7 January 2014

Understanding the Emotional Needs of Someone Needing Care

“It is hard to ask those around us, even those who love us, to do things for us, intimate things, over and over again”

There are many adults whose already complex life is made more complex by caring for a disabled or infirm family member. Even when hired, trained, aid-providers are in place, many kinds of assistance still fall to family members.  

Sometimes the hardest part of being a caregiver is understanding the feelings of the person who receives care. You may see clearly the physical needs of a frail parent or a partner with a disability, such as handrails on stairs or help with activities of daily living, such as bathing and getting dressed.

The emotional needs may be harder to identify, partly because older adults and people with disabilities often hesitate to talk about their fears. But insights into some of their concerns emerge in memoirs and biographies of public figures who lived with physical or mental health conditions. And few Americans have struggled with serious illness on a wider stage than Franklin D. Roosevelt.

One day the future U.S. president was a vigorous 39-year-old swimming and playing with his children at his family’s summer home on Campobello Island. Two days later, struck by polio, he couldn’t walk. For the rest of his life, FDR could move about only with the aid of a cane, crutches, or a wheelchair, and he would need help from many kinds of caregivers.

The story of how his illness affected him inspired the new book The Man He Became: How FDR Defied Polio to Win the Presidency (Simon & Schuster), written by the award-winning biographer James Tobin. FDR developed polio in 1921 and, Tobin says, “brushed aside every hint of condolence” or suggestion that he had suffered “so much as a bit of hard luck.” But by quoting others of the same era, his book suggests the emotional impact of a debilitating illness. Tobin writes:

“The sense of obligation can become crushing.  ‘It’s hard to ask those around us, even those who love us, to do things for us, intimate things, over and over again,’ wrote the polio activist Lorenzo Wilson Milam. Most people, Milam observed, will not grasp the psychic cost of dependence – ‘a word so meaningless to those who can move and walk and dance … (and, most sacred of all, can jump up and move away)’ – until they lie on their deathbeds. The inability to perform an act as simple as dressing oneself reminds one of being a helpless child.”

Not everyone reacts that way to needing a lot of care. But someone who depends on you may need as much emotional as physical support. Buried feelings can lead to depression, which often goes untreated in older adults, As Tobin notes, the many effects of a devastating illness can threaten not just people’s health but their entire identity: “All of these changes — the perception of body parts as alien, the altered relations with others, the damage to self-esteem – roll together in a broad assault on one’s whole sense of self.”

 If you are a caregiver to a disabled or failing loved one, always remember that you need extra support and nourishment to be able to sustain this work. Be sure you get what you need to keep your own batteries charged so that you can do this work.