Las month I ran a guest post from John Stringer on his story of living with dementia. Martha Stettinius, who has written a book on this subject, saw the post and offered me a guest post, which I’m happy to run as so many people responded so well to John’s post.
A Family Caregiver Shares an Inside Look at Dementia Care
Alzheimer’s disease and other kinds of dementia are truly becoming an epidemic. One in 8 people over the age of 65 will develop Alzheimer’s disease or another dementia, and those aged 85 have a fifty percent chance of developing the disease. Even if we don’t get dementia ourselves, we are likely to become a family caregiver for someone with the disease. If we are unable to care for that family member or friend at home, it’s important to know what to look for in a dementia care facility, and how to distinguish assisted living from “memory care” and nursing homes.
At age 80, my mother, Judy, is living with advanced dementia (vascular dementia and probable Alzheimer’s disease), and I’ve served as her primary caregiver for 7 years. She’s lived in my home with my husband and two young children, then in assisted living, a rehab center, a “memory care” facility, and now the dementia ward of a nursing home.
In the spring of 2005, my mother lived with us briefly, but she was unhappy and needed more independence, so we convinced her to move to a nearby assisted living facility. Many of the assisted living residents had some degree of dementia, but activities and care seemed tailored to the so-called “Independent-Living” residents. Staff did not receive extensive dementia training, and interactions were minimal. To my dismay, Mom spent most of her days watching TV.
In 2007, after falling and fracturing her pelvis, my mother suddenly became incontinent. The fall may have accompanied a small stroke. After Mom spent some time in a rehab center, the assisted living facility staff were not allowed (by their contract, and by our state’s regulations) to physically help my mother change her adult diapers. I had to hire private aides to come in for several hours a day. The facility’s case manager told me that my mother’s needs had fallen into a “gray area.” It was time to move her. But where?
I toured a local “memory care” cottage, most impressed not with the plush, home-like environment—the light-filled windows, the green plants, the white, long-haired cat lounging on the hearth—or the seeming contentedness of the residents who listened to oldies on a CD—but the forthrightness of the administrator who gave me the tour. When I asked her, “At what point, exactly, would my mother have to move out?” she told me, “Residents must be able to feed themselves, and be able to walk for at least a few steps, for example from the bed to a wheelchair.” That’s the kind of answer I’m looking for, I thought. No “gray areas.”
Mom would live in this memory care facility for nearly 3 years—years that seemed her happiest in a long time. Mom rewarded the staff’s affection with lots of smiles and laughter. Firmly in the middle stages of dementia, she joined the activities, sparked a romance with one of the men, and generally enjoyed living in the moment, no longer tortured by awareness of her disease. Although she had her moments of agitation, the staff all received special training in dementia care, and they knew how to keep her calm and feeling safe.
By May of 2010, however, she seemed to have forgotten how to feed herself, and was losing weight. I looked for a nursing home in the area that was on The Eden Alternative registry—a nursing home that follows the philosophy of person-centered care championed by Dr. Bill Thomas and his wife, Jude—but the closest was 3 hours away. Mom moved into a local nursing home, where for the past 2 years she has received excellent physical care, if not the emotional sustenance and vibrancy one might find in an Eden Alternative nursing home (available in New Zealand and many other countries. Visit http://www.edeninoznz.com.au/html/s01_home/home.asp for more information). She lives on the dementia floor, where staff members receive some specialized training, but residents in the final stage of dementia rarely enjoy individual attention or appropriate stimulation.
Though she can no longer speak, and is immobile in a wheelchair, Mom continues to enjoy people, and shares her brilliant smile. Counter to the stereotype of people with dementia as “all gone” and “shells” of their former selves, Mom is still “here”—still Judy. In addition to visiting her myself, I’ve hired what I call “paid friends” to see her regularly—a massage therapist who specializes in working with elders, and one of the resident assistants from her memory care facility, both of whom have continued to visit Mom each week.
I hope that we will see an increased public understanding of Alzheimer’s and other dementias, and the need for specialized care. Most countries must bolster, rather than cut, federal funding for dementia research and community support for family caregivers. And we need to press for minimum standards for dementia training for all health care providers and facility staff, from home care to assisted living, memory care, nursing homes, and hospice. As the 35.6 million with dementia worldwide in 2010 doubles by 2030 to 65.7 million, and then nearly doubles again by 2050 to 115.4 million, we will be glad we prepared for the “silver tsunami.”
Martha Stettinius is the author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,” available at major online book retailers, including New Zealand’s Mighty Ape (www.mightyape.co.nz). She serves as a volunteer representative for the U.S. National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com.
Martha, with her mother, Judy, in 2012″