In "Preventing Her Shutdown- Losing My Wife to Alzheimers", Sammie Marsalli narrates a very personal and highly valuable account of his experiences having a spouse with this form of dementia. Whereas I have a number of cases in my extended family, I feel extremely fortunate to have read Marsalli's work. He lays out in detail what might be expected for both victim and spouse in intimate detail.
The author is an American married for four decades to a Chilean wife and living in Santiago. Hence, I found it interesting that he shared some sentiments about the inadequacies of psychiatric care as I have concerning treatment in the United States:
The doctor is really no help at all recommending therapists not really qualified or able to deal with my wife's problems such as not speaking or unable to swallow. Wooo..where am I going on this? I couldn't get any answers or direction to guide me and I really felt blind in "no man's land". After the visit to the doctor, I felt more lost and desperate than ever before. When I started to ask questions about where we were in this disease, what to expect, the only thing he said was “she is in the advanced stage” That's
all he said and gave me a recommendation of a therapist, surely knowing there isn't any professional therapy that can help at this stage.
He makes a helpful point that I will bear in mind and that is to find other people going through similar trials. Caregivers in online and in-person support groups educate and empathize. The [Chilean] Alzheimer's Association helped him greatly. He finds these various groups useful to alleviating some depression. “Loneliness is the caregiver's worst enemy,” he explains.
With respect to interacting directly with a patient, Marsalli emphasizes the value of family members maintaining direct contact with a sufferer. He points out that even if his wife cannot dialogue, she recognizes others in their voice and appearance for her to value the interactions. Numerous such acquired points of wisdom permeate the book. For some people, Chapter 16 may be the most valuable for it is there that he lists a number of do's and don't's pertinent to socializing with his wife. Chapter 31 is similarly a must read for its very important psychological savy. In other chapters, he provides a window into what a caregiver might expect. His warnings are clear, important, and concise, ranging from keeping hazardous materials locked up to vigilantly making physical contact and loving proximity a central part of the day.
Although the book is short, a reader might wish to read it in small doses. The author's style is simply so intense and hard-hitting. Nevertheless, I am very glad to have read it and expect that it will help me with my own family's future.
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From the Publisher
Inside Preventing Her Shutdown
How do I connect with my wife and get her to connect with me? This was my constant desperation as her caregiver especially because she couldn´t speak. I was always afraid she would stop connecting, especially when I got that “blank lost look in her eyes.”
How do we communicate? How do I talk to her? How does she tell me what she wants or needs? How does she feel? Is she sick?
Readers will learn in Preventing Her Shutdown, Losing My Wife To Alzheimer's, hospice care begins at home on the first day Alzheimer´s is diagnosed.
What´s Included In Preventing Her Shutdown
- Learn how we connected even in the advanced stages of Alzheimer's
- Discover what enables connection with someone who cannot communicate verbally
- Personalized home activities that enabled interaction with her family
- How depression was prevented and self esteem promoted.
- Learn how opportunities were created enabling connection and interaction
About Preventing Her Shutdown
Readers will discover:
- The unique personal strategies a home caregiver used to foster connection with a loved one in the advanced stages of Alzheimer´s.
- How to nurture a meaningful relationship despite communication barriers
- Different ways to manage the emotional and physical demands of caregiving
- How to create personalized therapy for a unique behavioral profile
A "John Doe" Home Caregiver Journey
Preventing Her Shutdown, Losing My Wife To Alzheimer's, promises readers a unique inside look at what it takes to keep a loved one with Alzheimer's "connected".
With its vivid and emotionally charged story, readers benefit from the author's experiences “in real time”, personal insight, and strategies that have been developed over time. With its easy-to-follow structure, readers can gain a better understanding of the roller coaster ride of caregiving.
“I realize there are other amateur home caregivers like me on their own trying to take care of a loved one with Alzheimer's. I am simply a typical "John Doe" 24/7 caregiver, husband sharing my experiences and invented therapies to keep my wife connected.”
The book “Preventing Her Shutdown, Losing My Wife To Alzheimer's” is a must-read for anyone dealing with the struggles and triumphs of caregiving for a loved one with Alzheimer's.
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