This review is submitted for W.O.W.’s (Women on Writing) Virtual Blog Tour of Ruth Dennis’ book MINDFUL DEMENTIA CARE – Lost and Found in the Alzheimer’s Forest
A book for adults of all ages!
It’s no secret that we live in a world where certain diseases seem to be epidemic and affect all of us at one time or another. Dementia and Cancer lead my personal list.
While Ruth Dennis, along with Velma Arllano and Luke Nachtrab who authored “Mindful Dementia Care,” are each undoubtedly familiar with the scholarly papers and scientific research written about the various branches of Dementia, they chose instead to educate us through story telling. I can think of no better way to humanize the many myths and misconceptions of Dementia than the choice they made to share personal stories.
Their collective experiences of working in the field (in addition to Dennis’s care-taking of her brother and being the Social Services Director of the Living Care Community), allowed them to share stories to help readers better understand those who suffer from dementia, as well as those who are their caretakers. In doing so, we learn to empathize and appreciate each in essentially profound ways that humanize both the patients and caregivers and arm us with the knowledge that we need if we are living with a loved one who has already been diagnosed or want to educate ourselves so that we will be prepared to make educated choices if and when we are confronted with having to make them before a crisis arises with someone we love.
In her introduction, Dennis states that she hopes “by sharing information and stories, this book will encourage all of us to celebrate HOPE for the people we love and examine questions and dreams for making the future better for elders, families and caregivers of all kinds.”
Her stated goal in sharing stories is “to help create a deeper and more balanced way to view and care to meet the heroic, creative, and incredibly strong people who both need and give care.”
Reminding us that one of the tenets of Buddhism is “the idea that we should seek to provide for ourselves in ways that improve the lives of the people and world that we all share. Making the choice to work in a field that provides care, creates safety, or encourages people is to begin a path of right livelihood by contributing to a viable, sustainable environment that adds LOVE to the world.” She concludes by adding that the need for care and giving of care are “core expressions of what it is to be human.” I couldn’t agree more, and she has definitely accomplished her goal by bringing to life the patients who suffer from various stages of dementia, along with all who are their caretakers.
Through her eyes and heart and the stories she shares, we are able to identify with and understand the absolute need for mindful care of dementia patients and their caretakers.
Discussed at length is the ecosystem of dementia: the cluster of symptoms common to this complex disease that often frustrates family members who, without understanding the disease, are unprepared to cope and/or make helpful decisions for their care.
Knowing about the inevitable changes that will take place in the brain better prepares us to be our best selves, absent of judgement and armed with skills.
THE ECOSYSTEM OF DEMENTIA includes the following cluster of symptoms:
- Emotional changes: increased anger, anxiety, depression
- Social withdrawal
- Increased fatigue and disrupted sleep
- Change in eating habits
- Decreased interest in exercise, hobbies, work, etc.
- Memory loss
- Decreased motor function
- Disinhibition, sexually or socially inappropriate behavior
- Cognitive decline
- Other physical issues as the disease progresses
Imagine, we are asked, what it really means to lose short-term memory. ”It is not that the person with progressive dementia forgets an event or something they were told; to them, it never happened . . . . the brain never recorded it.”
That’s a hard pill to swallow for any caretaker. It takes a great deal of patience and ultimately the belief that whatever the patient does recall – no matter how distorted it may be or not be at all – whatever has registered is still a part of what lives inside.
As with anyone who suffers from any mental disease, it’s our responsibility to meet the patient where the patient is in his/her reality. With dementia, why elders wander (often in the evening); what sundowning is about (A response to the challenging light as evening approaches); what bathroom blues and white knuckle functioning implies: (Incontinence and needing help with personal hygiene); shadowing (The lack of short-term memory which often results in when not seeing someone, that person has been gone forever) and in the final stages of twilight:(When the body and brain can no longer communicate.)
Yet. While dementia takes away so many things, Dennis’s greatest contribution to our understanding is her belief that LOVE, CREATIVITY, WISDOM, HUMOR, and KINDNESS remain.
Some 15 yrs. ago, I visited a dear friend in an upscale Home for the Elderly where many of the patients were in various stages of dementia.
At the time, my friend’s wife was still living independently at their home and visiting him daily. She had been invited to a family wedding out of state and not wanting her husband to be without any visitor for the weekend, she asked if I would agree to visit him. Since I knew how much she needed some time off, and he was my friend, as well, I, of course, agreed.
As his decline had been very rapid, I had not yet seen him at the Home. All that I knew was that it was no longer safe for him to be at home, the leading cause being his having wandered off too often.
On the day when I visited, I was told that he was waiting in one of their large social rooms.
Although I am a trained psychotherapist and addictions counselor, I had not yet treated nor been in the presence of anyone who suffered from dementia. My knowledge was textbook and not personal. I was prepared for constant repetition of questions and some short-term memory loss. Beyond that, I didn’t know what to expect.
When I spotted him, he was seated at a small table facing the ocean. As always, he was immaculate, looked spiffy and as dapper as ever. As I approached, he greeted me politely and offered me a seat at his table. I kissed him on the cheek and told him how nice it was to see him, not realizing that he didn’t know who I was or that he thought I was someone else. The first thing he asked was how my parents were, and since he had never known my parents, who were long since deceased, I was definitely beginning to feel terribly sad and very concerned. The man I was with was no longer the man I knew. Instead of answering him about how my parents were, I mentioned that his sweater was my favorite shade of blue, and commented on how lovely the sun’s rays were as they bounced off the ocean’s waves. He agreed by nodding and after some meaningless small talk about nothing in particular, he stood up and invited me into another room where he wanted me to meet some of his friends. Walking alongside him, he asked me rather matter of factly if I knew that he was no longer married to Gloria but was now married to John, a staff member who played cards with him and whom he apparently felt very warmly toward. I was in shock and left within minutes, apologizing for not being able to stay longer. He thanked me – whoever he thought I was – for coming and kissed me good-bye.
I couldn’t get to my car quickly enough. I needed privacy to weep. I had no words to explain what I had experienced – a friend who had known me for years now no longer knew who I was and was no longer the man I knew. Yet he looked the same. He spoke clearly, though not sensibly and most confusing of all, he seemed to inhabit another world, one that was as foreign to me as it seemed comfortable to him.
Had Ruth Dennis’s book been available back then, I would have been aware of the various stages of dementia, and had my knowledge gone beyond just assuming he might repeat himself often or would have some short-term memory loss, I would have understood what his reality of the moment may have been about. I would not have taken any of it personally, feeling sad that he no longer knew who I was, and I would have been happy, in fact, to see him looking so well and expressing so much care, even love, for someone at the Home to whom he believed he was married, at least for that day.
Facts and knowledge can be as frightening as ignorance, but they are also powerful and freeing in many ways.
Two years ago, my husband and I visited one of our most beloved friends, a renowned social worker who had co-edited a marvelous book on Ethnicity and Family Therapy. He was the life of any party and a dear, kind, and loving father and step-father. He was also in the throes of dementia and probably had Parkinson’s disease. Luckily for us, he was still able to carry on short conversations and most impressive of all – though he was unsteady on his feet – his wife showed us some sculpture that he had recently created. He had never before been an artist, but when he expressed a desire to sculpt, his wife drove him twice a week to a class in sculpting, Noticing the joy it gave him to create from clay what few of us could ever create, she drove him to the studio and waited for him until he tired and was ready to leave,
Not so ironically, all of his sculptures were of people in motion – something he had great trouble navigating himself — and yet his unconscious chose to create those who could move: dancers, runners, birds flying. One was more beautiful than the other. Here, too, Dennis writes about people with dementia who become artists in various stages of the disease. The brain is a fascinating part of how we let ourselves know who we are and how we share that part of ourselves with the world. So, here, too, I experienced what Dennis writes about: the love of his wife allowed him to get in touch with a new love in his life, the art of sculpting. A visibly obvious LOVE that was, indeed, profound.
Dispelling myths and allowing us to treat people we love with love no matter what stage of a disease they may be in is a gift we owe to them and to ourselves.
Thanks to Dennis, Arellano, and Nachtrab, the tools are now available to us!
* I give this book 5 stars! I think it’s a must read for all of us at any age.
Written on the back cover of the book is a perfect synopsis: “Mindful Dementia Care is a book of stories and a book of love. It is a book without denial, without any papering over the challenges that can be involved with being a caregiver, and the sadness, anger, and frustration they may bring. It is also a life-changing source of information that can revolutionize relationships with one of the most vulnerable populations in our midst.
In her decades as a caregiver, Ruth Dennis witnessed the tragic results of the medicalized and institutionalized way of caring for people with dementia. And equally clearly, she saw a better way. Mindful Dementia Care illustrates alternative methods for making a difference and achieving results through care that honors the whole person. The key is creating an environment with countless enriching touchstones to the inner person through facilities that are filled with art, animal companions, music, dance, books, laughter, and wholesome food. It is an approach that embraces creative and artistic processes to shape a more loving, spiritual approach for elders and their families.
Print Length: 142 pages
Publisher: Golden Word Books (February 19, 2019)
Publication Date: February 19, 2019
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