Patricia A. Boswell - Caregiving with Love and Joy: An Experts Guide to Providing the Best Alzheimers Disease and Dementia Home Care

PRAISE FOR

Caregiving with Love and Joy

Throughout the U.S., there are significant disparities in Alzheimers and dementia diagnosis rates, access to treatment, and quality care. But there dont have to be. In fact, we can begin to level the playing field right at home. Patricia Boswells Caregiving with Love and Joy provides critical lessons and pertinent information that every family can utilize to better understand Alzheimers disease and related dementias, and then create better, more meaningful daily interactions with those who are suffering.

Goldie Byrd, PhD, executive director, Center for Outreach in Alzheimers, Aging, and Community Health

Patricia Boswell writes as if she is your warm and wise close friend, one who is a remarkably experienced nurse and caregiver. The book is full of practical knowledge and solutions for the many challenges of caregiving. I especially admire that Boswell starts with and frequently returns to the theme of self-care for the caregiverthis is the key to sustainable and loving care. Bravo for a book that will improve the lives of many caregivers and their loved ones!

Tia Powell, MD, professor of epidemiology and psychiatry, Albert Einstein College of Medicine; author of Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End

From a public health perspective, few diseases are as devastating as dementia and Alzheimers. Yet I have seen firsthand that having the right daily care can make all the difference in the long-term success of each patient. This book provides the simple and professional steps any family can implement to make the life of their loved one more comfortable, more enjoyable, and less stressful, which is the key to better outcomes.

Takeisha C. Davis, MD, MPH, CEO, New Orleans East Hospital

We couldnt be prouder of Patricias excellent book. Caregiving with care is at the heart of what an LPN does, and sharing what we do best will vastly improve the life and health of anyone struggling with Alzheimers disease or dementia.

JoAnn Shaw, LPN, vice president, National Association of Licensed Practical/Licensed Vocational Nurses, Inc.

When I was first diagnosed with short-term dementia resulting from a pulmonary circulation disease, my wife and I were at a loss for how to move forward. Thankfully, our good friend Patricia Boswell was able to provide us with her best practices for home care, which I know are in this wonderful book. By putting Patricias advice to work, we were able to keep me safe at home until the dementia symptoms abated, without causing harm to me or burnout to my wife.

Emmette Em Bryant, NBA Legend for the New York Knicks, Boston Celtics, and Buffalo Braves

My wife Carols journey with Alzheimers disease was documented on 60 Minutes for over ten years, and even though I did my best as a caregiver, I wish I had this book during that time. Patricias insights and wisdom for taking care of a loved one, as well as the caregiver, will be a blessing and offer relief to so many families like ours.

Michael Daly

An imprint of Penguin Random House LLC

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Copyright 2022 by Patricia Boswell and Pamela Liflander

Images Gregory Jones, Jr.

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ISBN (trade paperback) 9780593330692

ISBN (ebook) 9780593330708

Cover design: Sarah Horgan

Cover image: Fahng_S / Shutterstock

Book design by Laura K. Corless, adapted for ebook by Estelle Malmed

Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consulting with your physician. All matters regarding your health require medical supervision. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book.

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To my parents, James and Helen Boswell

Caring is daring.

Caring is understanding while sometimes being misunderstood.

For those who have taken on the rainbow of this task, denial sits by us from time to time.

Yet the heart always attaches to the heart who needs us most.

While I may not always feel appreciated, I will be present for you with love and joy.

INTRODUCTION

The Right Caregiver Makes All the Difference

Ive always known that the right caregiver could make a difference, but I never thought it was a life-or-death decision until I had to force my way into my 82-year-old aunts life to take care of her, almost five years after her diagnosis of Alzheimers disease (AD). Even though my family knew full well that I was a home healthcare and hospice nurse, I wasnt asked to get involved until my aunt seemed to be on a total and complete downward spiral. The truth was, one of her sons, who lived close by, was in a deep state of denial and couldnt see how much help his mother really needed. The other son, who lived far away in Atlanta, finally intervened and contacted me out of desperation.

By the time my Atlanta cousin called me to intervene, my aunt was severely depressed, hallucinating, and unable to respond or engage in conversation. She had been in and out of the hospital six times over the previous year with urinary tract infections. Her new condominium wasnt fit for her to live in because her local son had never helped her unpack: she didnt have a proper couch or chair in the living room, or a decent table to take her meals. She was left to spend her days in a power bed watching television.

I started by straightening out her home and brought in the right furniture so that she would be safe and comfortable. This fix alone enabled her to get out of her bed and back to walking, which improved her mood. Then I had the kitchen and living room walls painted a cheerful yellow because it was her favorite color. In the bedroom I used a pale blue, which is thought to be calming for people with dementia. I decorated her bathroom in a darker blue so she would know that she was in a different room, and it would still have a soothing influence.

I asked to see her medical records, and found out that my local cousin wasnt keeping any, so I took out my LPN Daily Observation list and gave her a thorough exam. The first thing I noticed was her overgrown toenails. Toenails may not seem like a big issue, but I realized that if no one was monitoring her feet, it was quite likely that I would uncover other, more dangerous health issues brought on by a lack of care.

It took me five months to get my aunt back to real health and on a regular schedule of doctor appointments. I took her to see a podiatrist and found a primary care doctor who specialized in geriatric dementia care. She hadnt had a mammogram, chest X-ray, or MRI in years; her previous doctor hadnt recommended these tests because of her advanced age. Yet a mammogram showed that she had potentially cancerous nodules in her lymph nodes and needed to see an oncologist. If she hadnt had that mammogram, we would never have learned this information, and quite frankly, she might have died long ago.