Caring for an Aging Parent Can Bring Crushing Responsibility

Joan was “almost out of the woods,” as she puts it. Her two children were teen-agers, old enough that she and her husband could leave the house for a trip to the store--or even a weekend away--without hiring a baby sitter or bringing the family along.

Then she went back East for Christmas, saw the condition her mother was in and suddenly realized that she was facing a whole new set of parenting responsibilities.

“I had just seen her the year before,” Joan said. “But this time she was totally incontinent. She had to be bathed, dressed, diapered; she was a baby, an adult baby. She had a paid companion who was supposed to be taking care of her, but the companion was, quite frankly, useless.

“My brother lived nearby, but he didn’t know how to deal with it. So on the spur of the moment, my husband and I decided to fly her back to California to live with us.

That was 1980. “We were so naive,” Joan said, looking back. “We had no idea what we were getting into.”

Joan is a member of what sociologists call “the sandwich generation,” caught between the needs of growing children and aging parents. The struggle to meet those two sets of demands is only part of the problem: Somehow, people such as Joan have to find some time and energy for themselves.

The current sandwich generation may have its own label, but it is hardly the first. In previous generations, however, extended families were more common, and there were more people to call on for help. But now, as families fragment and the average life span stretches, more dual care givers are finding themselves caught in the middle.

For Joan, the problem of dealing with an aging parent was compounded by Alzheimer’s disease, a degenerative brain disorder that attacks victims from midlife to old age, progressively short-circuiting the brain until it causes death. So far, there is no cure.

When Joan moved her mother, Anna, into her family’s Newport Beach home, Anna no longer recognized her own daughter or other family members. “She’d call me George or Bill or she’d tell people, ‘This is my son,’ ” Joan said. “But she was so sweet; she had such a presence about her.”

Joan realizes she was lucky; some Alzheimer’s victims behave unpredictably, becoming violent and lashing out at those around them without realizing what they are doing.

Joan took care of Anna at home for 2 1/2 years. “I wouldn’t let the children help with her physical care,” she said. “It just didn’t seem right. But they had to help in some ways. There were times she’d walk into the living room naked, and they’d grab her and cover her with a towel and say, ‘Come on, Grandma, let’s go get some clothes on.’

“Emotionally and psychologically, the household revolved around Grandma,” Joan said. “My attention was fragmented, and I know I wasn’t always there on an emotional level when my children needed me. But it made the whole family closer. And they (the children) became much more responsible.

“There were times when I would fall apart. I would pray, ‘Please, God, I have to go to the store and I can’t take her. Please don’t let the house burn down while I’m gone.’

“I tried some creative things. I called a baby-sitting agency and asked if they’d consider an adult baby. Some of their sitters were willing to do it. It’s the same issue you went through when your children were babies, except here you can’t use the local teen-age sitter. It cost much more, a minimum of $6 an hour.”

Even when she did get a break, Joan still had responsibilities waiting when she returned home.

“I remember one night, I came home from a dinner party. I was tired; it was 1 in the morning, and she had had the worst diarrhea I’d ever seen. I literally went and just knocked my head against the wall. The kids came out and said, ‘Mom, get hold of yourself. Grandma needs you.’

“I was so tired of being the adult to everybody. I wanted to be the child, to have somebody take care of me.”

And almost every day, Joan admitted, “I wished she’d die. I’d say, oh, God, why is this continuing? I didn’t have an answer. But whatever the reason, there was a job that had to be done, so I did it.”

Joan had another choice, but to her it wasn’t an acceptable one. “I said I would never, ever, ever put Mom in a nursing home.”

Joan searched for community resources to help her deal with the burden, but she couldn’t find any. As a result, she helped start an adult day-care center and began taking Anna there.

“It was great, but I needed more,” Joan said. She then helped start an Orange County chapter of the Alzheimer’s Disease and Related Disorders Assn. and joined one of its first support groups.

Still, “I was running out of energy,” she said. Reluctantly, she placed her mother in a board-and-care home, an individual home with up to six patients, rather than a larger, more institutional nursing home.

Anna lived there for more than three years. When her condition worsened early last year, “We brought her home to die. My daughter and I nursed her for two months.”

In the spring of 1986, the family’s ordeal was over. Anna died. “I know what I did was right,” Joan said. “If I were to die tomorrow, I would feel as though I had accomplished something. And I expect my kids to take care of me if I ever need them.”

On the other hand, Linda’s mother-in-law is in good mental and physical health for 81. But she still needs help getting around--she doesn’t drive--and taking care of the house she shared with her husband of 55 years until his death two years ago.

At least once a week, Linda, her husband and their children, ages 15 and 17, make the 50-mile round trip from their Newport Beach home to Grandma’s to work around the house and help her with errands. “All of us do something to help out,” Linda said.

“It would be easier for us if she moved closer to us,” Linda said. “But she would like to remain independent and stay in her house, even though it’s a time-consuming, overwhelming job.

“You know, 50 or 100 years ago, Grandma or Grandpa or Aunt Helen would just move in with you. But it’s not that easy now. I know she wouldn’t want to do that. We’ve decided to let her enjoy her independence and freedom now, as long as she can.”

There are times, Linda said, when she feels “pulled in both directions. I try to stretch wherever I can stretch, but I can’t be everything to everyone.”

Rather than pitting the children against their grandmother in the battle for her attention, Linda said she tries to include the children in the time she spends with her mother-in-law.

“It helps for them to know this is just part of life,” she said. “And it’s a two-way street. Grandma’s a very supportive, loving woman. She’s always ready to bake cookies or do something for them.”

Sharon, who lives in Irvine, wishes she could help take care of her aging parents. But they live in Iowa, her father in a nursing home, her mother nearby in the family home. She feels guilty because her sister, who lives in the same Iowa town, bears the biggest part of the caretaker role.

Sharon’s 77-year-old mother is in relatively good health, but her 82-year-old father has had Alzheimer’s disease for 10 years.

“It’s so frustrating being so far away,” she said. “I’m just not able to help a lot. I had to realize it wouldn’t do me any good to go there and stay; my children needed me here. And my being there wasn’t going to help them, either. It would just complicate things.”

Now Sharon has found a way to alleviate some of her guilt and frustration. She volunteers with the local Alzheimer’s Disease and Related Disorders Assn. chapter.

“That has been a very big help to me. I can’t help my mother and my sister, yet I know there are a lot of other people I am helping. That makes me feel like I’m doing something for them, too.”

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