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By ETHEL M. SHARP
© St. Petersburg Times, published January 30, 2001
It is said we all have our songs to sing. There may not be words to our songs or even music. Sometimes we sing them silently and happily in our hearts. At other times, we may sing them confidently, quietly, anxiously, even fearfully, to ourselves. One thing is sure: Our songs are uniquely ours, and our lives sing our songs for all to hear.
Many people familiar with today's music hold up recording superstars as their heroes, persons to follow and emulate. I have had the good fortune of being with some real heroes, Alzheimer's caregivers, and listening to them sing their songs through the example of their lives. The music is sweet.
It's astounding just to think that more than 70 percent of the 4-million Alzheimer's victims remain at home. Families are bearing most of the burden of caring for a spouse, parent or relative who eventually will need round-the-clock attention. The stress on the caregiver can be financially, emotionally and physically devastating.
The German psychiatrist Alois Alzheimer defined and described this progressive and degenerative disease in 1906, after having done case studies. Then, Alzheimer's was rare. The life expectancy at the time was only about 47; many people died too young to be affected by the disease.
Over the years, our life expectancy has risen dramatically, to approximately 78; one in five of those ages 75 to 85 and nearly half of those older than 85 are afflicted. There have been many critical discoveries about how Alzheimer's destroys the brain, but we have learned more about the disease in the past 15 years than in the other years since its description.
It is important for us to realize that Alzheimer's disease is neither inevitable nor a normal part of aging. Forgetting where you put your car keys is not Alzheimer's. Memory loss can come with stress, medications, trauma, depression, physical illness and surgery. Or perhaps you just weren't concentrating at the time.
If you suspect a loved one has Alzheimer's, then he or she needs to be tested to rule out different kinds of dementia, many of which are treatable or curable. It's important to go through a special diagnostic program to evaluate the physical, psychological and neurological well-being of your loved one.
The disease affects a person's ability to think, communicate and perform the basic activities of daily living, so the emotions, stress and pressure run high for you as the caregiver. Trying to cope with everyday work, plus the behaviors that are so different, plus watching your loved one decline, can be emotionally wearing and devastating.
As caregivers, you can spend many days being so absorbed in trying to cope with meaningful communication and companionship that you fail to realize the great personal love loss you're experiencing and the ongoing grief that comes with it. To let go of the personal relationship that you had and the expectations of it is no easy matter. Nonetheless, it needs to be acknowledged, talked about and discussed in a support group.
As Alzheimer's affects the caregiver's life, the emotions are devastating for those with the disease as well. They struggle with the activities of daily living, trying to cope and adjust to many changes going on within themselves. Like the rest of us, they experience joy, sadness, anger and fear. Their anxiety can result from not recognizing a person, being confused in a new environment or realizing they can't finish a sentence, and knowing their own forgetfulness.
Caregivers and other family members need to recognize their loved ones' feelings and learn how to respond properly. Understand their reactions to the effects of this disease and continuously convey a positive, supportive, hope-filled and upbeat message about their lives. This takes patience, sensitivity and a sense of humor but allows the person with Alzheimer's to feel respected, valued and worthwhile.
When we try to develop plans of response, we are able to approach the Alzheimer's patient with a more positive, reassuring and optimistic attitude. This in itself helps to comfort and release tensions with your loved one and within yourself.
Our plan can be to adjust to the person by gentle words, tone and touch, and by communicating slowly, calmly and simply using short sentences, one message at a time, without too much detail. Always prepare and announce to your loved one what is about to happen. Again, plan a simple sentence to allow the person to know what to expect in a very reassuring way. Too much, too fast, too complicated is confusing. Learn respectful messaging along with much praise for any simple success or achievement.
I've been with families where there was much too much attempt at repeatedly explaining the way things really are. When we try to control and argue about facts, it's frustrating. This "reality" approach in which the Alzheimer's person is continuously corrected has proven only to be very frustrating for all in the family.
Give your loved one and yourself a break by having a new plan of approach and adopting new skills. Health-care facilities and professionals have moved away from "reality orientation" because it causes the Alzheimer's patient to withdraw and become hostile. It has proven to create combativeness, it antagonizes your loved one, and it is extremely frustrating for you as caregiver.
Many caregivers have learned the technique called "validation." This teaches caregivers to be accepting of the person's own version of reality without trying to reason or disagree with them. It works to eliminate arguments. There are many ways to comfort your family member and spare him unnecessary emotional upset.
The diversified approach also is instrumental in comforting through distractions such as gently changing the subject, starting to reminisce, telling a funny story, talking about a favorite food or having a magazine at hand and pointing out a lovely picture. You can always go for a walk.
People with Alzheimer's can become increasingly agitated, suspicious or disoriented in the late afternoon or early evening when the phenomenon known as sundowning kicks in. Some may tire at the end of the day and can't cope very well. Others may be bored if the day was not stimulating enough: Perhaps the person needs some exercise with several walks during the day. Maybe it's a matter of eating an earlier dinner or having a snack in the afternoon. Light in the rooms can be helpful to eliminate frightening shadows and confusion.
One man told me his wife saw and heard things that were not there and believed that things happened that didn't. She would wander around the house and become agitated until he turned on some soft music, and they would slow dance to Big Band tunes.
Try to promote communication without negativism and enable your loved one to feel involved.
To foster true dignity in the Alzheimer's person may mean giving yourself permission to alter any situation or conversation in order to build a sense of connection and to give reassuring comfort to your loved one.
With so many things happening, it's easy to see why, as a caregiver, you must seek relief from your own stresses. As many as one-third of caregivers suffer from serious depression. Learn to recognize signs of stress in yourself such as exhaustion, anger, social withdrawal, anxiety, irritability, lack of concentration, sleeplessness or poor appetite. Talk to your doctor about these stress symptoms.
You must take care of yourself. You are only human, so don't be hard on yourself. No one is perfect. Begin now to plan, and start gathering information on long-term care facilities. In the meantime, look into day-care centers for your loved one, and please join a support group so you can make friends, express your feelings and know you are not alone.
Caregivers make the present moment count.
- Ethel M. Sharp is executive director of Aging Matters Inc., a non-profit network for family caregivers and elder care. You can write to her c/o Seniority, the St. Petersburg Times, P.O. Box 1121, St. Petersburg, FL 33731. When seeking more information, please enclose a stamped, self-addressed envelope and include your telephone number, with area code.