My father spent the last years of his life in a long-term care residence, suffering from dementia. My brother was his primary caregiver, which means he took greater responsibility for our father’s day-to-day care. I was involved more as a manager of social support. I communicated with the service providers and sometimes advocated on his behalf with his dietician, physiotherapist, physician, and nurses.
It was difficult to witness my father’s deterioration, especially as he lost his ability to take care of himself. He was a proud man who was happiest when he was surrounded by his children and grandchildren. Whenever I visited him, the first question he asked was about my children and grandchildren’s health. Even though he had dementia and struggled to remember his great-grandchildren’s names, their well-being was first and foremost in his mind. When I told him they were well, he sighed and said, “good.” He needed to hear they are well in order for us to continue our visit.
At the time, I didn’t fully realize his emotional and psychological stress of relying on others for activities he had carried out independently throughout his life. Sometimes he withdrew emotionally and other times he became agitated and lashed out in anger. Many of us would also behave this way, if faced with our loss of independence.
When I was a front line social worker, I noticed the intergenerational conflict between older adult care receivers and their adult children who are their caregivers. In one situation, a son who lived out of town paid monthly visits to his 85-year-old mother. During his most recent visit, he was surprised to see her messy surroundings, dirty dishes and empty refrigerator. It surprised him because his mother was an impeccable homemaker.
Concerned about her well-being, he contacted a social service agency and asked to meet with a social worker. I paid a home visit and conducted an assessment to determine the presenting issues and evaluate Mrs. A’s needs. She was a cognitively intact and fiercely independent woman who suffered from rheumatoid arthritis. Her symptoms varied in severity and sometimes flared-up. She moved around her apartment with a walker. In spite of her pain, she had a strong desire to remain independent and insisted she could manage on her own.
She didn’t disclose the full nature of her disability to her son because she was trying to shield him from responsibility and worry. Eventually, Mrs. A. accepted resources such as home care, transportation, referral to a social day program and a social worker who became her case manager. She also agreed to keep her son informed about her condition and her ability to manage her day-to-day activities.
According to McMaster University, in Hamilton, Ont., “More than eight million people or 28% of the population aged 15 and over, provide care to older adult family members or friends, and the numbers will continue to climb as the proportion of older adults continues to rise. Eighty percent of older adults and people with long-term health issues are cared for at home by family and friends.”
Although providing care to a physically disabled or cognitively impaired older person can be rewarding, it also involves many challenges and places burdens on their adult children. It can affect their mental, emotional and physical health resulting in exhaustion, depression, burnout, self-neglect, worry and anxiety. According to an article in the Canadian Medical Association Journal, it disrupts social and family relationships and increases the risk of death.
Some children have difficulty with the role reversal when parents become dependent on them. Most have trouble witnessing their parents’ deterioration. Intensive loyalties to parents may also create conflict within their own nuclear family. Some children put their own lives and needs on hold to care for their aging parents. Others feel angry and resentful because they have not resolved their own issues with their parents.
In his discussion of intergenerational family relationships, sociologist Barry McPherson says: “Depending on the quality of the relationship during the earlier years, the onset of dependency can provide an opportunity to reward the parent for past debts, or to seek revenge for real or imagined parental injustice during childhood or adolescence.”
Some relationships are stuck in an unresolved parent-child dynamic where adult children feel they have no decision-making powers. In attempts to please parents, children do not disclose the difficulty of their caregiving roles, set limits on their involvement, or suggest the parent move to an assisted-living residence.
Getting parents to relocate to a residence when they are no longer managing on their own is a difficult issue. Sometimes parents remain in dangerous situations because their children have issues with the role reversal and/or their inability to make decisions for their parents. For example, when Mrs. B. was in her 80s, she showed signs of dementia which her daughter refused to acknowledge.
The daughter had a close relationship with her mother and was unable to accept her mental deterioration. After Mrs. B. left the burner of her stove on and burned her hand, her daughter realized her mother required a geriatric assessment to assess her cognitive state. Her mother eventually moved into a long-term care facility.
The first step to break these old parent-child dynamics is to have an adult relationship with parents (who are cognitively in tact) by initiating a conversation and disclosing the difficulty with their caregiving role. Family counselling can help and social workers can facilitate these discussions. This can lead to arranging outside resources such as home care services, transportation, meals, visitors, and adult day programs. Other times, it may be necessary for the parent to relocate to a residence that provides services.
It is important for adult children caregivers to take care of their health and well-being and take a break from the demands of their responsibilities. It is also helpful to find someone with whom to share their feelings. It may be a friend, family member, professional therapist, or a caregiver support group. Besides offering mutual support, groups also provide information and coping strategies.
Dr. Brian Goldman, who works in the ER of the Sinai Health System in Toronto, describes an innovative program in the hospital that assesses and trains caregivers to improve their skills and learn problem-solving techniques. It provides psychotherapy for caregivers in distress and respite care so they can take a break. He cites a follow-up study that shows “these programs relieve caregiver stress and help them feel more competent as caregivers.”
Caregiving support resources exist in many communities and can be found by contacting local social service agencies.
This post originally appeared on YouAreUnltd.