The Toll of Caregiving

I recently saw a patient whose husband urgently brought her into the office. The husband, her caregiver, made an appointment because he was very concerned about a change in his wife’s appetite, behavior and breathing.

I examined her and found her to be stable with her dementia, clean and comfortable. But after spending some time with the husband, I found him to be disheveled, overwhelmed and worried. It became clear that my patient’s husband needs some support.

This made me think: How did my patient’s husband find himself in this situation? Usually it’s simply a matter of proximity or availability. In this case, the husband has become the caregiver. The couple’s children don’t live close enough to assist on a daily basis.

Caregiving’s Progression

The caregiving role evolves over time. It may be simple at first, but can progress to an all-encompassing, time-consuming responsibility. Too often, it takes an emotional and physical toll on the caregiver.

For my patient’s husband, caregiving has progressed to become very stressful and burdensome. Additional support may be needed to relieve some of his load. Unfortunately, it is only when caregivers succumb to the relentless pressure do the family and community recognize caregiving’s severity and scope.

A caregiver as an unpaid individual (a spouse, significant other, family member, friend or neighbor) who assists others with activities of daily living and/or medical tasks, according to the Family Caregiver Alliance. The number of family caregivers of our elderly is staggering: The Alzheimer’s Association’s 2013 Facts and Figures states that “in 2012, 15.4 million caregivers have provided more than 17.5 billion hours of unpaid care valued at $216 billion.” These numbers are only expected to increase.

Caregiving can be a relentless, tedious responsibility. Few volunteer willingly. No one wants to need a caregiver, but it is usually accepted out of necessity and provided out of a sense of obligation and love. While providing so much assistance, caregivers rarely notice the toll that their efforts take on themselves. Some become upset at the suggestion of getting help and insist they can handle things on their own. Often, caregivers feel unappreciated or under-recognized for their commitment. They often don’t hear “thank you” from the care recipient or family members.

Caregiving Help

Formal caregivers are paid to provide support at home or at an adult day program, nursing home or assisted living. To find one, a social worker in the North Shore-LIJ Geriatric Medical Group‘s office is available. The Memory Disorders Center provides community referrals for adult day programs and agencies that can find help for the patient and respite for the caregiver. Also, support groups can be valuable for locating services: Other caregivers are a wealth of knowledge and creative solutions. Download our free Caregivers Resource Guide for helpful links and phone contacts for support groups and many other means of support, or call the Senior Navigator helpline at 888-243-6272.

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