Survival is possible by understanding
the disease and its victim.
by LeAnn Campbell
According to the National Alzheimer’s Association, approximately four million Americans have Alzheimer’s disease, and that number will increase to 14 million by the middle of the century unless researchers find a cure or prevention. The disease affects one in ten people over age 65 and nearly half of those over age 85, as well as a small percentage of people still in their thirties and forties. These victims may live an average of eight to 20 years after the onset of symptoms, and almost 75 percent are cared for at home by family and friends.
It is frightening to see the first signs of dementia, such as confusion and memory lapses, in a loved one. You may deny it or think it is absentmindedness at first; but when the confusion increases, it becomes apparent that something is wrong. If you are one of the 19 million Americans who have a family member with the disease, here are some suggestions for what to do and how to cope.
Ten warning signs
The National Alzheimer’s Association has a list of ten warning signs. Does someone in your family fit several or all of these?
- Recent memory loss that affects job performance
- Difficulty performing familiar tasks
- Problems with language (forgetting simple words or using inappropriate ones)
- Disorientation of time and place
- Poor or weaker judgment
- Problems with abstract thinking (forgetting what numbers in a checkbook are for)
- Misplacing things (putting things in inappropriate places)
- Changes in mood or behavior (rapidly moving from calm to anger)
- Personality changes
- Loss of initiative
If the diagnosis is Alzheimer’s, a key factor in coping is to understand as much as possible. Explain to others that your loved one has a disease. Help them understand that it isn’t insanity or stubbornness and is not a normal part of aging. Encourage family members to study information about the disease so you can make decisions together.
Three stages
The Alzheimer’s Association recognizes three stages of the disease. Be aware that individuals may vary and that the stages may not apply to all victims.
- Confusion and difficulty making decisions (two to four years)
- Moderate memory loss and confusion, problems with understanding, walking, speaking, and social skills (two to ten years)
- Inability to recognize family, weight loss, incontinence, loss of words, delusional behavior, seizures, and mood changes (one to three years)
How to help
Reduce his stress. Your own coping will be easier as you find ways to reduce stress for your loved one. Try to maintain a regular routine, along with appropriate exercise and a nutritious diet. This will help eliminate confusion.
Adapt the environment. In the early stages, the person may benefit from memory aids, such as a daily schedule posted on the wall or in his pocket. Written reminders for tasks he might forget, large labels on frequently used things, and written directions to help find necessary items may aid his memory and cut down on your stress.
In later stages, take precautions for his safety and your peace of mind. Store potential hazards: knives, scissors, cleaning supplies, irons, hairdryers, and knobs from the stove. Reduce risk of scalding by lowering water heater temperature.
You will cope better, too, if you decrease the victim’s chances of wandering. If you take daily walks together, you may ward off his restlessness and agitation. Other ways to reduce wandering are to change locks on the house and use child-safe doorknob covers, new door latches he may not understand how to work, a bell on the door, or exit doors camouflaged with a curtain or screen.
In case he does wander, be prepared. Have him wear identification, a piece of bright-colored clothing, and bicycle reflectors sewn onto jackets. Keep a good photo and an article of unwashed, worn clothing in case dogs are needed to search for him.
Adapt activities. Your loved one may stay more involved with the family for a longer time with activities he can participate in. Find things to do together, but give yourself a break, too. Seek opportunities for him to socialize in senior centers, churches, or adult day care centers. These activities may be easier for him to adapt to if they are familiar to him before the disease advances. Take advantage of the hours he is away from home to do things that benefit you.
Finding activities that you and your loved one can do together helps both of you cope. The complexity of activities will depend on the severity of dementia. He may still be able to play some board or card games, color or paint pictures (some can do paint-by-number pictures), or recall events from the past. If he can still talk about the past, turn on a tape recorder and preserve memories for your family. (We talked to my mother-in-law’s brother after a tape-recorded session and found that her childhood memories were more accurate than we’d thought).
If the person can no longer do these things, he may be able to help wipe the table, fold clothes, or stir ingredients for a recipe. Share a companionable half hour drinking tea or coffee.
Recognize your need for help
If your loved one’s condition worsens or interferes with your life too much, it is time to get help. You’ll know it’s time when you feel exhausted most of the time or when you start abusing your own health by overeating or using alcohol or drugs.
The National Alzheimer’s Disease and Related Disorders Association has more than 200 local chapters nationwide, offering support services and educational programs They live up to their slogan: “Somebody to stand by you.” See the partial list of the association’s resources.
Community help
The Alzheimer’s Association can direct you to several avenues of help, including Alzheimer’s support groups. If you do not know where to find one in your town, contact the Area Agency on Aging (look in the Yellow Pages under Senior Citizens Service Organizations). Support groups give you an opportunity to meet with other families who face problems similar to yours.
Turn to the Area Agency on Aging for help in finding other means of help, including home health services, home-delivered meals, respite care, adult day care, legal or transportation services, and services in residential or skilled-care facilities.
Family and friends
When a parent or other relative is diagnosed with Alzheimer’s, families that regularly get together find their closeness a blessing. They can lean on each other for support.
Christian friends can be a valuable source of support, too. The church can also help people outside the congregation by sponsoring an Alzheimer’s Awareness Night. If it is offered to the public, many hurting families may attend. Contact the Area Agency on Aging and ask if they will provide an informational program.
Take care of yourself
You need time to spend with others and to enjoy your own interests. Watch for signs of stress in yourself (upset stomach, headaches, anxiety).
Take care of your physical health with rest, exercise, and a healthy diet. If your loved one is restless and you don’t get a good night’s sleep, talk to your health care provider about ways to cope.
If traveling, take someone who can share the responsibility. This will relieve you of the burden and give you someone to socialize with.
Keep a good sense of humor. Laughter is a great stress-reliever.
Give yourself time away from your situation to help someone else. Take part in the Alzheimer’s Memory Walk to raise awareness, attend your grandchildren’s school events, or take an hour and deliver meals to shut-ins.
Remember that you are human. Don’t torture yourself with guilt feelings. If you make a mistake or have an impatient or angry outburst, forgive yourself and forget about it. Your loved one won’t remember, and dwelling on the incident will not help either of you.
Have realistic expectations, accept what you and your loved one can and cannot do, and enjoy the successes.
Alzheimer’s resources
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