Family caregivers of a loved one with dementia are known as “the invisible second patient” because the physical, emotional, and financial strain of the caregiving role is often under-appreciated by others.
It is even under-appreciated by the caregivers themselves.
A recent 60 Minutes segment follows one couple for a decade and vividly illustrates the personal toll caretaking exacts on loved ones.
The couple is Mike and Carol Daly. Carol was diagnosed with Alzheimer’s disease around age 60. She and Mike sat down for their first 60 Minutes interview in 2008, five years after her diagnosis.
At that stage, Carol had a spotty memory and had experienced a decline in her ability to do multi-step tasks, such as cooking, which she used to love. But she was able to be conversational. She was energetic, set on making the most of her remaining years.
Mike, a retired police officer, was confident. He was committed to caring for his wife the way she had cared for their family during their 40-plus years of marriage. The one thing he would not do was put her in a nursing home.
What Mike did not expect was how thoroughly the disease would affect his wife. Her memory went from bad to worse. Her communication skills went from fair to poor to negligible. Her physical ability also declined to the point that she needed assistance for the routine tasks of daily living.
The emotional burden of losing a loved one to a disease is profound. It is compounded by the responsibility of caregiving, which gives no respite for mourning. As the disease progresses, the burden only grows.
Eventually, Mike wasn’t able to keep up. He hired home health aides to assist him in caregiving. That relieved some of the physical and mental strain, but at $40,000 a year, it added a financial stress. Eventually, 15 years after Carol’s diagnosis and after stress-induced health scares of his own, Mike put Carol in a nursing home.
The confident Mike was gone. Humbled, he said he hadn’t appreciated in the beginning how caring for someone with Alzheimer’s is so much more than helping someone with a memory problem. “The impact on everybody else is enormous,” he told the 60 Minutes interviewer.
Mike and Carol are not unique. The effects of caregiving are real. Family caregivers for loved ones with dementia experience a host of physical, mental, and emotional symptoms as a result of their caregiving.
The most common reactions are anxiety, depression, anger, social withdrawal, and changes in physical health.
The growing responsibility for the care of another person whose behavior is increasingly unpredictable and whose health is out of your control is hard to cope with. Add worrying about making a mistake and letting a loved one down, and it’s no wonder that a recent University of Missouri study showed that one-third of caregivers experience moderate or severe anxiety and nearly one-quarter experienced moderate to severe depression.
At the beginning of a diagnosis, anger might seem like the last thing you’d feel toward a loved one. However, dementia can change a person’s mood and temperament, cause them to ask repetitive questions, and make it difficult for them to follow instructions. This frustration, coupled with stress and lack of sleep, can cause caregivers to react with anger.
Social withdrawal becomes more common the further the disease progresses and a loved one requires more time and assistance. Finding time — or energy — for socialization can become difficult and after years of strain, social networks also tend to dry up. When the answer is always “no,” people learn to stop trying to make dinner plans.
The body also reacts to caregiving. Caregiving burden can lead to a litany of potential health changes. A study published in the Dialogues of Clinical Neuroscience listed the potential health problems facing caregivers, including heart disease, diabetes, arthritis, ulcers, and greater likelihood of smoking, drinking, and poor sleep. Caregivers are also less likely to exercise and practice other healthy habits.
Care Partners
Mike ultimately chose to put his wife in a nursing home, after which he said he and Carol were doing better.
Sometimes, playing the role of nurse, chauffeur, health aid, cook, and maid means there is no capacity left to be a loving family member.
Finding a trusted care center where a loved one’s needs will be met frees the caregiver from the burden of caregiving. With no responsibility other than to love and be present they can reconnect with their loved one as a spouse or adult child.
For more information on how you can help your loved one live a meaningful and fulfilling life, download our eBook Life at the Cottage: A Guide to Highgate’s Unique Approach to Memory Care. You’ll learn about Highgate’s positive approach to memory care and the training provided for care partners and how shifting the caregiving responsibilities to Highgate allows you to simply enjoy the relationship with your loved one again.