This year Kathryn has published “A Welcome Respite,” which is a stand-alone chapter about her struggles with caregiver exhaustion and the need for respite. She shares the gradual, almost insipid way in which changes to their routine, which she thought were necessary due to Geoff’s progressing symptoms, were destructive to both their quality of life and the closeness of their relationship.
Fortunately, she also shares how she made positive changes to counter the negatives — once she was able to recognize the signs of caregiver exhaustion. Obviously, her purpose in setting apart these excerpts from “Last Dance at the Savoy” are to help readers recognize their own caregiving exhaustion and offer suggestions to counter it. Kathryn encourages long term caregivers to “find a new perspective and refresh ourselves…Daily periods of rejuvenation are vital, too.”
Like “Last Dance at the Savoy,” “A Welcome Respite” is NOT focused on PSP. It is of general interest to all caregivers. It can be purchased on Amazon for less than two bucks.
“In preserving the impression that all was fine, I was downplaying the increased responsibility and daily adjustments that gave me less time to refresh myself. The lack of respite resulted in concealed anxiety and increased fatigue.”
Geoff’s “desire to keep his condition secret meant fewer outings and less social contact. As he required more care, I cut back on my professional work and outside activities, and we spent much of our time alone together.”
After lunch with a fellow caregiver support group member Kathryn observed, “On my drive home, I realized Mari and I had each expressed major signs of caregiver burnout; anxiousness and fatigue; difficulty sleeping; feeling run down and irritable. Making mistakes while functioning on autopilot indicates difficulty concentrating. Feeling resentful and overreacting to minor mishaps, shouting at the very people we were caring for – Mari and I had both experienced these. Were we also eating and drinking more in place of healthier leisure pursuits?”
“There comes a point when caregivers simply cannot do it all on their own. When the time care for home hospice for Geoff, it should have felt like a respite to me, but I couldn’t see it that way at first. With hospice in place, I was no longer my husband’s sole caregiver – a major disappointment. A doctor was on call, with rotating shifts of nursing aides bathing, feeding and medicating him while I stood by, empty-handed, watching others do what I ought to be doing, and hating that I’d relinquished the intimacy of caring for Geoff myself.”
“Being stripped of the mind-numbing routine labor of caregiving had left me rattled and uncertain. I was experiencing a curious withdrawal anxiety, wanting to be in charge and fearful that I wasn’t. Stress at not being ‘burdened’ was getting to me. I was crying too much, not eating enough. I needed respite and knew it.”