Thursday, September 23, 2021

Not All Who Wander Need Be Lost: Stories of Hope for Families Facing Alzheimer's and Dementia - Lisa Skinner with Ken Paglia

Summary: Not All Who Wander Need Be Lost is a concise guide to navigating the heartbreaking challenges of having a loved one diagnosed with Alzheimer's disease or other dementias.

Through a rich trove of stories culled from her years in the eldercare industry, Lisa Skinner offers insight into the difficult questions families face, including:

- How do I respond to a loved one's false belief?

- Am I abandoning my parent if I place them in the care of professionals?

- How do we make the best of our time left together?

Skinner's original thinking and counter-intuitive solutions provide family members, spouses, children, caregivers, and others with the tools they need to effectively manage the symptoms of brain disease.

Readers of her book will feel empowered to work through the difficulties of the disease, and return to what matters -- enjoying their remaining time with their loved one.  

(Summary from back of book - Image from amazon.com -- This book was given to me for free in exchange for an honest review)

My Review:  As a behavior expert in the field of Alzheimers and related dementia, Lisa Skinner has had plenty of experience helping families faced with a life-altering diagnosis.  In Not All Who Wander Need Be Lost, Skinner shares stories from her own family as well as stories from her time as an eldercare advisor.  Most chapters contain the account of an individual struggling with Alzheimer's or dementia symptoms, how caretakers responded, and a special section that explains how reader's might be able to apply what they have learned.  Let me be clear: This book does not not contain a cure for Alzheimer's or dementia, but it does offer a slice of solace to those who are suffering and a glimmer of hope to those overwhelmed by the realities of a loved one in crisis.  

As I read the accounts in this book, it was interesting to see how a small change in environment or a renewed sense of purpose has the potential to calm a troubled heart.  I was especially moved by the story of a woman named Martha, whose Alzheimer's had affected her ability to communicate effectively.  She lived in a care facility and frequently screamed at the top of her lungs for no apparent reason, which was rather disconcerting for those who lived and worked in the immediate vicinity.  After Skinner returned from a special training, she introduced a 'life-station' to Martha's memory care unit, complete with a baby doll, clothes, and assorted child care equipment. Within a week, Martha found contentment with her new little charge and, by all reports, never screamed again.  A small change in Martha's environment and a renewed sense of purpose had made all the difference.     

Another aspect of the book that I found particularly impactful was the concept of 'joining' a loved one's altered reality.  So often we feel compelled to 'correct' an individual who is confused, when the best thing for their mental state might be to play along.  For example, if a loved one is insistent on 'going to work' long after retirement, creating a work-like space in the home or care facility can help them experience that reality safely.  The author reminds the reader that if a loved one perceives a specific, intense need, "the need doesn't have to make sense to be rooted in reality."   Whatever the need, it is real to them. Occasionally, we must place ourselves inside that reality if we hope to help.  What may feel like lying can, in fact, be compassionate care.  

Not All Who Wander Need Be Lost is a rather slim volume but its diminutive size is perfect for readers who might already feel lost in a sea of medical information and need a 'beginners guide' to Alzheimer's and dementia. One of my favorite aspects of the book was a brief but helpful glossary that defines certain signs and symptoms associated with dementia.  Using this glossary, family members may be able to pinpoint potential symptoms of dementia and use the correct terminology to communicate more effectively with care providers and medical personnel.  Following the glossary, there is also an addendum that delineates the basic stages of the disease's progression.  I know that sounds like it could be a bit of a slog but it is fairly condensed and straightforward.

If I have learned one thing from Not All Who Wander Need Be Lost it is that life does not have to end with an Alzheimer's or dementia diagnosis.  One of my favorite quotes from the book says:

So often when we talk about Alzheimer's disease, we focus on the effect it has on the family.  Slowly losing our loved one to brain disease is one of the hardest things we'll ever face.  But we speak as if our loved one is already gone -- as if there's no longer a person in that body who's aware of his or her surroundings.  And that's not always true.

Knowledge, flexibility, creativity, and compassion, can help a loved one find joy and purpose in their new reality, whatever that reality may be  Long story short -- If I were processing a loved one's recent diagnoses, Not All Who Wander Need Be Lost is the book I would want someone to hand me.  

My Rating:  4.25 Stars

For the Sensitive Reader:  All clear.

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