Reflections on Reflections: Bathing and Alzheimer's Disease
by Beverly Bigtree Murphy, MS, CRC, Caregiver
More About Beverly
Nothing prepares you for the onslaught of behaviors that comes with the middle stage of Alzheimers Disease. Ten years ago when my husband, Tom, entered that stage I was offered very little insight into why the behaviors were happening. Of course I read the material available but it just scratched the surface of what we were facing. For example, I read that Tom would develop problems with dressing. What wasnt explained is that his inability to handle his clothing would limit his independence and my independence in ways I never imagined and the deterioration going on elsewhere in his brain would compound that task geometrically.
How do you help someone dress who is unable to follow even simple directions or move their arms and legs in ways that facilitate your helping them? Leaving a zipper undone is almost insignificant.
The time arrived when getting Tom bathed and in and out of hisclothes was a full-time job, which also complicated his hygiene care. He was belligerent as well as confused, he wasnt sleeping, which meant that I wasnt sleeping, and the constant repeating of questions and comments was literally driving me crazy.
In spite of the insanity I rejected the notion that Tom was just forgetting how to do things because every now and then clarity would surface. It was more like his brain was taking away the ability to organize and retrieve information that was still there. In any event, the process was very complex, the losses appeared to be inter-related and I needed some understanding of what was happening to his brain before I could even begin to deal with his needs.
Understanding Brain Changes in Alzheimers Disease
We found a neurologist who was willing to work with us. She understood why I needed to find ways to work with his problems and why my wishes werent a sign of my impending insanity. We began a relationship that lasted through Toms death and one that can only be described as a team effort on Toms behalf. The first thing she did was suggest I read: "The Man Who Mistook His Wife for a Hat,"by Dr. Oliver Sacks, the researcher and author of "Awakenings." This turned out to be the first of two events that were pivotal to helping me survive Toms illness. It was an epiphany of sorts and it gave me back my life.
First: "The Man Who Mistook His Wife for a Hat," is a series of case studies of patients with somewhat unusual neurological problems, some the result of injury or stroke, some the result of tumors, or disease. The book isnt about Alzheimers Disease per se, but in so many ways it is all about Alzheimers Disease. For the first time, deficits such as visual agnosia, apraxia, aphasia, and auditory agnosia, all of which can be manifested as symptoms resulting from Alzheimers Disease, took on meaning in real life terms. I not only gained a frame of reference to the developing behaviors, I gained a new way of looking at them.
As just one example, Tom once remarked that he didnt know where his hands were anymore. The section titled "The Disembodied Lady," is about a woman whose brain lost connection with her body. After great effort she was able to walk again, but she had to look at her limbs and mentally go through the process of walking in order to do so. If her gaze or thought process wandered she would collapse. I now understood why Tom had so much difficulty dressing. How do hands and fingers function if the brain is losing the ability to find them or then direct the movement in the proper sequence? I understood why Tom could hold a full glass of juice and use it properly to drink and then drop it on the floor as soon as his attention was diverted from the glass.
Second:I decided to make a video tape of the problems I was facing getting Tom bathed, changed, bedded down for the night, and fed. The bank that handled Toms trust fund didnt want to authorize the alterations I needed in the house that were essential to keeping Tom home. I decided a video would graphically demonstrate the problems we faced. As it turned out, I never showed the tape to the bank, but the insight I gained from watching it myself was invaluable to me. As for the bank, they acquiesced once they realized I wasnt going to go away.
My son arrived on the appointed day and followed us around with his camera. Tom threw a catastrophic episode during his shower that morning and repeated the performance at bedtime. My son was in shock since this was the first time he had seen Tom in all his glory. I was sleep deprived myself and embarrassed to have my son witness the reality of our life. It occurred to me that Tom might be distressed at my sons presence with a camera, but I felt, at the time, the bank might as well see him in all his glory as well.
What I observed in this tape was the world in which Tom lived and it was a very frightening place indeed for someone like my husband. No wonder Tom was distressed.
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A normal brain filters the detritus of sound, and vision, and touch, that interferes with our focus and in a very real sense our reality. The brain with Alzheimers Disease does not! That reality is one of chaos where nothing is dependable.
Changes I Made and How They Helped
I recalled a conversation with a noted neurologist in Washington, D.C., who remarked that the person with Alzheimers Disease needed to constantly redefine his surroundings. All that reaching and touching and shuffling was their way of identifying their boundaries, and since their memory couldnt hold on to the information it received, the process had to be repeated over and over. Perhaps there actually was method to all the madness.
Through the Looking Glass
I had to step through Alices looking glass and into Toms world.
I became an observer of Tom and I began to see his behaviors in terms of puzzles that needed to be solved. I also developed a deeper understanding of the world in which Tom lived and realized it was absolutely futile for me to try to keep Tom in my world.
Too often we confuse the concept of their dignity with insisting on behavior that isnt possible anymore. There is no dignity is forcing someone to eat unaided or take care of their own hygiene when it is clearly impossible given the brain damage theyve suffered. And make no mistake about this, Alzheimers Disease isnt about forgetting, its about progressive brain damage that will end in the death of the brain. When the brain dies, we die.
The only thing that made any sense was to allow Tom to live in his world unencumbered by my memories of how he used to be and to accept that my reality was no longer his reality.
And that made all the difference.
- Awakenings. Sacks, Oliver, New York. Harper Perennial, 1973
The case histories of his encephalitis lethargica patients helped me to understand better, the relationship of my husband's environment to the behaviors his form of brain damage imposed upon him. This book also has a glossary of neurological terms defined in understandable English. I'd recommend this book for that alone were it not for the quality of the rest of the content.
- Care of Alzheimers Patients. Gwyther, Lisa P., Published by ADRDA and the American Health Care Association. Available from Alzheimers Association chapters in paperback.
- Rhythmic Medicine: Music with a Purpose. Janalea Hoffman, Jamillan Press, P.O. Box 6431, Leawood, KS 1995. (Available from Amazon.com but delivery may take 4-6 weeks)
Janalea was one of the first young American musician/composers to look into the powers of the 50/60-beats-per-minute music. Her tapes and CDs facilitate, among other things, relaxation and body awareness; ease insomnia; and reduce blood pressure. Her primary interest lies in how music affects our bodies physiologically, in developing specific techniques for using music to help lower heart rate and blood pressures, and helping to alleviate pain. I met her at an education conference on Alzheimer's Disease and was truly impressed by her work with Alzheimer's patients. She contends that it is the steadiness of the beat and the body's natural instinctual need to match the heart beat with the beat of the music that holds the key to how music soothes and relaxes. This is so important for Alzheimer's patients.
- He Used to Be Somebody: A Journey Through Alzheimers Disease Through the Eyes of a Caregiver by Beverly Bigtree Murphy
This is the book I wrote about Toms and my life with Alzheimers. Although it is in narrative form it is also a case study of a disease process. It shares how I worked with the symptoms and found viable solutions to our problems. My 25 years as a Rehabilitation Counselor allowed me to view Toms needs in terms of working with what was left of his abilities instead of dwelling on what was lost. I hope this outlook will help others facing this particular challenge. I was able to keep Tom home through the duration of his illness and it that respect this is the only book that deals exclusively with home care issues.
- The Complete Guide to Alzheimer's-Proofing Your Home by Mark Warner
This book is a must for caregivers and professionals facing the challenges of Alzheimer's. It is the first book I've read, devoted to Alzheimer's care, that offers something more than reasons to institutionalize our people. Caregivers need information, options and where to access tools and resources before they can make informed decisions about their choices or their role as caregiver. This volume speaks of caregiving in positive, life giving, do-able terms and not the drudgery that we are all led to believe consumes the process. It focuses on the continued humanity and needs of our family members for love and regard in spite of their loss of cognitive skills.
- The Man Who Mistook His Wife For A Hat, and Other Clinical Tales.
Sacks, Oliver. New York. Harper & Row Publishers, 1970.
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