Caring for a person with a debilitating illness is often challenging. It becomes all the more difficult when the person is in the throes of Alzheimer’s disease. Those affected can display mood swings, repeat words in a constant patter or show a complete lack of communication, have aggressive or docile behavior, and show recognition of loved ones or seem completely unaware. The anxieties and frustrations of the caregiver are well documented. There are significant factors, though, that can and do contribute to a positive and rewarding outcome in caring for a family member with Alzheimer’s disease:

• A close loving relationship before the onset of Alzheimer’s disease
• Mutual interests, e.g., music, dance, sports
• The caregiver has volunteered willingly rather than
  taking on the role because of family coercion/obligation
• There is a sincere desire to follow the “Golden Rule”

As a result, there can be great satisfaction in being with the family member with Alzheimer’s disease, regardless of the manifestations of the illness. This is exemplified in the following true story.

A Daughter’s Perspective

They say that Alzheimer’s is the cruelest disease, and that is so true. It robbed us of fourteen years of my mother’s delightful, joyous personality and her marvelous musicianship. She was a professional violinist, pianist, and composer. When I became a professional flutist, she and I worked together as colleagues. We forged a special connection and became great friends. I was privileged to have far more than the usual mother/daughter relationship. My mother first began to exhibit signs of Alzheimer’s disease at 79 and passed away at 93. The progression of her illness was slow during the first eight years. But then, she had two falls in quick succession, causing her to break a hip and fracture several vertebrae. The pain and surgery involved caused a sharp decline in her mental status and from then on, she needed round-the-clock care. 

My sister and I were determined to help our mother hang on to the world around her. We were fortunate in two respects. First, when it became obvious that her care was more than my stepfather could manage, we had the good luck to find an excellent live-in caregiver. Secondly, it was truly a blessing that my mother did not become belligerent, as is sometimes the case. If anything, she became even sweeter.

My mother also gradually became more childlike and at times it seemed she was one of my children. This role reversal often made me think of all my mother had done when I was seriously ill as a child. In the face of a rare ailment which doctors were uncertain how to treat, my mother used all her wisdom and creativity to keep me well. I viewed her illness from Alzheimer’s disease as my opportunity to give back to her all the care she had lavished on me.

To give the live-in caregiver time off to be with her family, I usually spent at least two days a week with my mother. I made it my personal challenge to do whatever I could to engage my mother, ease her misery, and make her situation as cheerful as possible. Each day, my goal was to treat her as I would want to be treated in that predicament. During the earlier stages, when my mother would have trouble remembering words, I was cautious about completing her sentences or correcting her, as I did not want to make her more painfully aware of her new shortcomings. Eventually, my mother lost the ability to say anything other than an occasional yes or no; the most I could hope for was a change of expression to tell me whether something had registered with her. It was a good day if I could get her to smile or laugh, and a great day if I could elicit a verbal response.

I found that the most important thing was to continue talking to my mother and asking questions of her as though everything was perfectly normal, because I never knew when she might suddenly say something that showed she had been paying attention despite her far-away expression. One day, when my mother had said nothing for several hours, some music we had performed hundreds of times came on the radio and I asked if she remembered it. She laughed, rolled her eyes, and said, “Well, of course I do.” I was overjoyed that she not only answered, but had not lost her sense of humor!

I found physical contact became increasingly important in maintaining a connection with my mother. When I would arrive for a visit, if I simply said “Hello” upon entering, often my mother would be staring elsewhere and not respond. But if I put my face right in front of hers, patted her cheek and said “Hi, Mother – I’m here,” she would look straight at me and beam as if a light had just been switched on. Sometimes, we would simply sit and hold hands. Her grip was enough to show me that this was just what she wanted.

Anything that involved the senses worked well in getting my mother’s attention. In addition to touching her often, I would give her a variety of things to feel, smell, or taste. She had been a good seamstress, so I gave her interesting materials to touch. When cooking, I gave her finger foods or a whiff of an herb. I brought in flowers from her garden for her to smell or hold. I also read aloud to her; familiar passages, in particular, would often get a reaction. And of course, I continued to play her favorite music until the very hour that she died.

My sister, an excellent pianist, would often play for our mother. Even if she didn’t say a word, we always knew whether our mother, a perfectionist like most professional musicians, had been favorably impressed. She would usually smile and nod her approval, but if my sister made the tiniest mistake, our mother would raise an eyebrow or give a little “Tsk, tsk.” It was her lifelong passion for music that stayed when other interests faded. No matter how unresponsive she might seem at times, listening to good music would always perk her up.

When a loved one has Alzheimer’s disease, the sad truth is that you know it’s only going to get worse. To not be dragged down by this, I tried to make the most of each day with my mother, and to focus on the positive by noting things she did that made me feel my efforts were effective. Of course, there were times when I dissolved into tears on the ride home after a visit with my mother, grieving while she was still alive for the wonderful person we were losing. There is no denying that it is a devastating disease and depressing for all concerned.

I once heard a person say about his father with Alzheimer’s disease, “There’s no point in visiting him - he doesn’t even know my name anymore.” This was heartbreaking to me; just because a person with Alzheimer’s can’t remember your name, it certainly doesn’t mean that they do not know you on a deeper level or need your presence and love. My mother did not say my name during her last years, but the knowing smile or touch that she would give me left no doubt in my mind that she knew I was her daughter, and made my efforts to nurture her one of the most gratifying things I have ever done. I will always remember one day when my mother was first beginning to have trouble with word retrieval. I was at her house when someone stopped by and my mother said, “I want you to meet Priscilla. She’s my…” Suddenly she trailed off and I realized she couldn’t think of the word “daughter.” But then she finished with, “She’s my best friend.” I could not have had a greater compliment.

Conclusion

As seen from the narrative, it is possible to create and maintain a satisfying role in the care of a loved one with Alzheimer’s disease. Indeed, the factors listed earlier as contributors to a positive caregiving experience resonate in the daughter’s narrative. For instance, the daughter describes how the special close relationship that she and her mother had in the past did not end with the onset of Alzheimer’s disease, but instead continued until her mother’s death. The daughter made use of their shared love of music in the past to elicit fond memories for her mother in the present. The daughter remembered the caring attention her mother provided during her childhood and now wanted to reciprocate; not because it was her duty, but simply because she wanted to. Her commentary is poignant and her conclusion is apt: she would treat her mother as she would want to be treated.

Priscilla Fritter Peterson is a retired professional musician who was a member of the Kennedy Center Opera House Orchestra for 28 years, 15 years as Principal Flutist; Ruth Brinn is a retired educator, author of children’s craft books, and currently volunteers as an activity facilitator at an assisted living facility; Marcia S. Marx, PhD and Jiska Cohen-Mansfield, PhD, who have received grants from NIH, the Alzheimer’s Association and other organizations and have conducted and published the results of their gerontological research over the past 25 years, are currently affiliated with Innovative Aging Research.

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