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What Caregivers Can Do

“I HAVE always been amazed at how different [people] are in their ability to cope,” says Margaret, a medical professional from Australia who has dealt with Alzheimer’s patients and their carers for many years. “Some families are able to manage with the most incredible demands placed on them,” she continues, “while others are rendered almost incapable of dealing with the situation as soon as the person exhibits the slightest change in their personality.”—Quoted in the book When I Grow Too Old to Dream.

What is it that makes the difference? One factor can be the quality of the relationship that existed before the onset of the disease. Families with a close, loving relationship may find it easier to cope. And when a person with Alzheimer’s disease (AD) is well cared for, the disease may be easier to manage.

In spite of declining intellectual abilities, sufferers usually respond to love and tenderness right up to the final stages of the disease. “Words,” points out the advice sheet Communication, produced by the Alzheimer’s Disease Society of London, “are not the only means of communicating.” Nonverbal communication essential to caregivers includes a warm, friendly facial expression and a mild tone of voice. Also important is eye contact as well as clear, steady speech and frequent use of the patient’s name.

“Not only is maintaining communication with your loved one possible,” says Kathy, mentioned in the preceding article, “but it is also important. Warm and affectionate physical contact, a mild tone of voice and, actually, your physical presence all provide security and reassurance for your loved one.” The Alzheimer’s Disease Society of London sums up by saying: “Affection can help you to keep close, particularly when conversation becomes more difficult. Holding the person’s hand, sitting with an arm round them, talking in a soothing voice or giving them a hug are all ways of showing that you still care.”

Where a warm relationship exists, caregiver and patient can often have a good laugh together even when mistakes are made. For example, one husband recalls how his mentally confused wife made the bed but mistakenly put the blanket between the sheets. They discovered the mistake when they went to bed that night. “Oh dear!” she said, “I’ve been silly.” And they both had a good laugh.

Keep Life Simple

AD sufferers function best in familiar surroundings. They also need a regular daily routine. To this end, a large calendar with daily appointments clearly marked on it is very helpful. “Moving someone from their usual environment,” explains Dr. Gerry Bennett, “can have dreadful consequences. Sameness and continuity are very important for the confused person.”

As the disease develops, AD sufferers find it more difficult to respond to instructions. Directions have to be given in a simple, clear way. For example, telling a patient to get dressed may be too complex. The items of clothing may have to be put out in order and the patient helped one step at a time with each item of clothing.

The Need to Keep Active

Some AD sufferers pace about or wander away from their home and get lost. Pacing is a good form of exercise for the patient and may help to reduce tension and improve sleep. However, wandering away from home can be dangerous. The book Alzheimer’s—Caring for Your Loved One, Caring for Yourself explains: “If your loved one wanders away, you are faced with an emergency situation that could easily turn to tragedy. The phrase to remember is don’t panic. . . . Search parties need a description of the person they’re looking for. Have some recent colour photographs at home.”a

On the other hand, some sufferers become lethargic and may just want to sit down all day. Try to get them to do something that you can both enjoy. Get them to sing, whistle, or play a musical instrument. Some enjoy clapping, moving, or dancing to favorite music. Dr. Carmel Sheridan explains: “The most successful activity for people with A.D. is usually one which incorporates music. Families often comment that long after the meaning of other [things] have been forgotten, their relative still enjoys old familiar songs and melodies.”

“I Wanted to Do It”

A South African wife whose husband was in the final stages of AD enjoyed spending every day with him in the nursing home. However, well-meaning family members criticized her for doing this. Perhaps it seemed to them that she was wasting her time, since her husband didn’t seem to recognize her and never said a word. “Nevertheless,” she explained after his death, “I wanted to sit with him. The nurses were very busy, so when he dirtied himself, I could wash and change him. I enjoyed it—I wanted to do it. Once, he hurt his foot while I was pushing him in a wheelchair. I said, ‘Does it hurt?’ and he answered, ‘Of course!’ Then I realized that he could still feel and talk.”

Even in cases where a good family relationship did not exist before the onset of AD, caregivers have still been able to cope.b Just knowing that they are doing what is right and what is pleasing to God can give them a deep feeling of satisfaction. The Bible says, ‘Show consideration for an old man’ and, “Do not despise your mother just because she has grown old.” (Leviticus 19:32; Proverbs 23:22) Furthermore, Christians are commanded: “If any widow has children or grandchildren, let these learn first to practice godly devotion in their own household and to keep paying a due compensation to their parents and grandparents, for this is acceptable in God’s sight. Certainly if anyone does not provide for those who are his own, and especially for those who are members of his household, he has disowned the faith and is worse than a person without faith.”—1 Timothy 5:4, 8.

With God’s help, many caregivers have been able to do a commendable job in caring for sick relatives, including those who suffer from Alzheimer’s disease.

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Alzheimer’s Disease and Medication

ALTHOUGH about 200 possible treatments for Alzheimer’s disease (AD) are currently being tested, there is not yet a cure for AD. Some drugs reportedly alleviate memory loss for a while in the early stages of AD or slow down the progression of the disease in some patients. Caution is in order, however, because these drugs are not effective in all patients, and some can cause damage. Other medications, however, are sometimes used in treating conditions that often accompany AD, such as depression, anxiety, and sleeplessness. In consultation with the patient’s doctor, each family can weigh the benefits and risks of a treatment before making a decision.

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How Visitors Can Help

BECAUSE of failing intellectual abilities, those who have Alzheimer’s disease (AD) are usually not able to discuss current events in depth. However, talking about the past may be different. Long-term memory may stay relatively intact, especially in the early stages of the illness. Many AD sufferers enjoy reminiscing about their past. So invite them to relate some of their favorite stories, even if you have heard them many times before. You thereby contribute to the patient’s happiness. At the same time, you may be giving the regular caregiver a much needed break. In fact, offering to care for the patient for a period of time, perhaps a whole day, can do much to refresh the regular caregiver.

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Coping With Incontinence

ALTHOUGH incontinence may “seem like the last straw,” says the advice sheet Incontinence, “there are things that can be done either to alleviate the problem itself or to make it less stressful.” Keep in mind that the patient may not be permanently incontinent; he may have simply got confused or been too slow in getting to the toilet. Moreover, the patient may be suffering from a treatable condition that is causing temporary incontinence, so you may need to consult a doctor.

Whatever the cause, incontinence can be much easier to handle if the patient wears outer clothes that are easy to put on and take off as well as specially adapted pants. It will also help if you put protective pads on beds and chairs. Avoid skin irritation and soreness by not having plastic in contact with the patient’s skin. Also, wash the patient well with warm, soapy water, and dry him thoroughly before dressing him. Remove obstacles that might hinder the sufferer from getting quickly and safely to the toilet. It may be helpful to leave a night-light on so that he can find his way. Because the patient may be unsteady at this stage, a conveniently placed grab bar will make a visit to the toilet less daunting for him.

“If you can introduce some humour too,” suggests the Alzheimer’s Disease Society of London, “it may relieve the tension.” How can a caregiver meet these challenges? One experienced caregiver replies: “Patience, gentleness, kindness, and the sort of quiet courtesy which will enable the patient to maintain his dignity at all times, without fear of embarrassment or shame.”

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Should the Patient Be Moved?

SADLY, the deteriorating condition of people with Alzheimer’s disease (AD) may require that they be moved from their own home into a relative’s home or into a nursing home. However, before the decision is made to move a patient from familiar surroundings, some important factors should be considered.

Serious disorientation can result from a move. Dr. Gerry Bennett gives an example of a patient who used to wander about and sometimes get lost. Still, she managed to live on her own. Her family, however, decided that she should move to an apartment closer to them so that they could give better supervision.

“Unfortunately,” explains Dr. Bennett, “she never accepted the new place as home. . . . Sadly she never settled, and indeed was made far more dependent because she no longer could function in her new environment. The kitchen was strange, and she could not remember the new way to the toilet and became incontinent. From the best motives came a personal disaster and the eventual outcome was institutional care.”—Alzheimer’s Disease and Other Confusional States.

However, what if there seems to be no alternative but to move the patient into a health-care facility? This certainly is not an easy decision. In fact, it is described as “one of the most guilt-producing” decisions facing caregivers, often making them feel that they have failed and have abandoned their loved one.

“This is a normal reaction,” says one nurse with extensive experience in treating AD patients, “but an unnecessary sense of guilt.” Why? “Because,” she replies, “[the patient’s] care and safety would be the most important consideration.” Doctors Oliver and Bock agree: “The decision that one’s own emotional resources have been exhausted and that the disease has progressed beyond the point of home care is probably the hardest one to make.” Nevertheless, after weighing all the factors in their particular situation, some caregivers may well conclude that “nursing-home placement is . . . in the best interest of the patient.”—Coping With Alzheimer’s: A Caregiver’s Emotional Survival Guide.

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Help the patient keep oriented and in touch