Just after Vanessa and her husband Paul purchased their dream home, Vanessa’s father experienced a sharp decline in his health. He had been diagnosed with Alzheimer’s a year earlier. Vanessa’s mother was in better health, but she was overwhelmed by her new responsibilities as a caregiver to her husband.
Vanessa and Paul began to help her parents tend their garden and keep track of their medical appointments. When her father suffered serious facial injuries in a fall, Vanessa realized that she and her husband could no longer look after two homes while working fulltime jobs. After a series of family discussions, Vanessa and her parents sold their houses. They then purchased a house that was large enough to accommodate the entire family. The arrangement gave Vanessa’s mom the space she needed to take care of herself while helping her husband. Vanessa and Paul took over the housework and contributed to caregiving, including medication management.
Many aspects of their new life have been difficult — none more so than watching Vanessa’s father deteriorate — but they learned to manage as a family, with the assistance of supportive friends. Vanessa writes: “If we can provide the safety and sanctity in these last years that I was given as a child, then that is what we will do.”
Caregivers Taking Care of Their Fathers and Husbands
Vanessa’s story of caring for her father is far from unique. For a number of reasons, women are more likely than men to suffer from dementia. Still, 35% of Alzheimer’s patients are male.
Caregivers of seriously ill or disabled men are often their wives or daughters. Michelle Cottle, an opinion writer for the New York Times, told her story about caregiving for her father and the broken state of the American caregiving system. While Cottle’s father was being treated for bladder cancer, doctors attributed his brain fog to chemotherapy. When they later diagnosed her father with early-onset Alzheimer’s, Cottle shifted her caregiving strategy from supporting a father who was fighting an aggressive illness to helping a father who was approaching the end of his life. Cottle discusses the challenge of navigating the health care system while coping with the “confusing and chaotic” circumstances of her father’s illness. Cottle’s story received more than 2,000 responses, primarily from women who shared their own stories of providing care for husbands and fathers.
A common theme of readers who reacted to Cottle’s story is the emotional trauma that adult children experience when they care for a parent who suffers from dementia. One reader said, “It was the hardest thing emotionally and physically I have ever done in my entire life.” Another remarked, “Some days I cry. Other days I swear a lot.” Caregivers spoke about their exhaustion and sense of isolation. They found it difficult to reach out to friends who have not shared the experience of watching a parent’s physical and mental decline.
Relief Valves
A more positive theme that runs through readers’ responses to Cottle’s story is the resilience and bravery of children who find the strength to care for their fathers in the last months of their lives. Cottle discovered that connecting with people who were dealing with similar issues relieved her stress. It may seem insensitive to joke about Dad’s latest error — mistakenly wearing his daughter’s jeans rather than his own — but Cottle found that sharing dark stories worked as a relief valve. Cottle notes that most caregivers underestimate the need to share their pain with others. She cautions that caregivers “should not try to grind this out alone.”
The Caregiver Action Network echoes that advice. Caregivers who fail to assure that they have adequate support are at risk of developing caregiver stress syndrome. Similar to PTSD, caregiver stress syndrome is characterized by depression, anxiety, and unrelenting feelings of helplessness. The syndrome may lead to social withdrawal, chronic fatigue, sleep deprivation, and a compromised immune system.
In the absence of a nearby sympathetic ear, caregivers might benefit from joining a support group. The Alzheimer’s Association staffs a 24/7 helpline while the Family Caregiver Alliance sponsors both in-person and online support groups. Sharing caregiving duties with another family member also relieves stress. If no assistance is available, making use of respite care can help a caregiver relax and recharge.
Taking care of the caregiver’s own health is a prerequisite to taking care of a husband or father. Untreated stress can lead to heart conditions and mental health problems. It is vital to seek medical advice if stress becomes overwhelming or begins to impair a caregiver’s physical or emotional health.