Oct 24, 2011

Managing Alzheimer's Living Changes

We’re still adjusting. And we’re still living our lives together -- actively, positively and lovingly.

By Pamela R Kelly
Alzheimer's Reading Room

Managing Alzheimer's Living Changes
Every morning I drive to my mother’s new home, a studio apartment on the floor of an assisted living facility specially geared toward those with memory loss.

There I spend many hours by her side.

Her relocation to M** wasn’t my first choice. I’d wanted her to stay in my home, by my side, for many more years. But what I wanted and what was possible – those things were at odds.

And so, once again, I accepted that I needed to imagine my life in a way that allowed me to support my mother to the greatest degree our circumstances allowed.

I wanted to continue to give my mom the sense of security and safety that my love affords to her.

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Whenever I write about my experiences as a caregiving daughter, I start from the premise that I’m just like every other daughter out there who stands side-by-side with an afflicted parent.

I think most of us must wrestle with similar stresses, similar heartaches, similar challenges.

Adjusting to the idea and reality of assisted living has proven to be one of the most difficult things I’ve done on this path.

There isn’t much guidance available to us as we make these changes. We have to trust ourselves. We have to trust that love guides us toward the right path. We have to rely on the hope that our intimate knowledge of our loved ones, impaired as they may be by disease, will be a compassionate guide. We have to trust that our desire to do right by the ones we love will help us find the way to ground both of us in a new reality.

My mother and I are two months into this new arrangement. Two months represents a fair amount of time to allow for meaningful reflection. In truth, I’m a little bit shocked at how smooth the transition has developed to this point. Maybe it’s just that I’d expected it to go so badly.

Readers should understand that we live in Anchorage, Alaska – where there are a grand total of three facilities that have any form of specialized support for those with memory impairment due to Alzheimer’s or other neurological diseases.

For years, I’ve collected information and impressions to rank those three places. I put my mother on waiting lists at all of them. I did so knowing that at one the list promised a years long wait, the second would “cherry pick” only the most pliant of residents, and the third was likely to leave her alone more than would be good for her. My mom remains on the wait list at the first facility. She was soundly rejected by the second. She now lives at the third.

Once we took possession of the place, we implemented a “go slow” approach. We worked to our strengths.

Since Audrey liked to go out to eat, I started a routine in which we began having supper at the restaurant-style dining room on the premises. After supper, we would cross the street to the local Catholic church where we attended an evening Mass before driving home. We did this for four weeks. In that time, the dining room staff came to know Audrey and her tastes. I spoke to the parish priests to enlist their aid in welcoming a new parishioner. Mom was not hostile to these places. She associated it with a happy routine.

I also spent almost all of my respite time preparing my mother’s apartment for her comfort and ease. I learned the names and styles of the staff caregivers. I tried to imagine the process that would unfold on moving day. I created a kind of narrative that would put the transition into a positive and understandable context. I sought the help of all who would willingly provide it.

I worried most that my mother’s condition would deteriorate rapidly with the lack of my constant presence, without someone always at hand to prompt and cajole and smile and hug. Who would she ask, “What I am supposed to do now?”

Turns out – she would continue to ask me. She would continue to ask Lori, the woman who served her so well as a supplemental caregiver while I claimed respite time. She would continue to ask Sue, our dear friend whom Audrey recognizes as family. And she would start to ask the caregiving staff member assigned to her every shift, those whose faces and manners have become familiar to her over the course of the last two months.

I haven’t observed the deterioration I expected and feared.

When transition planning started, I read whatever I could get my hands on to prepare myself for this change. There was a common refrain in the popular literature, something like “you’ll be able to be a daughter again instead of a caregiver.” I don’t think that’s true, frankly.

I continue to be Audrey’s primary caregiver, motivated by a daughter’s devotion.

I arrive first thing in the morning, get the report on whether my mother has taken her pills or not. Since it’s usually “not”, I make sure that happens without upset.

If it’s a day when a shower should be taken, I see to that. Only once in two months has my mother accepted assistance from another for showering.

We make coffee in her tiny kitchenette. She sets the table; I serve. We wash the dishes. We look at photo albums. We might color or work a puzzle or take a walk or play a game with dominoes. We have lunch together in the dining room. We brush our teeth. We find our favorite songs on YouTube, and sing along with Mitch.

Some days I leave when Lori arrives. Lori’s role now is to accompany my mom to scheduled activities and help her participate. Some days I stay until the afternoon shift-change is complete, and the new staff caregiver has stopped in to say hello to Audrey. I can usually depart without much fuss after explaining that I need to go home to make supper for my husband. That’s my cover story at least.

Today we’re celebrating Oktoberfest, with German foods on the evening menu and a polka band in concert for the residents. And afterwards, we might watch a few innings of the World Series. We’re still taking it one day at a time.

We’re still adjusting. And we’re still living our lives together -- actively, positively and lovingly.

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 Bob DeMarco, the Alzheimer's Reading Room