I am one of a huge number of individuals caring for a loved one who is slowly being swallowed by a chronic, degenerative illness. Think Alzheimer's. Think Parkinson's. Think Muscular Sclerosis. Think terminal Cancer. All require ever increasing levels of care, usually over a period of years. The caregiver finds his or her life likewise swallowed, at first with schedules, doctor appointments, pills and therapies. As the disease progresses, the caregiver may be dealing with a partner who seldom sleeps, and falls repeatedly getting out of bed; a declining parent who can only express rage at his or her loved one, a spouse who must be catheterized routinely or has incontinence, eating problems, and more. And thorny ethical problems arise, such as when and how to insist their ill loved one give up driving, and when, or if, to put the loved one into a chronic care facility. Caregiving sucks out the caregiver's sense of self, along with the last vestiges of strength. We do our work alone, often with only our ill loved one for company.
A day retreat for caregivers last week sponsored by Duet Arizona, intended to break the isolation, gathered twenty six attendees, faces etched with stress and exhaustion.
We were welcomed with hot coffee, mountains of baked goods, fresh fruit, and soft music. At my table was a woman caring for her mother who has dementia and is increasingly nasty and uncooperative, and a man, caring for his wife, who was frightened that he had run two red lights in the past few weeks.
Two medical massage therapists spent their day giving neck and back massages to everyone in the room.
Ann Wheat, Director of Caregiver Services at Duet, spoke first, outlining services available for caregivers, and offering plenty of printed materials. Next, we squeezed into the sizeable kitchen where a charming chef showed us how to make nutritious and appetizing meals that don't require hours in the kitchen. Everything tasted marvellous, and I saw smiles and and heard some laughter in the room.
I was privileged to read to the group, passages from the book by author Dale L. Baker, entitled More Than I Could Ever Know: How I Survived Caregiving. I discovered this book while getting to know Dale at one of my writers' meetings, and I could not download it fast enough. Dale cared for her late husband for several years as he suffered with terminal cancer. What I learned from Dale's finely crafted book, is that caregivers need to care for themselves if they want to survive caregiving.
I began with a quote from her Introduction: "There is no easy way to love while pulling away. Yet that's what caregiver survival requires." ( Introduction, p 1.) The audience sat up, eyes widened, and they listened to Dale's voice, telling them, through mine, "His needs consumed me so completely that I lost myself. I became a different person, a person who had forgotten to live." (Chapter 2) Nods of agreement.
I noticed a few taking notes when I read, "How I learned to nurture myself as well as my loved one."(Chapter 2)
I ended the presentation with the question Dale puts to her readers, "If you had four hours next Wednesday to devote to yourself, how would you fill it?" (Chapter 3) Answers ranged from "retail therapy," to "get my hair done," to "golf. I used to golf. I need to go back to it." Then there was a rush to buy the twelve copies I had.
The woman at my table had arrived looking completely exhausted and at her wits' end. After she had her short massage, she returned to her seat, smiling, saying "I never had a massage before." She said her stress level coming in had been at a 10, but as she left, it was down to a 7.