Bob DeMarco Alzheimer's Reading Room

Thursday, July 22, 2010

Alzheimer's Caregiver Learning From Respite


I knew respite was important. Intellectually, I understood its value and necessity. But, being the stubborn dunce, I had to experience it to have my preconceived notions about how to do respite adjusted to reality.....

By Pamela R. Kelley
Alzheimer's Reading Room

There are times when I can be a dunce. This realization strikes me frequently as I settle into my role this year as a full-time Alzheimer's caregiver to my mother. Realizing this humbles me, and galvanizes me simultaneously.


After four months of providing care to my mother who is in the moderate stage of Alzheimer’s Disease, I was due for sustained respite break. I heard this from my husband, from my sister, and from my friends. In my opinion, I was managing quite well. But I was willing to take some time off, and I was grateful that my brother was willing to travel to Alaska to spend a week with my mother. I didn’t feel like I was at the end of my rope. But I recognized that my patience was growing shorter. Time off seemed sensible.

Here’s one thing I learned – approaching respite can be stressful. Without realizing it, I had too many preconceived notions about how the week would unfold. I thought my brother would arrive and observe the patterns and routines I’d established with our mother, and then implement them without variation so there was a minimum of disruption for Mom. I thought that after modeling my ways for 36-hours, he would be following my suggestions, mimicking my methods, and I would be able to go away without hesitation. I imagined that after a few days retreat in the mountains, I would return and find my brother as hands-on in caregiving as I am. I couldn’t have been more wrong.

Here was my fundamental error – I did not believe that my mother would react to a very different caregiver style without negative consequences. I assumed that upon my return I would have more work than ever managing her challenging behaviors, which I assumed would be aggravated by the disruption in our routine. I failed to consider that my brother’s love would act as a balm that would sustain our mother through the disruption. I underestimated my mother and my brother. Unawares, I was caught in my own loop of fatalistic thinking.

In spite of my anxiety over leaving my mother in my brother’s hands, I left. I returned after three days spent sleeping, reading, walking in the mountains, and just being with my husband in the quiet. I felt wholly renewed and restored. My brother remained with us for two more days, but he did not take the lead in caregiving when I was in the same household. My mother could not manage to see him in that primary role. He continued to make the effort in his own way. After my break, I was more relaxed and more accepting of his methods and his “hands-off” style than before I left. The variations didn’t get under my skin as they had at first.

While I was away, Mom experienced periods when she didn’t know my brother was her son. One night she refused to change into her pajamas and go to bed, what with a strange man in the house -- even if he was a very nice man. In my absence, she ate white bread and few vegetables and didn’t get as much exercise as I try to afford her. She spent more time alone, or in front of the television, than is our pattern.

Yet here was the lesson: She was fine. I could see her heightened confusion when I returned. I could see initially that she was shadowing me more closely than before. I could see it in her eyes. And I could also see that she returned to our orderly routine with comfort and relish. Importantly, I understood that the price I paid for those days off was not as steep as I’d expected. Realizing that fact was a massive relief. Now I understand that my mother can be left in another’s care. I understand that the person doesn’t have to be one of her three children, that she can accept care even from strange men so long as they’re “nice”. There really wasn’t much repair work needed; my predictions were wrong.

As a result, I believe I’ll take more one or two-day breaks in the months and years to come. Long term, this can only improve the prospects that I will be able to care for my mother for as long as is necessary without depleting myself or harming the relationships I treasure.

I knew respite was important. Intellectually, I understood its value and necessity. But, being the stubborn dunce, I had to experience it to have my preconceived notions about how to do respite adjusted to reality. I’m glad for the humbling experience, the time for relaxation and reflection that I had. It’s enabled me to imagine a wider variety of support in respite that I will accept in the period to come.

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

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Original content Pamela R. Kelley, the Alzheimer's Reading Room