Dec 26, 2012

Can Alzheimer's Caregiving Get Easier?

The effort it takes to foster contentedness in my mother, who lives in the late middle stages of Alzheimer’s Disease – that seems easier to me. Easier than last month. Easier than last year. What’s changed?

By Pamela R. Kelley

What do you mean, easier?

Does it get easier to care for someone suffering from Alzheimer's disease?

The work, the labor, the volume of chores and tasks that fill the minutes from before first light until long after sunset – this part doesn’t diminish, it grows.

But, the effort it takes to foster contentedness in my mother, who lives in the late middle stages of Alzheimer’s Disease – that seems easier to me. Easier than last month. Easier than last year. What’s changed? Just me.

Care giving remains the most difficult occupation I’ve undertaken in a peripatetic life.

Reporter. Lobbyist. Lawyer. Professor. This work, caregiving, is hard work in a way that none of that ever was. Its rewards aren’t recognizable to most; they aren’t easily accessible. This work has set me at odds with those who love me, who see a tinge of madness in the fervor with which I’ve thrown myself into caring for my mother through her terminal disease.

Audrey has been living in my home in Alaska for a year. She came here after spending eight months in my brother’s home. Before that, my widowed mother lived alone in a lovely retirement condo. She has traveled great distances – geographically, neurologically, behaviorally, emotionally.

When Mom moved here, she noted all the differences with disapproval.
"It’s not like that in Cleveland"

became a constant refrain in the household soundtrack.

At the same time, she liked the ocean, the mountains, the clean air and water. She did not like the dark and the cold. She liked to hear my stories of Alaska, my secret history of our romance, our success, our happiness. Creative license was taken.

As the months passed, the ways Audrey adapted to a new world amazed me.

Nothing easy there. She had to learn a new house, new people, new animals, new town, new church, new landscape, new landmarks. The only way I could imagine her adapting to these changes was through experience. I thought engaging as many of her sensory systems in adapting to a relocation made sense. I wasn’t sure my mother could adapt, and I was confident that if she could not then I could return with her to Cleveland to live in the care of her favorite religious order.

How Aud expressed her discomfort with the disruption changed as her capacity shifted. No longer is there a comparison, Anchorage to Cleveland. Instead, “everything’s different” replaced “that’s not how we do it in Cleveland.”

Anything termed “different” signals to me confusion or unhappiness. I learned how to soothe with simple story telling, with visual aids in photographs or transported treasures. As our different way of life became familiar through repetition, through reassurance, through regularity and routine, my mother adapted to the move.

Transcontinental relocation shouldn’t appear high on anyone’s list of options in caring for a loved one with Alzheimer’s disease. Yet as all of us who provide care can attest, there aren’t lots of easy options. One local psychologist reminds me that choosing responsibly among poor options is the heavy burden of adulthood. Choosing a major relocation could have been massively, irrevocably destabilizing for my mother. In my mind, that was the biggest risk to factor.

One year later, I shake my head in amazement that what we’re doing is working so well for Mom.

I’m convinced that if I had not devoted myself to her care, to her ease, this month would not be a happy commemoration. I’m proud of her fortitude. She’s gotten through a very difficult transition and incorporated an entire cast of new characters in her life.

She misses her son and her daughter “back home”. We talk about home every day. We talk and talk, me trying to follow a disjointed thread while she tries to line up the jumbled thoughts. I’ve learned to be still, to wait.

Audrey contributes to our household in meaningful ways, and we’re better for her presence.

I wouldn’t want to offend any care giver that doesn’t feel like any part of the job has gotten easier over time. I understand that sentiment too. There are days when nothing is easy, when everything takes effort. There are days upon days upon days like that. I’m brittle then, and can imagine being assertively irritated at someone suggesting to me that it gets easier.

Yet giving care is easier for me this February than last because of the intimate knowledge gained after one solid year of quiet service – through observation, through attention, through contemplation, through experimentation, through research.

I’ve monitored the changes in myself as cautiously as I’ve observed changes in Audrey. I’ve redefined important relationships to give as much attention as possible to my mother. These efforts have born fruit. I feel less desperate.

Maybe that’s all I mean when I suggest that it’s gotten easier. I feel less desperate.

I dwell in the present, and spend little time imagining changes in store. I educate myself about this disease. I hone my skill in assessing Audrey’s moods and behavior and health. I put all of the pieces together in a way that works, day after day.

The less desperate I feel, the more my imagination flickers with ideas about how to foster contentedness in Audrey. As managing contentment becomes my organizing principle, more contentment occurs in the here and now. We laugh more. We spend time doing things that are pleasing to us. We rebound more quickly from the difficult times.

Ironically as my mom’s ability to think diminishes, my ability to think purposefully about providing her with care grows.

I give better care as a product of my capacity to think, when what I’m thinking about is managing for contentment. I’m learning more as we go.

I’m having a happy anniversary.

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