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Personal Reflections on Being a Caregiver

Author: Helen Dennis, Specialist on Aging

Dear Readers:

This week I would like to share an experience I had as the closing speaker at a 48-hour caregivers retreat.  It was sponsored by the Los Angeles Caregivers Resource Center and held at the Mary & Joseph Retreat Center in Rancho Palos Verdes.

The purpose was to give caregivers the opportunity to reconnect with themselves since many feel their identity disappear as they care for a loved one, noted Shawn Herz, Director of Program Development for the Caregivers Resource Center and the facilitator of the retreat.

The theme for the retreat was to rediscover, replenish and reconnect. The program was rich – ranging from one-to-one counseling, supportive group meetings and meditation, to walks, massages, manicures and pedicures (trims and buffs for men).

About 22 attended; two were men. Their caregiving responsibilities are demanding and at times overwhelming.  In most cases, these individuals are caring for a mate, an aging parent or a grandparent or two.  The care recipients are suffering from Alzheimer’s disease, stroke, Parkinson’s disease and, in one case, a gunshot wound.

Many have had the caregiving role for years and were stressed, exhausted and overwhelmed prior to the retreat. They left, however, feeling peaceful, rested, connected, knowing they are not alone and more aware of what they must do to take care of themselves.

I was asked to tell my story, which was no more poignant than anyone else’s.

My husband, Lloyd Dennis, was diagnosed with non-Hodgkin’s lymphoma in 1998.  After many different chemotherapy treatments, a stem-cell transplant, hip replacement and lots of side effects, he died in 2003.

Here is part of what I shared with the group:

  • My husband and I visualized our life like a pyramid and typically tried to do everything — in our work, with our family and friends and in our community. We lived life broadly and deeply, like the widest part of a pyramid.  Then, when energy was in short supply, we realized that we had to prioritize what was most important. We could only cover the peak of the triangle, which for us was the most important part, and only about one-quarter of the way down. That was a reality.
  • We had to establish a new normal and stop thinking about what we did before cancer.   A new standard was being formed and often it changed from day to day.  In fact, each day had its own new normal.
  • Family and friends were always important.  Now they were even more so.  Updates by e-mail, frequent visits, dinners with family and friends and organizing visits were part of the drill.
  • I helped create a fun event whenever possible.  For example, when Lloyd was losing weight due to the effects of chemotherapy, we served high-calorie Dove ice cream bars while watching political television shows with friends.  We also went out for tea and goodies after chemotherapy treatments.  I often brought a gourmet (light) dinner with linens, crystal and china to the USC Norris Comprehensive Cancer Center for one of the many stays.
  • Staying healthy, rested and strong was a challenge.  My husband’s doctor told me (not urged me) to go out at least one to two hours a day and have coffee with a friend or walk at the beach.  Yoga, running and staying involved with my work to the extent possible helped.

When someone mentioned to me that I had been a caregiver for years, I was shocked.  I never identified with the term.  It disturbed me because the term “caregiver” suggests one person gives and the other receives.  It ignores the reciprocal aspect of a relationship and implies that giving and receiving are mutually exclusive.  In my case, we both gave and both received; we had a relationship.

At some very hard moments towards the end, I struggled with how to manage my thoughts. I found it useful to write a list about what was working and what was not.  I recently found that list dated July 12, 2003.  Here are the negatives I wrote:  My husband’s decline, the wear and tear on him, his discomfort, dependence and weakness.  The positives:  my children, my grandson of nine months, family, friends, my health, having an outside caregiver – and his response to lymphoma.

I was shocked to read the last item.  I guess even in the darkest moments, I was grateful to have five years of living well and fully with my husband – despite the downs.

Today, I live without regrets and cherish the memories.

If you are a caregiver and looking for support, information or a getaway retreat, contact the Los Angeles Caregiver Resource Center at 800-540-4442 or go to http://lacrc.usc.edu.

Thank you to the center and to you, the readers, for the opportunity to share part of my story. Although not easy, reflecting on the past can help put some part of life in order.

Copyright 2011 Helen Dennis. All rights reserved.

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