When Dementia Strikes Home, We All Need Help

A review of, Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias, 101 stories, eds. Amy Newmark and Angela Timashenka Geiger, (Cos Cob, CT: Chicken Soup for the Soul Publishing, LLC, April 2014).  Available online at Barnes and Noble, Amazon, and perhaps your local bookstore.

Photo by Matt, Chicken Soup for the Soul, https://www.flickr.com/photos/dippy_duck/

Photo by Matt, Chicken Soup for the Soul, https://www.flickr.com/photos/dippy_duck/

The editors of this fine book have compiled 101 useful stories of living with dementia. I wish it had been available years ago.

Mary Jane (MJ), my mother-in-law, suffered from dementia for many years. My wife, Barbara, and I aren’t sure when it started; but MJ had been growing less capable, more dependent, since the late 1950s.

Barbara helped her mother regularly during the 1960s, and I joined the struggle after we married in 1970. As the years rolled along we traveled more often to MJ’s town to help her with emergencies, and in 1992 we moved her to an apartment in Auburn, Alabama where we were living. By 1995 we had taken her keys and car and Barbara was managing her finances, shopping, meals, health care, and more. 

In 1997 we moved MJ to Houston, Texas to spend time near one of her other daughters. Her youngest daughter soon moved to Houston to help. In January 2002 her daughters moved her into a nursing home, despite her constant objections to such places.

As it turned out, she loved being there. She didn’t quite know where she was, yet she enjoyed the other patients and staff, who were wonderful. One day after being there about two months, she blurted out to her daughter on a visit, “Betty, do you know I’m in the hospital?” She passed away peacefully in 2006.

When Barbara and I were caring for MJ., we felt alone. None of our contemporaries were caring for a parent with dementia. Barbara was a registered nurse with gradually increasing clinical experience, and that was our one big advantage. She had context, and she helped me get through it. 

I was a professor and found it almost impossible to deal with a person who “unlearned,” who might do something well one day but not the next. I needed this book but didn’t have it. 

An Alternate Reality

The first two chapters, “Accepting a New Reality,” and “What Does It Feel Like,” introduce readers to the world of dementia. The chapters show us the fantasy world of sufferers and the burdens of caregivers. One patient wants to spend time with the lady in the mirror, who is always nice to her. Another patient grows agitated and unmanageable because she thinks she has to pick up the children from school during a torrential rain. Her caregivers told her all would be okay: a neighbor was picking up the children. On and on the stories go, on and on come creative, compassionate resolutions. Patients and caregivers, problems and solutions, alternating toward a litany of hope and prayer to guide readers. 

The stories written by patients themselves are especially revealing. Kris Bakowski, diagnosed at age 46, tells how she must rest frequently, slow down, pace her activities, follow routine, and live in a quiet environment. These are common prescriptions for patients. 

Kris publishes a blog (http://creatingmemories.blogspot.com/?spref=fb) that reveals her experience to anyone wanting to see how she has fought the disease over years and how she thinks about her family, her fate, and the time ahead. 

Chapter 3 gives tips for coping. One caregiver takes the batteries out of a thermostat remote control so the patient can believe she may change the temperature to suit her needs. Another caregiver records TV shows and watches them with a patient. They can stop the show to discuss what’s happening; they can replay it to watch parts again. An otherwise frustrating experience of watching real-time TV becomes a relaxed, pleasant evening. 

The book reviews tough choices that people make, like getting family members to commit to rotating care. One story describes the tragedy of bankruptcy and the loss of a home, after which the mother and diagnosed father moved in with a daughter. 

Yet others relate the funny side of mental decline, like the wife whose afflicted husband was driving her nuts. He always had a vigorous sexual appetite, and with dementia he would forget that they just had sex in the morning. At noon he would coo, “C’mon honey, we’ve not had sex in days.” 

Patients respond well to music and art.

Community

Above all, the book stresses the need for community and inventiveness. Caregivers need to invent ways of joining the fantasies in order to relate to the immediate world of their patients. And it stresses the plain fact that most people can’t do this journey alone. Caregivers need to mobilize an entire family, and they must consult outside help including support groups.

Months ago I wrote about John Bayley who cared for his wife, Iris Murdoch, as she declined with Alzheimer’s. He had constant guidance from his doctor and much support from friends. 

Anyone working with dementia will want this book. It offers a pot full of ideas for coping and a second pot full of empathy to ease the pain and loneliness of the journey, a journey away from rationality and humanity. Reading these stories pulls us back and keeps us human at a time when we need it most. 

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