Nothing prepares you for the onslaught of behaviors that comes with the middle stage of Alzheimer’s 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 wasn’t 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.

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 Alzheimer’s Disease

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 isn’t about Alzheimer’s Disease per se, but in so many ways it is all about Alzheimer’s 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 Alzheimer’s 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 didn’t 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.

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 son’s presence with a camera, but I felt, at the time, the bank might as well see him in all his glory as well.

• Tom, as usual, had planted his feet at the threshold to the bathroom and wouldn’t move over it. I was filmed tugging and pleading with him while he literally moaned from fear. Since not, bathing him, wasn’t a choice, my son and I picked him up and carried him in.
• Tom became more and more belligerent as I tried to undress him. By the time I got him into the shower we were headed for a catastrophic episode. He was striking out at me and ranting. Upon observing the tape later I realized he was facing the wall-to-wall mirror and all of his behaviors were directed toward it. The only time the activity stopped was when he was turned away from the mirror.
• I had no idea how loud our house was. I could hear the television throughout the tape. It was loud in order to be heard over the fan from the swamp cooler, which was also running. The street noises seemed louder inside than out. The water in the shower was running full blast and I was nearly shouting to be heard above the din. The sound was magnified by the highly tiled interior until it was nothing short of a torture chamber for someone with the auditory, visual and sensory problems my husband had.
• My body language translated as desperate, humiliated and angry at times, and my son’s attempts to help reflected his frustration and horror. The expression on Tom’s face was indescribable.

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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"I tried to imagine how an Alzheimer’s person interprets the noise that happens in the bathroom with hard tile walls and floors and the shower running full blast and a caregiver talking loudly in order to be heard over the running water.

They interpret the caregiver’s raised voice as shouting. Their clothes are being taken off and they interpret being moved under the shower as being shoved and manhandled. On top of that they are suddenly sprayed with water which may or may not be the temperature they can tolerate because sense of touch and temperature is also impaired. Strangers are crowded into the room with them and they can’t tell if they’re being observed or threatened or ridiculed. They have no way of knowing those aren’t other people at all but reflections in the mirror on the bathroom wall. They must feel terribly violated. They are bombarded with so many variables that it must at times seem like hell, and we wonder why bath time is traumatic. Better yet, we complain that the patient is combative."

…excerpt, "He Used to be Somebody, A Journey Into Alzheimer’s Through the Eyes of a Caregiver

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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 Alzheimer’s Disease does not! That reality is one of chaos where nothing is dependable.

• We can drive a car and tune out the speed of landscape going by, of telephone poles seeming to move towards us, and the changes in direction we must make, without becoming dizzy.

• We can sit in a restaurant and hold a conversation in the midst of a cacophony of noise, voices, and dishes rattling.
• We know what is a reflection in a mirror and what isn’t. We can tune out the multi-images that are actually reflected because our reality is that clear to us.
• We know a throw rug is just a rug and not a hole in the floor or an obstacle that must be avoided.
• We can look at a place mat patterned with birds or flowers and know they aren’t real.
• Our depth perception allows us to define our space and our brain registers an entire picture when we walk into a room. Depth perception is so compromised in the brain with Alzheimer’s that I’m not sure walls are even flat, and their world is seen in bits and pieces at best.

• I played music instead of the television during the day. Music enhanced movement and peace of mind. The voices, the sound effects and the visual bombardment of television only increases anxiety. I purchased a headset so that I could watch my programs without the volume on and sat where I could observe Tom peripherally during those shows.
• I made an effort to curtail all external noise when taking him into the bathroom, including my voice. I spoke to Tom in loving and supportive terms. Get the job done and get out of the bathroom as soon as possible.
• I realized why Tom froze at the white marble threshold to the bathroom. His sensory deficits left him unable to process the change from a carpeted floor to the cold bathroom floor on his bare feet, and the white marble slab created a visual barrier because of its contrasting color from the carpeting. I laid a terry bath sheet, the same color as the carpet, from the threshold to the shower stall. I faced him, holding both his hands and backed into the shower stall, giving him my face to concentrate on instead of the hostile interior of the room. The behavior stopped as a result.
• I removed the mirror in his bathroom. He didn’t need it anyway since I was the one shaving him by then and the mirror did nothing but exacerbate his visual hallucinations. Who knows what he thought he saw in the mirror, but watching an emaciated man being stripped of his clothing with what might have been a crowd of people present could not have been comforting on any level. I then removed or covered every mirror and other reflective surfaces throughout our living space except for the one bathroom now reserved for everyone but Tom’s use and my private space, where I went to wind down.
• I also realized that part of the problem with readying him for bed at night had to do with our windows reflecting what was going on in the room. They became mirrors at night. I made sure the shades were drawn before I took him into the room at night. His combativeness at night stopped.
• I scaled down his room, removing end tables, lamps and extraneous decorations. I left the bed and his dresser and installed track lighting with a dimmer switch. I also painted the woodwork and the doors the same color as the walls. The lack of stimulation in this room gave him a place where he could wind down and he often sought the room out on his own.
• I simplified our living space (including his bathroom) by removing clutter and by keeping his walk area free of throw rugs and things to trip over or break.

I recalled a conversation with a noted neurologist in Washington, D.C., who remarked that the person with Alzheimer’s 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 couldn’t 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 Alice’s looking glass and into Tom’s 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 isn’t 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 they’ve suffered. And make no mistake about this, Alzheimer’s Disease isn’t about ‘forgetting,’ it’s 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.

Additional Articles

- Bathing and Grooming Skill Builder
- Management of Agitation Behavior
- Preventing Falls
- Caregiver's Guide to Home Modification

Suggested Reading

- 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 Alzheimer’s Patients. Gwyther, Lisa P., Published by ADRDA and the American Health Care Association. Available from Alzheimer’s 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 Alzheimer’s Disease Through the Eyes of a Caregiver by Beverly Bigtree Murphy

This is the book I wrote about Tom’s and my life with Alzheimer’s. 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 Tom’s 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.