Jan 27, 2011

It Takes a Community to Care

In many ways, things have gotten easier. I’ve learned how to manage difficult behaviors, how to keep our mother contented, how to involve her in a meaningful life, how to supervise without insulting her dignity. I’ve learned how to construct a care giving community without any local family help. Since I’m not Wonder Woman, I rely on others to assist because that keeps me strong enough to do what I do....

By Pamela R. Kelley
Alzheimer's Reading Room

As someone who engaged in long distance caregiving across thousands of miles over four years, I developed an early appreciation of the importance of a caregiving community. I knew my mother needed many others to keep her safe and secure and contented as dementia took its hold on her.

Even with my generous leave privileges as a university professor, I couldn’t keep a close enough watch over my mother’s well being in Ohio while living my life in Alaska. Yet I felt that I participated actively and fully in safeguarding my mother’s affairs despite the impediment those thousands of miles imposed. This was possible because I had a brother and a sister who resided nearby our mother’s home.

Relatives, friends and a religious community formed the caregiving community in which my mother resided. Each of my siblings performed thousands of tasks in support of our mother’s well being. Held together with string and rubber bands, we three “kids” managed to form the nucleus of care.

Now I am the prematurely retired daughter who gives a home and loving care to a mother who is mired more deeply in the muck of Alzheimer’s.

The value of our caregiving community is immeasurable. I’ve had to learn how to ask for help. It’s essential if I’m to meet my goal of providing residential care full time for my mother in this late middle stage of her disease.

Next month, we’ll celebrate the one-year anniversary of the day when Audrey moved into our home.

In many ways, things have gotten easier. I’ve learned how to manage difficult behaviors, how to keep our mother contented, how to involve her in a meaningful life, how to supervise without insulting her dignity. I’ve learned how to construct a care giving community without any local family help. Since I’m not Wonder Woman, I rely on others to assist because that keeps me strong enough to do what I do.

Our community consists of dozens of people: My husband, my siblings, a devoted friend, three well-trained respite workers, the staff at an adult day program, a church family, a primary care nurse practitioner, a care coordinator. To some that may seem a bare bones operation, to others it may sound luxurious. All I know it that it’s what we have on hand to do this very difficult thing, taking care of our loved one afflicted with this disease. I’ll use everything that’s available.

Every person in our care community serves, and service implies sacrifice. My husband’s world has changed utterly. He now has the secondary claim on my time after enjoying thirty years of primacy. The doors of his home are open wider as the community grows. He sacrifices the ease of living that was once our norm. His willingness to provide a home provides a foundation for all of the rest of our community.

There’s the friend who rearranged her life so that she could become part of our routine. This generous person comes to our home every evening on her way home from difficult work to check on us, to take our frisky Labrador on a long walk for exercise, to share a meal or a drink, to talk with Audrey despite the fact that Audrey often behaves badly toward her. This same friend will take a respite shift if asked, and volunteers often.

Three days every week, a respite caregiver spends four or five hours with my mother. These two women have a daunting task some days, dealing with antagonistic suspicion from my sweet mother. It must be difficult to put up with the mean comments without the filter that love provides to me. When Audrey is saying mean things to me, I think about how thoroughly she loved and nurtured me in my youth. I think of the confidence she instilled in me despite her own insecurities. What do our care workers think about?

Three other days of the week, Mom attends an adult day program for dementia sufferers. I relax when Mom is with them, knowing their dedication to taking care of us. The thirty minutes it takes me to drive my mother there is full of resistance from Audrey, and the thirty minute drive home is full of the lively chat of a satisfied member who was made to feel useful and included. That’s a roller coaster I can ride with her.

On the seventh day, Mom and I attend Mass where our parish community affords a different sort of support. Mom recites the prayers, receives Communion, says her rosary. I think she relaxes too, knowing exactly what’s going to happen next as the Catholic ritual unfolds. I go through the motions beside her while I listen to the Mass and wonder about spiritual matters. My mother notices people in the adjacent pews and recognizes some: there’s the nice family with five children who are well behaved, an elderly couple who sit through the standing and kneeling parts of the service. Everything is ripe to be commented upon when the service is over and we’re driving home or out to lunch. She is happy most Sundays, even if it’s bitter cold outside.

My siblings are learning how to provide care and support across the miles. Distance requires adaption of old methods. Phone calls, care packages from home, memory books and photographs – these help tremendously. Even better are the weeks each visit so that I can have a vacation of sorts every five or six months – certainly a sacrifice of most precious time away from their own busy lives.

Unfortunately, it falls to me to educate my bother and sister about how to help me help our mother. One sign of the burdens of caregiving I notice is my impatience with my siblings when I have to instruct them as to what we need from them. Normally, I’m not impatient. So when my impatience surfaces and I feel irritable, I pay attention. It’s my stress leaking out. I take it as a matter of faith that they understand and forgive my irritability.

We’re all in this together. We’re all giving this dear mother of mine a positive and loving environment. I think of this as palliative care, and meditate often on the privilege I have in serving. Through it all, I keep in mind the sacrifices everyone else makes and allow my heart to fill with gratitude. I couldn’t do it without our caregiving community.

I know the heartache involved when trying to be a responsible and loving daughter from afar. I know the added heartache married to exhaustion that results when a loving and responsible daughter moves into the Front Row of full time caregiving. I’m on a first name basis with anxiety. And I’m remarkably content. For that, I credit this community of care and I wonder:
How do others construct their communities? What do they look like? And do they have any great ideas I can borrow? For that, I turn to Bob DeMarco and The Alzheimer’s Reading Room. I think of the Reading Room as something miraculous within our community. I suspect if you’re reading this, you do too.

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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Alzheimer's Disease -- Advice and Insight

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