Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease

by Joanne Koenig-Coste Narrated by Jane Oppenheimer

Overview

“A true godsend to anyone caring for those afflicted with dementia.”-Rudolph E. Tanzi, coauthor of Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease

Revolutionizing the way we perceive and live with Alzheimer's, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between carepartners and patients and has proven successful with thousands of people living with dementia.

Learning to Speak Alzheimer's also offers hundreds of practical tips, including how to
-Cope with the diagnosis and adjust to the disease's progression
-Help the patient talk about the illness
-Face the issue of driving
-Make meals and bath times as pleasant as possible
-Adjust room design for the patient's comfort
-Deal with wandering, paranoia, and aggression

Editorial Reviews

Library Journal

After a major stroke left her husband paralyzed, unable to speak, and with significant progressive memory loss, Coste became his caregiver while raising four children. Refusing to institutionalize him, she developed a humanistic approach to caregiving ("habilitation") that focuses on enhancing the individual's remaining functional, intellectual, emotional, and spiritual abilities by creating a positive atmosphere that promotes feelings of success. Key elements of Coste's approach include simplifying the environment for the patient, capitalizing on his or her remaining skills, and making an effort to understand what life must be like for the memory impaired. Because such Alzheimer's behaviors as agitation and physical aggression are often rooted in frustration, she also offers caregivers techniques to help patients compensate for cognitive and sensory losses. Such methods include devising a daily routine filled with activities, physical exercise, snacks, and chores to reduce difficult behaviors and promote a good night's sleep. Directions for simple activities, recipes for nutritious "finger foods," and tips for hiring home caregivers are included. The level of care and involvement Coste describes is intense and may not be practical for all caregivers, but most activities can be modified to fit individual situations. A fine addition to Alzheimer's and caregiving collections. [Previewed in Prepub Alert, LJ 7/03.] Copyright 2003 Reed Business Information.

Product Details

BN ID:	2940160442792
Publisher:	HarperCollins
Publication date:	09/10/2024
Edition description:	Unabridged

Read an Excerpt

1

The Ticking Meter

My head feels like an old depot, worn by time and tears.
No more locomotives passing through, café filled with tales and baggage.
The old depot’s barren now.
There has been a great brain robbery.

One cool spring day in 1971, the kind that makes New Englanders smile at each other, I was driving with my husband down the main street of a small coastal town south of Boston. I spotted a parking space in front of our destination, a café where we dined frequently, sharing chowder, fried clams, gigantic iced teas, and dreams of the future.
I told my husband, “Look, there’s a parking space. Not only that — there’s money in the meter.” “I’m glad,” he murmured, seeking my eyes through his sunglasses. “But I think my meter is running out.” His metaphor fell on deaf ears. With a new life growing inside me — our fourth child — I may have been unwilling to accept his meaning.
At the time my husband’s lapses in memory seemed innocuous. He might forget a neighbor’s name or neglect to stop at the store or forget where the ignition was in the car, but I was clever at disregarding the hints of medical illness. After all, he frequently drove different cars as part of his advertising business, and he was so busy; keeping up with minor details was too much to expect. The situation will improve when we move into a new house, I told myself, or when the children are older, or when someone in the medical community will listen to what I am saying.
We moved, the children grew, and the improvement never happened. We were near financial ruin.Customers weren’t calling us back; new jobs weren’t coming our way. He had ever greater difficulty focusing and organizing his thoughts, sometimes rewriting ad copy he had finished the day before. Once so gentle, docile, and fun to be around, he became frustrated and angry. My mantra continued whenever I was awake: “Things will be so much better when —” When?
Our journey into the world of dementia began in 1971, when no guideposts, advocates, manuals, or support groups were available to help us. The National Alzheimer’s Association would not be organized for another decade. My husband was only in his forties, and I did not believe that his forgetfulness was a natural part of aging. The children chided their father occasionally about his “absent-mindedness” but seemed to see nothing deeper. The prescription for Valium to treat his supposed “depression” was refilled many times. And sometimes my husband unwittingly doubled the dose or forgot to take it at all.
Always well dressed in the past, my handsome, athletic husband began to need help matching his suit, tie, and shirt. I started to lay out his clothes for the next day before we went to bed at night. I made sure to tell him what fun I had selecting the outfits, but I was embarrassed to be doing this task. I never mentioned it to others.
Then in 1973, a major stroke paralyzed him on one side, and I replaced the Brooks Brothers suits with sweatsuits, which he soon stained with food. The stroke took away his language ability, transforming a man who had made his living through eloquent writing into someone who had to rely entirely on words of one syllable. Neurologists and physical therapists told me not to expect any improvements in his speech though he did learn to walk again, ever so slowly, with a leg brace and a walker. Life was very hard for all of us, but it was especially horrible for my husband. He became frustrated beyond comprehension.
At times he did not seem to recognize our children or me. Sometimes he appeared thoroughly perplexed about our home. I remember him angrily rattling the doorknob in an effort to go outside but not being able to open the door. And yet I also recall his having enough of his former self that when he looked at our young baby, tears would run down his face.
His abilities continued to decline. As soon as I became the least bit comfortable with his current condition, he would take another step in the downhill progression of dementia. I felt completely overwhelmed. At times I was diapering both our youngest child and my husband. There’s no way I can do this, I would think to myself.
Finally things came to a head. My husband kept opening the door to go outside — as if to escape from what was happening to him — and my toddler would follow him out. Soon our son started trying to open the door and walk out on his own (this was before safety devices were so readily available). I realized I had to act — proactively, positively, and immediately, before my husband and son left home and got lost. I installed a new handle higher on the door, leaving the old knob intact but disabled. My son could no longer rreach the door. More incredibly to me, my husband didn’t understand the concept of the new handle: he would repeatedly go over to the door, try the olddddd knob, and think that the door was broken.
This tiny event made me realize that I could make some changes in the way we were living. I could stop walking on eggshells, in fear of what would happen next, and start making a positive difference in our surroundings and in my approach to his illness. I’m a very competitive person, and I started thinking of the entire situation as a game — a brand-new game I wanted to win. I knew I had to get suited up and be ready to play. Each daily task — eating, dressing, toileting, everything — was a new inning, a new round in this game.
I stopped making excuses for the changes in his behavior and the decline in his cognitive functions. The neurologist had told me that my husband’s disease was progressive and would be fatal — and in an odd way, that knowledge helped me. It gave me the energy I needed to cope with what he and I both faced, because I knew that the situation would not go on forever.
I vowed to learn to live with this person who was inhabiting the body of the man I cherished. I had to detach myself emotionally from the man my husband used to be and live now with the man he had become. The task at hand — this minute, and every minute of every day — was to ensure my family’s survival; I couldn’t waste time focusing on my lot in life. I had to deal with the reality of today.
I decided not to heed the hospital social workers who told me that my husband would be “fine” if he went to live at an institution for the mentally ill or at a nursing home for the elderly, where he would be with others suffering from dementia. In that era, I did not trust that hospital and nursing- home workers would try to connect with him. And I knew that if he stayed at home, I could still reach parts of this man. A great deal of the time, his emotions seemed akin to mine. If I can reach him on an emotional level, I thought, instead of on a verbal or cognitive one, maybe life can be less threatening and frustrating for him.
I started a two-part list of issues related to his illness. Those elements that I thought could be changed, ameliorated, or implemented I put in part one. The elements that no amount of concentrated effort could ever change I listed in part two. I wrote “improved mobility” on the first list, while I relegated “return of speech” to the second. I placed “daily laughter” on the list of goals that could be implemented and “planting the garden” on the list of those that could not. Eventually my lists filled a spiral-bound notebook, with several hundred entries.
After putting into practice the ideas and goals on the first list,