Oct 15, 2010

Reflections on the Alzheimer's Disease Caregivers Survey

Why am I comforted by the sure knowledge that I’m not alone?...
By Pamela R. Kelley
Alzheimer's Reading Room

·· Women surveyed were more likely to
consider "maintaining relationships with
family or friends" as a challenge compared
to men [47 percent versus 31 percent]

The lines above struck me. They appeared in the article that appeared here -- Alzheimer's Disease Caregivers Identify Memory Loss, Personal Safety and Confusion as Top Three Concerns Related to Progression of Their Loved One's Disease.

The editorial work of Bob DeMarco on The Alzheimer’s Reading Room continues to serve as an important touchstone in steadying my efforts as a caregiver.

So when Bob recommends a study, I read it. The selected finding was the only one I highlighted.

The finding that women were more likely to consider maintaining relationships with family or friends as a challenge compared to men coincides with my experience.

It prompted me to explore what it is about in maintaining family and friend relationships that challenges me while serving as my mother’s caregiver.

The topic isn’t unfamiliar, because I most particularly find this challenge getting the better of me. I have wonderful family and friends, and I draw most of what’s important from these relationships. And yet these are the ones with whom I am most irritable as I march through my chosen responsibility.

I suspect losing family and friends along the path of caregiving is inevitable. I’ve seen sharp contrasts between what I imagined others would contribute to a caring community and what others truly have available to contribute. Disappointment resides between those points. The challenge is in not allowing the disappointment to ripen to resentment, and in accepting the contributions for what they are – gifts of time offered freely and without coercion.

I’m not the only one. Nearly half of the women surveyed found maintaining relationships as a stressor. I want to maintain the affectionate community of friends and family I enjoy. I see that I don’t have time to give each of those friendships attention in the way I once could afford. That’s a loss, and I won’t willingly lose any one of them.

Yet, my mother requires more of my presence every day, and only the hours of paid respite care afford me the separation needed to attend to the thousands of details of my own life. Chores and errands and projects and appointments crowd out walks or lunches or drinks with friends. I feel guilty about not making the time. I feel angry at feeling guilty. Yep. That’s a stressor.

Now why women caregivers experience this stressor more as a challenge than men caregivers, as the survey suggests, I haven’t a clue. Maybe they’re not as emotionally attached to as many of other friends and family, and thus perceive less loss or potential loss. Maybe they’re more realistic about the bonds of friendship and family. Maybe men apply different standards than women.

I know that my friendships with men are suffering equally as my friendships with women. All of my friends are getting by with much less of me, and are almost uniformly dissatisfied with the version of me available when I’m splitting my attention between them and my mother – as on a phone call, or during a visit at our home.

In comparison to what I once provided, I appear unavailable. Though my heart may be moving apace with theirs, my thoughts are clearly diverted. So it seems at times that I’m not paying attention. I am less able to give the benefit of the doubt, to turn the page or the other cheek.

I look within our household, where my 80-year-old mother lives with me, my husband and my dog.

I doubt my husband would identify maintaining relationships with friends and family as something significantly challenged by family caregiving duties. He continues to spend leisure time canoeing and flying and floating around the Alaskan wilderness. It’s deer hunting in Prince William Sound this weekend. His hunting buddies haven’t experienced a loss in opportunity to hunt with my savvy outdoorsman. The products of his woodsmanship will feed our family well into 2011. These outdoor experiences renew his soul, and are his priority. Family caregiving has altered his lifestyle profoundly, yet the relationships that populate his world aren’t distressed.

Most of the women I know are more empathetic in friendship than most of the men. It becomes difficult to empathize with someone who is doing something so different from what once was. In my case, the professional legal educator was transformed into the caregiver.

Friendships built on years of common cultures, from law firms to academic departments, must now be sustained on intrinsic interest and affection. Certainly this can and does happen. But like so much else associated with caregiving, what sounds easy in principle becomes effortful in execution.

Friendly ties are much more fragile in my experience than the bonds of family. Family relationships that were strong to start remain strong, since they’re not built initially upon associational interests. These relationships are built on history, on shared stories, on endurance and experiences. These relationships are not easily disregarded, because we know they endure and adapt to our flaws and mistakes and oversights. To use an old fashioned phrasing, family abides. They have thus far, and with a leap of faith we trust in continued endurance.

Sometimes too, while giving care everything seems like work. Relationships included.

Relationships that once were graceful and natural and sustaining require more effort just when our capacity to muster more effort is at an ebb. At times, the path of benign neglect is chosen only because I’ve heard that I can’t do everything, and have to choose. Often, the path of least resistance is the one that requires less time and less effort.

It wasn’t news, that women caregivers find maintaining relationships with family and friends is an identified challenge. I seized on it out of solidarity. I’m apparently like 47% of the population that does what I do for my mother –
I’m bothered by how my caregiving responsibilities create impediments to maintaining the most important relationships in my life.

Why am I comforted by the sure knowledge that I’m not alone?

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.

The Alzheimer's Action Plan
300 Tips for Making Life Easier

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