It is definitely NOT crying wolf when a full-time caregiving spouse says she wishes she had more help. For Irene, help or support means many different things, but primarily it means “check-in” phone contacts from family or e-mails and notes from friends, not someone to weed her garden. Time with loved ones, if only for lunch or a coffee break, is treasured. Most of her days and nights she is alone with her husband, who totally depends on her for  meals, medications, appointments and routine reminders of all activities like bathing or dressing. Yes, she hires housekeeping help which allows her one morning a week to enjoy some “retail therapy,” but the silence and separation from those she loves is as painful as the five times she wakes in the night to help her husband to the bathroom. She has taken one trip to a college reunion with full-time paid help to back her up, but that was over a year ago. Caregivers need daily support and encouragement as well as intermittent respite away.
“Sometimes I feel so alone, like no one remembers him, and my friends and family certainly do not seem to know that I need to be shown that I am loved and appreciated for me and my commitment to this 24/7 caretaking. I know, I know, I know that everybody has full and demanding lives, but how much time does it take to pick up the phone and say, ‘Hey Mom, how’s it going today? I have been thinking about you and wish I could send over an angel to give you a hug.’ That would make my day! I would love just any little window into their lives to give light and perspective into mine.”
Irene is not alone in her feeling of isolation and neediness. Many caregivers note that family or friends drop away from folks with dementia. This reaction may be from denial of the painful changes they see or from not understanding how to maintain the simple caring relationship that is so valuable to both the diminishing elder and the family caregiver.
Unspoken pleas for emotional help may be perceived as a request for considerable time and physical involvement when just a simple card or note from family or friends will open a window out of a life of medical management and daily care for ill spouses or parents. Online cards and notes with chatter and good wishes help caregivers. Phone calls let folks know they are being thought about. The once-a-month Caregivers Support Group at the Senior Center also does a lot to make caregivers feel better, but 24/7 caregivers need a friendly boost more often than that. I wish every day was a caregiver recognition day … and it can be if we all reach out more frequently to those we know who would get a lift from caring contact.
Meanwhile lonely caregivers sit and wait.
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Peggy Cohn, BSN, MPH, Ph.D., is a retired geriatric-care manager with a background in public-health nursing and degrees in family studies and aging. The stories are drawn from local caregivers of folks with Alzheimer’s disease. All caregivers and their families are anonymous to protect their privacy and dignity.