You’ve likely read a version of an inspirational story about an elder who appears to be in a hurry. When asked the reason for his urgency, he answers, “To visit my wife, who’s in memory care. I feed her at 8:30 every morning.” Someone asks: “Why rush when your wife no longer remembers you?” He replies, “Because I remember for both of us.”
Last month, the world raised Alzheimer’s awareness with the theme “Remember Me.” One of the leading fears of a person with Alzheimer’s, the leading cause of dementia, is being forgotten. When I lose my mind, will you remember me?
In November, the U.S. recognizes National Family Caregivers Month. To bridge the gap between these two months, we’ll address caregiver burden.
Caregivers often provide assistance with at least two of the five activities of daily living: bathing, dressing, eating, toileting and transferring. Day-in and day-out, with no end in sight, they wonder: “When will caregiving end?”
Years ago, families endured quietly. The Confucian model of filial piety, where one respects and even cares for one’s parents and elders, is evidenced across cultures. Many feel honored and privileged to care for parents (including me).
[See: 14 Ways Caregivers Can Care for Themselves.]
The Burden of Caregiving
Little do we know the magnitude of responsibility we take on after stepping into the role of caregiver. Over the last 20 years, the tide has shifted. With greater awareness, caregivers’ voices are being heard. Their words are also rippling across social media platforms. The Coalition to Transform Advanced Care, in partnership with the Cigna Foundation, recently completed a review of over 6,700 website discussions where family caregivers write about caring for a loved one. The results are overwhelmingly negative with workload and lack of support contributing to mental fatigue, loneliness, sadness, guilt, anxiety and more.
Years earlier, doubting I could carry on, I called my father’s attorney. He helped me grasp the breadth and depth of the caregiving role I had undertaken. “Brenda, imagine you’re walking along a beach. You pick up a grain of sand. You keep walking, and the weight of this one grain grows heavier and heavier. Soon, you look back and realize you’re carrying the whole beach!”
His picturesque analogy, along with another one — picking up an acorn only to end up carrying the whole oak tree — helped me through periods when caregiving felt impossible.
[See: 14 Ways to Protect Seniors From Falls.]
Will You Remember Me?
Day after day, when a caregiver is caring for, cleaning up after and reminding a forgetful family member, he or she likely loses that “can-do” spirit. Soon, the caregiver is asking: “How long can I go on?”
When a confused care recipient lashes out, the burden grows heavier. When a loved one asks the same questions repeatedly, the weight of an acorn grows heavier. When one constantly gets up and wanders at night, unable to tell the difference between night and day, that grain of sand grows as heavy as all the grains on the beach. Meanwhile, the caregiver continues helping a loved one with the activities of daily living, including toileting, dressing and bathing. The workload and emotional toll grows greater than many can bear.
Of course, there’s that gut-wrenching moment when, after everything you’ve done, your loved one looks deeply into your eyes. After desperately trying to recognize you, he or she asks: “What is your name?” With a pain-filled heart, you look at your husband, wife, mom or dad. Forcing a smile, you say your name. And then you hear, “Oh, I won’t forget that! That’s the name of my [spouse, son, daughter].”
Too many caregivers carry on for too long. Instead, it’s important to step aside and take a respite before something bad happens. Assess the situation from a distance while allowing someone else — a family, friend or professional — to help carry the caregiver burden.
[See: How Music Helps People With Alzheimer’s Disease.]
Four Options to Help Lighten the Caregiver’s Load
1. In-Home Care: Invite other family members to step in for an afternoon or day. Instead of telling you what to do from a distance, they’ll gain first-hand experience (and better appreciate you). Invite a friend or neighbor as a companion for your loved one for a few hours, and spend the time doing something different. Invite professional caregivers through in-home care agencies, so you can take a respite. Mix things up — you stay home while they go on an outing.
2. Support Group: You need to feel like someone understands what you’re going through and supports you along the way. While the friends and family you enjoyed prior to caregiving may no longer be a part of your life, you’ll form a new family of like-minded compassionate caregivers. Online and in-person support groups are necessary for survival.
3. Adult Day Care: For a half day, full day or every day, send your loved one to adult day care, or ADC. The socialization and activities at ADCs are hard to replicate at home, day after day. Besides, ADCs offer a stimulating change of pace with opportunities to meet new people and be involved in different activities. If you are a caregiver who also works outside the home, this is an affordable option. Depending on your care recipient’s care needs, consider alternating with in-home care.
4. Residental Care or Assisted Living: When a week’s vacation is what you need, consider residential care. Whether your loved one stays in a home with five or six beds or an assisted living community, it’s an opportunity to try out different care options from time to time.
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Caregiver Burden: Help Carrying the Load originally appeared on usnews.com
