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Lessons Learned as an Alzheimers Caregiver

Nancy and Walter Moss on a cruise in 1995.

Part 1: 9 Years an Alzheimer’s Caregiver: What Did I Learn?

During the last year of Nance’s life, both her general health and Alzheimer’s got much worse. In May 2021, I noted that “for a week or two Nance’s back has been real bad, and it is very hard to get her to exercise much”—the previous December, I had bought her an exercise bike, which I put up in our TV room; but she was not enthusiastic, to put it mildly, about using it. In early July our two sons, Tom and Dan, came to town with their families, and to talk to Nance any of them, or daughter Jenny and her daughter Amanda, usually had to go to her upstairs bedroom, where she lie resting her back.

After they all returned back to their homes Nance went to nearby St. Joseph’s Pain Institute where she had a steroid shot, a procedure repeated the following month (August). The shots helped a little, and on a few occasions thereafter, with my assistance, Nance was able to walk about a quarter of a mile using a walker.

Then, however, a further complication occurred: in mid-September Nance fell and broke her left clavicle. It occurred while I was out playing golf, a pastime I enjoyed but about which I had felt increasing guilt because of being gone from her. When I left that morning she was sitting in the sun in our dinning room working a crossword puzzle and listening to a John Denver CD. Next to the table where she was sitting, was her walker, and before I left I told her I would call her from the course to be sure she was okay and that if she got up to go to another room she should use her walker. Several hours later I called, and she did not answer. This sometimes occurred because she did not pick up quick enough, but then she would soon call me back. This time she did not, and after a little time passed I told my golfing buddy that I better quit and go home to make sure she was alright.

When I got home (about 15 minutes from the course) she was lying on the floor and said she fell on her shoulder and it hurt. When I asked how long she had been lying there, she did not know. I helped her up and noticed that she had not touched the walker. I asked her if she wanted me to take her to the ER and she said no. We decided to wait and see if her shoulder got better. I thought putting ice on it would be the best immediate treatment, but Nance hated cold and said no.

I had read enough about “caregiver burnout” to know that caregivers like me needed some relief, and yet I also knew that Nance would prefer that I almost never leave her side.

This injury incident was indicative of a problem with which I had long struggled. I had read enough about “caregiver burnout” to know that caregivers like me needed some relief, and yet I also knew that Nance would prefer that I almost never leave her side. How to square the two needs? Whenever I mentioned that maybe I should try to get somebody to come over and be with her while I was gone—besides grocery shopping, my twice-a-week golf playing was about the only times this occurred—she bristled saying she didn’t need anybody to come and “babysit” for her. Since she also tended to get angry if I mentioned “Alzheimer’s” or her memory problem, it was difficult for us to have any straightforward discussion of this dilemma.

Now, looking back on this situation, I still don’t know what the answer should have been. Presently, I realize more than I ever did, that she was floundering in a sea of confusion, afraid and desperately needing me, but unwilling to admit it, either to herself or me. On the other hand, I’m convinced that one of the reasons I got through our nine Alzheimer’s years, and to the very end was able to help and assist her, was that I had certain “crutches” that aided me.

One was getting away occasionally from the Alzheimer’s world. Golf, surrounded by beautiful nature (trees, greenery, lakes, birds, squirrels, geese) and with some friends, and being able to think for a while mainly of such insignificant problems as how to get out of a deep sand trap or make a twisting putt, was an especially welcome diversion. And Nance could always reach me by cell phone if necessary.

Besides the golf respite, three other aides helped prevent caregiver burnout. The first was taking a short nap every day. The second was writing essays and reviews. Since 2008, I had been writing them (in recent years about three a month) for various websites. During Nance’s Alzheimer’s years I learned to write them while being next to her, and she usually proofed the essays or had me read them to her before I sent them out. I found writing therapeutic. The third aid that helped me was having what I considered a proper and focused view of my Alzheimer’s responsibilities.

Lessons Learned as an Alzheimers Caregiver

2015, Oldest Son Tom’s daughter, Alexandra, Tom, Nancy sitting at a local park

Nevertheless, although I considered golf an aid to prevent burnout, I now—after an all-day stay at the local emergency room a few days after her fall confirmed a small break in Nance’s left clavicle—decided no more golf for me unless Nance had company. Our daughter Jenny was already often coming one of the days during the week while I was gone, and she and Nance often enjoyed sitting in our backyard chatting, sipping tea, and feeding squirrels, some of whom were tame enough to take peanuts from their hands. In addition, one of Nance’s friends now volunteered to come and sit with Nance from time to time if I wished to golf. Nance liked this friend and I was able to persuade her that this friend would come over sometimes not to “sit” with her, but just to visit.

Because of this friend and Jenny—and because colder weather would soon force an end to our golf season—I was able for the next two months to get out for a little while with my golf friends. But I still phoned during that time to make sure Nance was doing okay.

Another change resulting from the broken clavicle was that we obtained a hospital bed and put it in the living room so that Nance would not have to ascend our stairs, while holding on to its left-sided support railing. In this new bed she generally slept well, and often long into the following morning. Usually before saying goodnight to her, I would turn on some music that she liked, for example Willie Nelson ballads or soothing classical selections.

But one major problem did arise: Despite barriers to prevent it, Nance sometimes got up at night. In an 8 November email, I described one of those nights to our three children:

I got up around 3 AM and noticed a light on downstairs, so I came down to check it out. I usually kind of seal Nan in bed by putting pillows and cushions around her bed in case she somehow falls out even though there are guardrails on both sides along the top half of the bed. But she was not in bed and the pillows had been taken down. I looked all around, upstairs and downstairs, and she was nowhere. But I noticed that the side door to the garage was open a bit, so I went out there.

There she was sitting on a box filled with papers that I had set down along the inside wall of the garage. The car was close to the side, so she was kind of wedged in between the car and side wall. It was a bit cold and I have no idea how long she had been sitting there. But she appeared unhurt, just a bit cold. How or why she was sitting there she did not know.

Soon thereafter, son Dan suggested I buy a bed alarm, which I immediately ordered. After it arrived, I placed it on her bed, and for the next two months it rang and woke me during the night whenever she tried to climb out of it, which she often did, probably averaging twice a night.

Sometimes, she simply said she needed to use the bathroom—she had been having incontinence problems for almost a year. But helping her into our first-floor bathroom was relatively easy. But at other times, her wishes were more complex. Often she thought she had to go somewhere, like back to her home in Indiana—in recent years she had often asked me if her parents (who died decades earlier) were still alive. Or she would tell me she had to go back to her husband, Wally. When I told her I was her husband Wally, she would sometimes say, “No you’re not.”

Despairing how to best handle these nighttime happenings, I turned to the Internet, as I often had done before, and found this good advice: Don’t argue with the Alzheimer’s person, try to distract them, channel their mind in a different direction. Heeding this good counsel, in future nights, when she insisted that she needed to go somewhere, I usually responded, “okay, but let’s wait until it gets light and not so cold.” She usually agreed and went back to bed.

In addition to Nance’s nighttime confusions, we had a slew of medical workers and therapists come to our house during the daytime in October and November. This was thanks to a physician’s assistant who had ordered such help so that Nance could recover better from her clavicle injury.

Nance’s physical therapist came twice a week, worked with her, and gave us exercises to do. She provided guidance for how Nance could sit properly in her recliner—in mid-October we bought a new one that was easier for her to get in and out of. But because of her Alzheimer’s, she often forgot what her therapist had said and napped with her head on the arm of the chair. I was often torn between trying to help her follow the guidance she had been given and a desire to quit nagging her Alzheimer’s—afflicted mind.

But with me next to her in her new recliner, we also had some good times. While I often read or wrote and she did word searches, we listened to music—we both liked Willie Nelson, John Denver, Joan Baez, Kris Kristofferson, and some classical melodies, and she also liked Elvis Presley. Or we would look at old family photos that Amazon Prime had made available on our TV. Occasionally, Nance would also watch (and I half-watch) an animal or nature show, or a rerun of Cheers or I Love Lucy.

In December 2021, our oldest son and his daughter Alexandra (now 18, our oldest grandchild and the first one Nance had made a quilt for after her birth) flew up from Florida to visit us for a few days. As usual, but with diminishing energy, Nance was happy to see them.

We had a relatively quiet Christmas with none of our children or grandchildren able to visit us. But daughter Jenny and granddaughter Amanda did come over late on January 1, 2022, mainly to celebrate Nance’s 83rd birthday the next day.

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Unfortunately, it was shortly before they got here that Nance fell and broke her right femur. She was unable to get up, and we called an ambulance, which took her to the local ER (at St. Joseph’s Hospital). A long night of x-rays and other tests followed, and the next day Nance was moved to a nice hospital room. She remained there until late on 6 January, and I tried to spend as much time as possible with her. Daughter Jenny regularly traveled down from her home 25 miles away to relieve me for at least several hours a day.

On 5 January, while I was resting at home, Jenny texted me from the hospital that Nance said the “nurses were torturing her and asked for you. She said ‘Where’s Wally? He’ll make them stop.’” Actually, the nurses were just trying to do their job, maybe changing one of her bandages or moving her about to do so, but it made me happy to think that Nance still looked to me for help and protection because I always wanted her to think I’d always be there for her.

Late on 6 January, an ambulance transported Nance to a nearby rehabilitation center. I had checked it out beforehand, and the lady in charge of admissions guaranteed (and kept her word) that Nance could have a nice single room—most of the rooms were double occupancy with two TVs blaring at the same time. Yet, despite the nice room and good care, I had my fears that the rehabilitation of her leg was not going to be the main problem.

The following night (a Friday) I wrote to her neurologist Dr. Dobson:

“Before her 1 January fall, she [Nancy] was down to about 95 pounds . . . Since Jan 1, she has eaten very little despite my best efforts, and I'm afraid she has lost more weight. She has been at Promedica [the rehab facility] now just one day, and she spends a fair amount of time staring at the ceiling and hallucinating. The two physical therapy people that came today were nice, but all they could do was get her to sit on the side of the bed. They will not renew therapy until Monday [actually Monday they were not able to come]. My big fear is that Nancy will die while still at Promedica. My preference and hers is that she die at home with Hospice care.”

I then asked him if he could recommend home Hospice care, and he did so. Monday I received a call from Grace Hospice of Ann Arbor, and that began the process by which we were able to have Nance transferred to our home on the following Thursday (the 13th). By then son Dan had flown in from Colorado, and shared with sister Jenny visiting their mom at Promedica while I took a break. He also helped me transfer Nance from Promedica to the home where we’d lived for over four decades. There we’d moved her bed from the living room into our warmer TV and book room, where Nance would spend the whole of her remaining month.

Yet, before Nance could be transported home one last time, she gave us another scare. Early in the evening of 10 January, medical staff at Promedica were alarmed at her EKG reading, and had her transported back to St. Joseph’s ER, where she was tested for a blood clot. Because of that test and others (her oxygen level was too low, her pulse too rapid), Nance remained there until well after midnight when she was finally transported back to Promedica. Seeing her undergo all this trauma and her exhaustion from it, I was afraid she would never come home again.

But, of course, she did, and would be here for her final month. It went by quickly with Grace Hospice providing needed supplies, including medicines, and a nurse and an aide, each coming twice a week. With a broken femur, Nance could no longer stand, and she ate less and less, hardly ever exercised (despite my sporadic urging), and slept more and more. But now, at least, there was no getting up wanting to leave in the middle of the night.

When Nance was awake—now almost always in her bed—we continued listening to music, looking at old family photos, and watching nature shows and comic reruns. She especially enjoyed seeing baby animals. She also appeared calmer and less agitated than she had been when she sometimes wanted to leave our house in the middle of the night.

The last conversation Nance and I had was several days before her death. I forget exactly what we had first said to each other, but it might have been after I was trying to help her from the nearby portable commode to her bed. She had the habit of holding onto the commode rails when I tried to lift her from it to lay her on the bed. I might irritably have said, “Nance, don’t hold on to the rails, it makes it harder for me to get you into bed.” As usual, I might have soon felt bad about my impatience. But whatever prompted me, I then said to her, “Honey, you know I love you.” Then, I clearly recall, she replied, “I love you more.”

Now that she is gone, I am so happy that we had this final exchange. It meant that we both, despite all our faults and shortcomings over 58 years of marriage and nine years of an Alzheimer’s journey together, continued to love each other deeply to the very end. Around the same time, Nance also expressed love for son Tom, who had called from Florida, and to daughter Jenny on one of her visits.

After these exchanges the end came quickly. In the few days left of her life, she vomited up some food and drink I had gotten her to take, and would no longer swallow or sip liquid through a straw. Thinking the end was probably near, I texted our sons, and they both arrived at the Detroit airport on Friday evening (11 February), where Jenny picked them up, and all three headed for her bedside.

By then I had arranged with Grace Hospice for a nurse to come each day, and she helped guide us through the last two days. For the last several weeks Nance had been taking a few Tramadol (a mild opioid) a day along with a few Tylenol to ease her leg and back pains—she had also developed a bed sore that had to be treated. Now the nurse instructed us on how to administer small doses of morphine if Nance’s pain became worse or if her breathing became more labored, which on the last day it did.

Lessons Learned as an Alzheimers Caregiver

July 2021, Nancy in Bed with Walt, Standing are Son Dan and his 2 sons (masked because of Covid)

After the boys arrived, we do not know if Nance knew they and Jenny were here or not—we have read that even though dying patients cannot speak they can still sometimes hear. From time to time, I and all three of our children told Nance that we loved her, and we moistened her unspeaking lips with spongy sticks provided by Hospice and kissed her forehead or cheek. We also worked out a schedule so that someone would be with her in the room all night. During the second night (actually in the early morning hours of Sunday, 13 February), Dan woke me and told me he thought “mom” had died. She had.

The remainder of Sunday our three children and I talked a lot about Nance and how happy we were that she apparently suffered little in her final days. We also realized how lucky we were to have her in our lives for so long.

And perhaps in an odd way, in those difficult Alzheimer’s years Nance gave me an opportunity to be a better human being. If Dorothy Day is correct, and I think she is, that “the only important thing is love, and . . . to keep on loving, and showing that love, and expressing that love, over and over, whether we feel it or not . . . to be oblivious of insult, or hurt, or injury,” then my nine years as a caregiver were perhaps in one sense my best ever. Not “best” in the sense of happiest, but in working harder than ever to practice that “hard, hard doctrine” of love. I was far from perfect, but I never tried so hard. 

In that avoiding self-pity was also one of my aids for completing the caregiver journey, I tried to remember how much luckier I was than all those people whose lives were cut short much earlier than Nance’s. This occurred, for example to the spouses of two of my three siblings. Being a historian, I also thought of individuals like Chekhov, who died at 44, or John Kennedy at 46, or Martin Luther King, Jr. who didn’t even reach 40. At present day, there are all the victims of racial hatred like Ahmaud Arbery, who was killed so young. And then there all the unfortunate people in other parts of the world like Afghanistan, many African countries, and now Ukraine who suffered or are now suffering from oppression, hunger, or war. Globally, there are also the covid-stricken millions who died at younger ages than did Nance.

2018 Our 6 grandchildren in our Living Room (Left to R = Andrew, Alexandra, Jonny, Mikey, Erik, Amanda)

2018 Our 6 grandchildren in our Living Room (Left to R = Andrew, Alexandra, Jonny, Mikey, Erik, Amanda)

Yet, despite rejecting self-pity and realizing the innumerable blessings I have received, when I look back at some of our younger, even middle-aged, pictures together, I can’t help recall the ending of one of Yeats’ poems—“Oh that I were young again / And held her in my arms.” And by her, I mean really her, not some disembodied spirit, but Nance’s complete presence with all her radiant physical and moral appeal. 

When I hear some of the music we used to listen to together, I think of a poem by Conrad Aiken, “Music I Heard.”

Music I heard with you was more than music,
And bread I broke with you was more than bread;
Now that I am without you, all is desolate;
All that was once so beautiful is dead.

Your hands once touched this table and this silver,
And I have seen your fingers hold this glass.
These things do not remember you, beloved,
And yet your touch upon them will not pass.

For it was in my heart that you moved among them,
And blessed them with your hands and with your eyes;
And in my heart they will remember always,
—They knew you once, O beautiful and wise.

There’s a thin line here between nostalgia and self-pity, and about a year ago I ended an essay with these lines, “There’s no doubt we have to keep it [nostalgia] in check—there’s too many real-life problems like racial injustice and climate change that require our attention for us to spend most of our remaining years in nostalgia land. But we all need some rest, some breaks in our daily hectic lives, some moments to recharge our spirits. Pausing briefly to recall wonderful times, those that seem to transcend time . . . can be just such moments.”

walter moss

Walter Moss

This summer we (I, our children and grandchildren, some of Nancy’s co-workers and friends over her many years) will come together to remember her life, all its wonderful moments. By then our cold Michigan weather will be over and all trees and flowers displaying their glories. There will be no wallowing in self-pity. The ceremony may be a bit nostalgic, but it will be celebratory. That’s what Nance would have wanted.

Walter G. Moss

Nancy Moss Memorial Site