Sarah Jones, an 85-year-old woman with Alzheimer's who lived in Columbus, Ohio, was unable to care for herself. She could no longer prepare meals, she couldn't run the vacuum cleaner, and she didn't understand what money was, let alone manage her finances. What's worse, she was incontinent and couldn't bathe herself. She also stayed awake at nights, frequently yelled at her loved ones and worried constantly about people who weren't there.
Her daughter, Joyce, had moved into her home to care for her. She had three different people taking turns watching her mother while she worked her full-time job. She couldn't quit the job because she needed the health care insurance. She herself had type I diabetes. Needless to say, she was exhausted from caring for her mother. But she said she'd rather die than put her mom in a "home."
Joyce's daughter, Beth Knut, currently a business executive in Dayton, Ohio, thought the situation was so dire that her own mother might actually die as a result of her heroic efforts to care for grandma Sarah at home.
Beth describes her fears:
After several episodes when my mom's sugar levels went down perilously low, I understood that the volatility of brittle diabetes, which my mom normally managed to live well with, had turned dangerously life threatening when combined with the stress of taking care of grandma. I hate to say it, but I seriously began to wonder who would die first, grandma or my mom.
According to the Alzheimer's Association, 15.9 million Americans are caring for people with Alzheimer's. These patients require around the clock care and monitoring, which is exhausting to the caregiver. You can't be there for your loved one and provide high quality of care if you're physically fatigued and emotionally burned out all the time. It's also possible you'll spend so much time caregiving and worrying that you won't be able to enjoy spending time with the person.
In addition, caregivers often ignore their own health, which can have serious consequences: The Alzheimer's Association has stated that:
Caregivers not only suffer emotionally but also physically. Because of the toll of caregiving on their own health, Alzheimer's and dementia caregivers had $7.9 billion in additional health care costs in 2010. More than 60 percent of family caregivers report high levels of stress because of the prolonged duration of caregiving, and 33 percent report symptoms of depression.
According to the National Family Caregivers Association, family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off the caregiver's life. The Alzheimer's Association report states that caregiving may also have a negative impact on the employment, income and financial security of caregivers.
Many families who have loved ones with Alzheimer's disease or other dementias are extremely reluctant to place them in a long-term care facility. The vast majority don't want to do it, and many refuse to even think about it. Some feel it's the most cruel, shameful thing they could possibly do to their loved one, even if they have access to a high-quality facility nearby.
Standing back and looking at the situation more objectively, however, it becomes clear that sometimes nursing home placement is the most loving course of action for the person with Alzheimer's. In many cases, caring for the person at home actually deprives them of the amount, quality and level of care and safety they need.
Nursing home placement should be of special consideration for individuals in the mid- to late-stages of the disease. These people desperately need so much more care than a single person or family unit -- even with some paid help coming in -- can provide.
It takes a village to care for people in these stages of Alzheimer's. They need primary care doctors, specialist physicians, dentists, nurses, aides, laundresses, cooks, dishwashers, housekeepers and maintenance men. They need an activity director, a dietician, and perhaps a social worker. And they need these most of these people to be available on site in shifts or on call 24 hours a day, seven days a week.
They also need other people around them to provide social stimulation, and they need trained professionals on duty at night who can check on them while they're sleeping. Further, those who have a tendency to wander need to be in a secure environment from which they can't walk away and become lost -- the Alzheimer's caregiver's nightmare. Most importantly, however, they need an administrator to train, coordinate and direct the efforts of all these personnel. No one can meet all of these needs while caring for their loved one at home.
So when you reach the point where you're physically worn out and emotionally spent the majority of the time, stop and give some serious consideration to placing your loved on in a high-quality long-term care facility. It isn't a cop out. It can be by far the most loving course of action, and the best course of action, for the health and well-being of your loved one as well as for you.
Marie Marley is the author of the award-winning Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer's caregivers.