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.
-Joanne Koenig Coste
From "Learning to Speak Alzheimer's," by Joanne Koenig Coste:
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 run out."
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.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.
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.
The following are the tenet that I developed, first for my own use at home and later for the use of other patients with dementias:
1. Make the Physical Environment work. Simplify the environment. Accommodate perceptual loss by eliminating distractions.
2. Know that Communication Remains Possible. Remember that the emotion behind failing words is far more important than the words themselves and needs to be validated. Although many losses occur with this disease, assume that the patient can still register feelings that matter.
3. Focus Only on Remaining Skills. Value what abilities remain. Help the patient compensate for any lost abilities without bringing them to his or her attention.
4. Live in the Patient's World. Never question, chastise, or try to reason with the patient. Join her in her current "place" or time, wherever that may be, and find joy with her there.
5. Enrich the Patient's Life. Crete moments for success; eliminate possible moments of failure, and praise frequently and with sincerity. Attempt to find humor wherever possible.
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