By David W. Hart, Ph.D.
November is National Family Caregiver Awareness month and it seems like an apropos time to consider issues important to the millions of family and friends who devote themselves, often to their own detriment, to the care and well-being of the ones they love.
The National Caregiver Alliance and the AARP report that approximately 34.2 million Americans and nearly 3.5 million Californians have provided unpaid care to an adult age 50 or older in the last 12 months. More than 16 million caregivers in the United States are caring for a person with Alzheimer’s disease or a related dementia. In total, the value of services provided by family caregivers is estimated to have an economic value of nearly $500 billion. Yes, that is billion with a b. For some context, this number is larger than many state-based economies around the world.
- Caregivers, on average, spend 13 days each month on tasks such as shopping, medication reminders, transportation, laundry, meal preparation, and housekeeping.
- More than 96 percent provide help with activities of daily living (ADLs) such as personal hygiene, dressing, grooming, and getting in and out of bed.
- On average, family caregivers spend 24.4 hours each week providing care.
- Caregivers caring for a person with Alzheimer’s disease or another dementia report spending an average of 9 hours per day (Fisher, et al., 2011).
One can imagine, after reading the data, that family caregivers are stressed. Beyond stressed, actually. It’s been a singular privilege to facilitate dementia specific caregiver support groups for the last 10 years and the stories shared are simultaneously heartbreaking and inspiring.
What I hear most frequently, though, is that the standard directive – caregiver, care for thyself first – is not entirely helpful. Caregivers commonly report feeling like they’re doggy paddling in a treacherous waters, loved one strapped to their back, heads barely above water, without a buoy in sight. No lifeboat, no coast guard, no oxygen. Advice to place one’s self first can feel unrealistic or even impossible in dire situations.
That’s not to suggest that the advice is poor – it’s not – but the edict is often given too soon. The initial goal, in my work with caregivers, is to determine whether or not the person being cared for legitimately requires the caregiver’s full assist. In other words, can the care recipient swim a bit on his or her own? The caregivers who attend my group are superheroes, strive for absolute perfection, and tend to overcompensate for their loved one by offering too much help. This type of caregiving pitfall is frequently driven by the caregiver’s personality style and likely promotes passivity and neediness of the care recipient.
My caregiver support group has developed two simple questions to measure caregiver output (care of another) and input (care to self): Is my loved one safe and am I sane? The primary responsibility of a family caregiver is to ensure that his or her loved one is physically, emotionally, sexually, and financially safe. That doesn’t mean that the care recipient is swathed in bubble wrap and placed in a padded room.
The objective is to maximize safety while honoring your loved one’s individuality and your own physical and emotional well-being.
For instance, a client recently reported that her father, who was having challenges with balance and gait, refused to walk with his cane. She was constantly afraid that he would take a fall but with each reminder to use the cane, the more resistant he became.
So what’s the solution? There are several options but one that best illustrates the point is to maximize his safety while minimizing the insanity of engaging in futile efforts. Removing throw rugs, identifying and purchasing appropriate foot wear, padding cornered edges, installing grab bars in the shower, and utilizing fall sensors may all supplement this care recipient’s safety. And just as importantly, help the caregiver to minimize exposure to her father’s negative reactions.
Establishing safety and maintaining sanity are not mutually exclusive. Sometimes one supersedes the other, depending on contextual circumstances, but maintaining both as priorities will go a long way in reducing caregiver stress. Here are a list of additional strategies to care for the caregiver:
- Setting limits – chorale the voice that believes you can do it all.
- Examine your motivation – reminding yourself of the why might inspire the how.
- Dole out the chores – it’s ok to ask for help
- Seek out resources – the community has a number of caregiver resources to help you develop a competent care plan. You might start at the LA Caregiver Resource Center (www.fcscgero.org) or HELP in Torrance (www.HELP.org).
- Learn to say no – it’s the most important word in the English language.
- Let go of futile efforts – safety and sanity first; everything else is secondary.
- Join a support group – seriously, you’ll profusely thank me later
This list isn’t exhaustive, of course, and by no means do I intend to communicate that my suggestions are superior to others’. To learn more, there are several evidence-based and low or no-cost programs in the South Bay that can serve as life boats to carry you and your loved one to saner shores.
- Beach Cities Health District facilitates Savvy Caregiver, a six-week course on self-care for the family caregiver. (www.bchd.org)
- Several organizations across the South Bay offer caregiver support groups, including Torrance Memorial Medical Center (www.torrancememorial.org) and Alzheimer’s Greater Los Angeles co-sponsors dementia specific groups at Silverado Beach Cities and my group at Always Best Care South Bay.
- Finally, if you’re a caregiver caring for a loved one with Alzheimer’s disease or another dementia, our next Caregiving Essentials course is scheduled for Saturday, Dec. 15. You can email me for more information.
Standing in solidarity, with you, the reader.
David Hart, Ph.D., is the director of clinical services at Always Best Care Senior Services in Torrance and is a faculty member in the Department of Counseling at California State University, Fullerton. Hart, chair of the South Bay Dementia Education Consortium, specializes in working with older adults with dementia and their families. For more information, go to alwaysbestcaresouthbay.com or contact him at firstname.lastname@example.org or at (310) 792-8666.
Source: Orange County Register