Elder Caregiving Can Be a ‘Roller-Coaster Ride from Hell’

More than 40 million American women are the primary caregivers for a sick person, very often their husbands. According to a recent New York Times article, when a caregiving wife runs into a friend, acquaintance or even a relative, the most frequently asked question is, ”How is he doing?” The Times reports that people often forget to ask about the wife, who may be struggling to juggle a job and child care as well as patient care.

She faces disruptions in her work and social life, sleep habits, exercise routine, household management and financial situation. She may also be stuck with cleaning up bathroom accidents, servicing medical equipment and fulfilling challenging dietary requirements.

And as one expert put it, for some wives, caregiving is ”a roller coaster ride from hell,” with each day bringing new challenges, demands and adjustments. Diana B. Denholm, a psychotherapist, wrote about the life of a caregiver in her book, ”The Caregiving Wife’s Handbook,’‘ recently published by Hunter House.

Dr. Denholm, who lives in West Palm Beach, Fla., said the caregiving role is especially challenging when the marriage was a rocky one to begin with. Husbands who were abusive when they were healthy can become tyrants when seriously or terminally ill, she learned from wives she interviewed.

For example, a waitress, mother of three and grandmother, had been married for 46 years to a man who was verbally abusive. He developed colon cancer and severe diabetes. Then he had a stroke.

”I’m so angry when others offer to help him, and he pretends he’s so strong and doesn’t need their help,” she told Dr. Denholm. ”When they leave, he expects me to wait on him hand and foot while he screams at me.”

Another woman, a schoolteacher in her 50s married for 20 years to a man dying of emphysema, told Dr. Denholm: ”What really frosts me is that he caused this with his smoking. Now I have to deal with the results. I do feel guilty about wanting this to be over. But how much more can I take?”

Dr. Denham writes that even husbands who were once loving partners can undergo personality shifts, prompting their wives to wonder, ”Whatever happened to the man I married?”

Dr. Denholm herself has experience as a caregiver. For 11 1/2 years, she cared for a once robust, intelligent and loving husband who suffered colon cancer, congestive heart failure, kidney failure, severe arthritis, gout, urinary tract infections, blood clots, erratic blood pressure and Parkinson’s disease. She was able to cope with most caregiving demands, but they eventually made it impossible for her to maintain her professional life.

It is no surprise when serious illness or severe pain results in feelings of anger, helplessness and depression, all the more so when the illness is terminal and the afflicted person loses his sense of self, she says. After many years as ”the man of the house,” the sick husband is once again a child who must be cared for, often by the very person he signed on to protect.

In her book, Dr. Denholm discusses a series of coping strategies that she developed with her husband. She urges women to adopt communication tools that avoid accusations and self-pity, and instead ”create expectations, agreements and understandings,” she said.

”Never start with, ‘We need to talk.’ Besides being a huge red flag to most men, the statement reflects your need, not your husband’s,” she wrote. ”Always use an ‘I’ statement – ‘I need,’ ‘I want,’ ‘I’d like to.’ ” And if an issue is too emotionally charged to discuss with the patient, she suggested talking instead to someone you trust and respect.

One tool Dr. Denholm found to be especially helpful is to create written understandings about finances, individual responsibilities or issues to be avoided.

For example, the waitress, whose husband refused to review finances with her, came to realize it was pointless to keep asking. Instead, she went to the bank, the Social Security office, the Veterans Affairs office and the Legal Aid Society to determine her rights regarding what she and her husband owned.

Dr. Denholm suggested that always ”putting on a happy face” can be counterproductive. ”If we keep a lot of information private, most people will have no idea how bad it might be behind our closed doors.”

Better to ask for help when help is needed.

Kreisman Law Offices has been handling nursing home and elder abuse cases for more than 36 years in and around Chicago, Cook County and its surrounding areas, including Blue Island, Buffalo Grove, Park Forest, Chicago (Marquette Park), Chicago (Chinatown), Melrose Park, Elmwood Park, River Forest and Oakbrook Terrace, Ill.