- The Washington Times - Sunday, May 12, 2002

"At first, I said, 'Let's just survive day one,'" says Mrs. Harris, a 48-year-old preschool teacher who lives in Fairfax. "Then it was day two. After a while, I realized I was no longer counting. I was in charge. It is a balancing act to adequately care for everybody. You can make the choice to accept it or to run away. To me, there has never been an alternative."

More than 4 million Americans are living with Alzheimer's disease, a progressive, degenerative disease of the brain. Seven out of 10 afflicted with the disease live at home, according to the Alzheimer's Association. Medicare generally does not pay for long-term assisted-living care or skilled home health assistance for Alzheimer's patients, so it most often falls on family members to care for their loved ones.

That means there are millions of people like Mrs. Harris trying to keep their lives together while living with the emotional, physical and financial issues that come with the disease.

"I've lost my best friend," Mrs. Harris says of her husband. "He was somebody who was there for me every night, interested in my life."

Mrs. Harris has gone through a plethora of emotions over the past few years. There was denial as she thought her husband's increasing forgetfulness was caused by the stresses of the new marriage and his job as a database analyst. There was shock as Mr. Harris was diagnosed.

There has been sadness knowing the disease is getting worse, and anxiety when Mrs. Harris has wondered how the medical bills will get paid. There has been overwhelming fatigue, and finally, extreme guilt when Mrs. Harris knew the time had come for her husband to live in an assisted-living facility.

"It was horrible to leave him," she says of that day 18 months ago, "but I am still responsible for his medication, his hygiene, his well-being. He still responds to me better than anyone else."

The range of emotions and stresses Mrs. Harris feels are quite common in those caring for a loved one with Alzheimer's says Dr. Dolores Gallagher-Thompson, a professor of psychiatry and behavioral sciences at Stanford University and author of the book "There's Still a Person in There: The Complete Guide to Treating and Coping With Alzheimer's."

"Some people go through a denial stage," she says. "Then they may get depressed when they realize the illness is only going to get worse. In the final stages, there usually are feelings of grief and loss, although many people have been dealing with this all along."

What is particularly stressful for many families is the loss of control, says Dr. Gallagher-Thompson, who also has acted as a caregiver for her elderly mother.

"Some people compare caring for a loved one with Alzheimer's to caring for a child," she says. "However, caring for a child has its stresses, but also its rewards as a child grows and shows new skills.

"With the elderly, it is the opposite," Dr. Gallagher-Thompson says. "They become more dependent on their spouse or adult children, and that can be a difficult role reversal. It can be very awkward getting into someone's finances, physical care and personal care. It is hard to make that mind-set change that you are in charge."

Bill Kays' wife, Pearl, lost her 12-year battle with Alzheimer's three months ago. Mr. Kays, 70, of Vienna, says adjusting to being in charge was difficult after more than 30 years of marriage.

Equally hard was adjusting to the isolation, Mr. Kays says. As the disease progressed, the couple could not be in many social situations, as Mrs. Kays' communication skills were deteriorating.

Mrs. Harris says she felt lonely as well.

"Being in this situation is extremely isolating," she says. "You find out who your friends are."

The physical signs of stress

@$:There are definite signals of caregiver stress, says Dr. Peter V. Rabins, professor of psychiatry at Johns Hopkins University Medical Center and co-author of "The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer's Disease, Related Dementing Disease and Memory Loss in Later Life." The problem is, many caregivers are too busy worrying about their loved one to notice when their own health may be in trouble, he says.

Signs of depression such as sadness, crying, sleeplessness and feelings of hopelessness are common among caregivers, he says. Though all those feelings may be present while one is caring for a loved one, a caregiver should seek help if they worsen markedly.

"One warning signal I look for is has the person given up things they enjoy?" Dr. Rabins says. "Then I advise them to look for some form of respite care, even for a few hours."

Mrs. Harris says she has been sick more in the past 10 months than she was in the previous 25 years. She also recently had a frightening bout of vertigo.

"I couldn't do anything but stay in bed," she says. "It was really scary because it made me think about what would happen in my household if I couldn't take care of everyone?"

Mr. Kays says he thought he was coping adequately with the stress of his situation. Three months after his wife moved to a nursing home, however, he suffered a heart attack and underwent quintuple bypass surgery.

"I went back for a checkup, and my doctor says that caregiver stress caused my heart attack," says Mr. Kays, who has fully recovered. "You think you are doing fine, but I had no idea what the stress was doing to me. You have to take care of yourself, though. You either don't think of yourself at all, or you think or yourself last."

Another warning sign of extreme stress is an increase in the feelings of frustration, Dr. Gallagher-Thompson says.

"You can't help but be frustrated," she says, "but you need to learn to deal with it, rather than getting angry at the patient."

Mr. Kays found himself getting increasingly frustrated when his wife asked him the same question three times or argued over wanting to wear clothes that didn't match.

"It became a lot easier for me when I got the term 'so what' through my head," he says. "You've got to pick your battles. When I finally got it thorough my head that this was not the girl I married, that she can't help it, I looked at the situation differently with more love and sympathy. That made it easier for me and, I'm sure, for Pearl."

Dr. Gallagher-Thompson says flexibility and patience are keys to getting through each day.

"Some caregivers may be OK for a few years before their patience starts to wear thin," she says. "They may try to hurry the patient through things that are going to take time."

That is where flexibility comes in, she says.

"So many things are being demanded of you," Dr. Gallagher-Thompson says. "There is the financial, emotional, social and personal care. You have to be flexible, and you have to then have your own life."

'Your own life'?

Mr. Kays says he was "horribly depressed" by the time he called the local chapter of the Alzheimer's Association. That organization led him to a support group where others were going through the same thing, as well as an adult day care program to give him some relief.

"That gave me some respite," he says. "I could cut the grass without worrying about Pearl leaving the stove on."

Dr. Rabins says taking some time out is the single most important thing a person can do to ensure he or she is still able to care for a loved one.

"Even if their time away from home is as simple as going shopping," he says. "Even if it is half an hour or an hour, it will help."

The U.S. government recently recognized the need to support family caregivers. The Department of Health and Human Services gave $128 million to states for the National Family Caregiver Support Program. The money will go to run programs that provide respite care, transportation and support groups to ease the burden for family caregivers dealing with a variety of disabilities.

Mrs. Harris says she has gotten a lot out of support groups. She also calls the day care respite programs her husband attended her "salvation."

"I have been in three different support groups," she says. "I enjoyed talking and knowing that everyone is in the same situation and knowing it is OK to feel the way you do. It was helpful to hear about what might be coming next."


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