiver years I learned much, but primarily three things, two regarding positive approaches—the vital importance of love and embracing the heroic—and one about a negative path that should be shunned like the plague—self-pity.

The remainder of this essay will 1) sum up Nance’s decline from 2013 to early 2021; 2) summarize in this downward spiral our complex and interactive reactions; 3) highlight the most important developments in the last year of her life; and 4) sum up my final thoughts regarding this nine-year trip with Nance through the bewildering land of Alzheimer’s.

Others’ caregivers’ experiences may vary considerably from my own. Some are not even spouses. Perhaps they are sons or, more commonly, daughters. But I hope all of them can relate to my words on love, heroism, and avoiding self-pity.

Before her serious memory loss appeared, Nance was in the words of one of her former co-workers at Eastern Michigan U.’s (EMU’s) Student Health Center, “a very special woman, very caring, loving and kind.” And this caring even extended to the animal world. Once, after she had retired early in our present century, while walking with friends, she saw a skunk trying unsuccessfully to pull a plastic or paper cup off its mouth. Despite the danger of being sprayed, Nance aided the skunk by removing it.

Although signs of her serious memory loss in regard to current events and locations had appeared from at least January 2013, the greatest shock that year came in October when she could not recall where we had gone in September to celebrate our 50th wedding anniversary. Mainly, it had been Washington, D.C., where we had spent the first four years of our marriage and where Jenny was born; Ocean City, Maryland, where we had honeymooned; and Wheeling, West Virginia, where I had taught for three years before our move to Michigan and where son Tom was born. But a month after our trip Nance could not even recall what cities we had visited.

Although I’ll deal more in the next section with her hesitancies, and often downright refusal, to admit she had Alzheimer's, by mid-2014 I had somehow persuaded Nance to see a neurologist—Dr. Theron Dobson at St Joseph’s Hospital, where she had worked part time some three decades earlier as an Emergency Room nurse. In April, Nance had an MRI he ordered for her, and when we went to see him, he showed us where in her brain there had been some deterioration leading to memory loss. His diagnosis: early to mid-stage Alzheimer's. (He remained her neurologist for the next eight years, always displaying compassionate and empathetic concern for her.)

She liked him, but because our every-six-months visits reminded her of the ugly Alzheimer's truths she’d rather forget, we eventually scaled the visits back to once a year. But at least Nance never complained as another Alzheimer’s suffer, singer Glen Campbell, did when his neurologist asked him who the president was—a standard memory-test question. Campbell’s complaint? That doctor doesn’t even know who the president is.

Early in our visits, Dr. Dobson convinced Nance to start taking Donepezil. He told us nothing could cure Alzheimer’s—which is still true—but this medicine might slow down its progression. Until her life’s end, this was the only Alzheimer’s medicine she took. I kept my eyes open for new research that might hold some promise of curing her, but none appeared. I also suggested a clinical trial or two, but none really seemed that promising, and Nance demonstrated little enthusiasm for subjecting herself to any of them.

From 2014 through 2020 Nance’s Alzheimer’s problems broadened. She had always taken care of most of our family obligations, for example, cooking, shopping, doing dishes and the laundry, paying most bills, even sometimes helping cut the grass. Only household repairs, investing, and tasks requiring greater computer skills usually fell to me. Now we had to reevaluate.

A main problem was that she began forgetting more and more, and I was unable to convince her to compensate partially by writing frequent notes to herself—doing so, I guess, would have been too painful a reminder that she had Alzheimer’s. By early 2015, after Nance lost her wallet, forgot items at the grocery store and whether she put certain ingredients in a cake, I was doing more of our family chores. She, however, still insisted on doing many of them, such as cooking and laundry. I also started calling her at home when I went to play golf twice a week to make sure she was okay, and I suggested she take our cell phone whenever she went out (for example, shopping or to play golf). She did so and sometimes phoned me when she forgot how to get to a certain destination.

Social situations also became more problematic. In December 2014, Nance asked a father how his son (who had been the best friend of one of our son’s) was doing. Although she had earlier known the man’s son had tragically died, she had forgotten about it. Since she did not want anyone to know she had Alzheimer’s, such lapses became difficult to explain.

Travel, mainly to visit our sons in Florida and Colorado, also became harder. In 2015 Nance went for a little walk inside an airport, but then forgot where I was waiting for her. In 2017, she went out to stroll on a Florida beach (without telling me she was going to do so), and got lost until I was able to find her. She also went on three brief road trips to Indiana. On two of them, accompanying our daughter Jenny and granddaughter Amanda, who was playing in a lacrosse tournament in Indianapolis, she visited with her sister, Bev. On the third trip, which occurred between the other two, I drove her to attend late-2017 funeral ceremonies for Bev’s husband, Mike. Such trips always produced some disorientation and anxieties for Nance.

In 2015, because of my reluctance to leave her for very long by herself, I refused an invitation to speak at a conference concerning Russia in the city of Kaliningrad, which since the end of WWII had become part of the USSR/Russia. Nance told me to go and insisted she could take care of herself and even cried a little at the thought that she could not, but the conference simply did not seem important enough to take the risk.

By early 2016, I had taken over all the grocery shopping, trying to soften this transfer of responsibilities by telling Nance that now that I had been retired for about six years it was about time I started doing more chores. Since she was having trouble getting dinner ready with any regularity, I also began helping more with the planning and preparation, gradually (by mid-2021) also doing taking over the cooking.

Outside, Nance still wanted to help cut the grass in our large yard, but we had an electric lawnmower and it became increasingly tough for her to cut much and to keep the cord from getting tangled. I told her I didn’t mind doing it all, that it was good exercise, and that I needed and enjoyed it. But, except when her back bothered her a lot, she still wanted to help.

From 2016 until her death she had frequent back issues. Her pains were exacerbated by osteoporosis—by late 2021 she was down to about 5 foot 2, whereas in middle age she had been 5 foot 6. Trips to doctors, X-Rays, MRIs, Tylenol Extra Strength, pain lotions, trips to physical therapy facilities and exercise classes, and finally a walker and wheelchair—she experienced them all. She who had once walked so briskly—faster than I—and loved to walk back and forth from home (about 3 miles total) to her job at the EMU Student Health Center.

Although easily confused if she drove in unfamiliar areas, she was still able up until early 2019 to take a neighbor to her nearby weekly hair appointment and then have lunch—the neighbor died later that year. But in the summer of 2018, she drove to a restaurant (about 3 miles away) to dine with some friends and parked our car on the street a few blocks away. But when she came out, she forgot where she parked it. One of her friends called me and after driving around for more than an hour we found it.

alzheimers caregiver

1999 Left to R. = Tom’s wife, Kathy, Walt, Nancy, Dan, daughter Jenny

By mid-2019 she seldom drove anymore, and by 2021 not at all. We no longer took any road trips, and when we went together somewhere locally I always drove, even as I had done earlier. But what had especially changed was by 2020 Nance had no desire to engage in outside events with friends--perhaps she feared her memory loss would become too evident to them. Only weekly visits from our daughter broke up the monotony of dealing with me day after day.

Several years earlier, Nance had walked daily with a few friends, but now, partly because of back pain, she no longer did. Some of her other leisure activities also changed. She no longer read novels, a practice we had both enjoyed for many years. Now, however, by the time she completed a chapter, she often forgot earlier details. So she read more short fiction by writers such as Chekhov, William Trevor, and Alice Munro. Our television watching also underwent a shift to less movies--often too long and complex—and more hour or half hour dramas or sitcoms. She especially liked Larry David’s Curb Your Enthusiasm, reruns of Seinfeld and Cheers, and nature programs.

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Doing crosswords and word-searches also took up much of her leisure time, and she became almost obsessive about picking pieces of hair, lint, or paper off her chair, the floor, or her clothing.

By 2020, she also moved much slower than she had before Alzheimer’s started taking its toll, and she ate less—almost always thinking she could eat more than she acutely did.

The relationship between the Alzheimer’s afflicted (most often women) and her/his primary caregiver is crucial. There is a constant interplay of action and reaction. A major difference sometimes forgotten, however, is that while the one with the disease is fully occupied just dealing with the bewildering diminishments that continuously occur, the caregiver can still often continue evolving, both mentally and morally.

In our case, it was especially sad to see Nance’s self-development so curtailed, for earlier she was continuously learning—she had obtained a BA degree (Magna Cum Laude) at age 56. Nevertheless, when Nance displayed a new symptom (or faced a new Alzheimer’s issue) we would both react to it in our own ways and then react to each other’s reaction.

In our nine-year struggle, I realized early some important truths, such as the primacy of loving her more than ever, but the imperfections of my personality often prevented me from being the loving, patient, empathetic husband that I wish I had constantly been. Looking back now, I’m aware that I could have eased her decline better, could have brought her more happiness, and this knowledge pains me deeply. It is especially painful now recalling instances like her forgetting (in the summer of 2018) where she parked our car and imagining how terrible and anxious she must have felt.

Before proceeding further, a few words about Nance’s personality. She was modest and self-effacing, never wanting to be a burden on anybody. Already in 2013 she expressed this regarding her memory lapses despite my assurances that for all she had done for me in the past half century, I more than owed her all the care and love I could give. From my perspective, she also cared too much what people thought of her—she had often told me that when she was young her mother always said to her, “What will people think?” And Nance could never quite overcome that concern. She had always been more of a worrier than I, and Alzheimer’s did not change that.

She was also not an attack-a-problem-head-on and with gusto type of individual. In this sense, we were opposites, and I thought that if I had Alzheimer’s I would face it squarely, tell people I had it, and take all the steps I could to mitigate its effects. Naturally, at first, I thought this was the approach Nance should take. But I was not sensitive enough, not empathetic enough, to her singular personality. She seldom wanted to admit, to herself or anyone else, that she had Alzheimer’s—thus until early 2021 we avoided the word, outside our immediate family, when speaking of her forgetfulness.

I realize now it was exactly because she was the way she was that I was first drawn to her. Yes, she was physically and morally attractive, a very kind and caring person, and I loved that about her, but she also allowed me to be the take-charge decider, a role I enjoyed.

As Nance increasingly lost her memory and abilities, she also lost some of her confidence and sense of self-worth, and she needed more reassurances. Increasingly bewildered and confused, she wanted me close by and became jealous of anyone else or any non-Nancy activity that deflected my attention from her. I see this clearly now; I didn’t always at the time. When she complained, as she already did in 2017, that I didn’t tell her something, that we didn’t do enough together, or that I’d be happy when she died so I could get a new wife, I sometimes got defensive, even angry, and told her that I did tell her (what she had forgotten); we had never before spent so much time together; and that I didn’t want a new wife. Sometimes I just hugged her and told her I loved her, but I wish now I had always done that.

Part of the problem was our difficulty in communicating. Nance had never been one to talk much about herself or how and why she felt the way she did. And this problem just worsened as the Alzheimer’s did. Thus, as is almost always the case with observing those in the middle and late stages of the disease, we can only guess what they’re going through, what they’re thinking and feeling. 

I knew that what she mainly needed was love, not my defensive comebacks, no matter how true.

Yet I can’t plead complete ignorance, especially in the first few years. I knew that what she mainly needed was love, not my defensive comebacks, no matter how true. In my notes for 2013, I wrote, “I don’t want to push [Nance] more [toward recognizing she has a serious memory problem] because I’m afraid it will erode her trust and confidence in me.” And I thought it was “ABSOLUTELY essential that she always feels she can trust and rely on me. If she ever felt she could not, it would be terrible for her.” I also noted that “the only way to deal with whatever condition Nance might have is love, love, love.” And I knew how fortunate I was to have her to love. In a 2014 essay, I wrote, “I consider this [my marriage to Nancy] the greatest blessing of my fortunate life. Love in all its magnificent varieties is the greatest thing in existence, and for a half century I have had someone in my life whom it is easy to love.”

Growing up Catholic, I was familiar with St. Paul’s words in 1 Corinthians 13: “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.” And, “If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.”

More recently (in 2011), I had written a long essay on the “The Wisdom of Dorothy Day,” which contained this gem from her: “If we could only learn that the only important thing is love, and that we will be judged on love—to keep on loving, and showing that love, and expressing that love, over and over, whether we feel it or not, seventy times seven, to mothers-in-law, to husbands, to children—and to be oblivious of insult, or hurt, or injury—not to see them, not to hear them. It is a hard, hard doctrine.” In the spring of 2013, I again quoted these words in a shorter essay, “Love: the Greatest Wisdom Virtue.”

“Hard, hard,” indeed, for I had no training in caring for anyone sick, was not blessed with patience, and was not especially empathetic in my earlier years. (These were more the type of virtues Nance had.) I was also a more cerebral than caring person.

An article I wrote for LA Progressive, “Alzheimer’s, Love, Literature, and Reality,” in December 2014, indicates some of my thinking at the time. It reviewed books and movies I had recently read and seen on the subject, and I explained my interest because my mom had had the disease, which she truly had. Nance usually proofed my essays before I sent them away and, continuing to honor her wishes, I didn’t dare mention that she also had it.

I did, however, quote an essay by Bob DeMarco, whose mother had Alzheimer’s. He admitted that at first, he took the wrong approach, a confession I could relate to: “I’d made all our interactions about me . . . me getting mad when she wouldn’t take a shower, me trying to tell her she just ate when she said, ‘I’m hungry.’ What had to change was me—my reactions, my actions, my words, my emotions.” He finally concluded that he had to enter her world—“Alzheimer’s World,” as he came to call it. He then listed “some of the tips” he wished he had discovered earlier: “Use the local transportation. . . . Speak the local language. . . . Follow the local pace. . . . Never forget you’re in a new place.”

This was great advice. I had frequently traveled to foreign places, often with Nance—the latest (with her) in 2011 to Croatia, Slovenia, and finally to Belgium to participate in a conference—and I could relate to the Alzheimer’s world being like a foreign country.

alzheimers caregiver

2009, Nancy, grandaughter Amanda, daughter Jenny

I concluded my December 2014 essay with these words, “If we conclude, as I do, that nothing is more important in life than love, then Alzheimer’s cannot rob caregivers of our most essential human quality; it can even heighten it.” I had also begun to understand how important empathy is, that virtue where you put yourself in someone else’s shoes. “Good Alzheimer’s caregiving necessitates empathy, and plenty of it,” I stated.

Yet, despite my growing awareness of how best to react to Alzheimer’s, I often failed to act as my best self knew I should. I often acted as St, Paul once wrote (in Romans 7:19): “For the good which I have a mind to do, I do not: but the evil which I have no mind to do, that I do.” How many times in our last nine years together did I, for example, loose my patience? Regretfully, too many.

Other problems were less central, but one was deciding how to balance caring for Nance with my own self-care to avoid caregiver burnout. My leaving Nance, even for short periods, became a serious issue between us, but we’ll examine that more thoroughly in our next section. 

But before we go there, two more points. By mid-2018 I realized one more important truth: caregivers should avoid self-pity and embrace their caregiving as a noble, even heroic, endeavor. In a January, 2018 essay,  “Old Aging as a Heroic Quest,” I wrote, “The extent of attention and patience required of caregivers, especially for a loved-one in the latter stages of Alzheimer’s, can hardly be imagined by someone who has had no experience with the disease. If the care is to be done lovingly and well it requires behavior that is truly heroic.” And, “the great danger is that . . . we reject the challenge . . . and succumb to self-pity.” As the actor and author Stephen Fry once stated, “Self pity is the worst possible emotion anyone can have. And the most destructive.” 

walter moss

Walter Moss

The second point is that by late 2020, like almost everybody else in the USA and rest of the globe, we were being affected by the spread of the coronavirus. In early 2020, for example, the exercise classes that Nance and I were going to at the Ypsilanti Senior Center were canceled.

Walter G. Moss

Nancy Moss Memorial Site