Handled with care

Quietly, I take one more look at her cute, innocent looking face and turn out the light. I shut the bedroom door a little, just the way she likes. She gets afraid of the dark. Tonight looks like we may get to sleep early. Thank God, because you never know when she is going to wake up crying again.

Many nights her sleep (and ours) is violently interrupted by her screams of terror. We gently hold her and speak softly to her telling her it's going to be all right. Dazed and confused, she finally awakes and more often then not, she can't remember what scared her.

This evening, after putting Frances to bed, my husband and I tuck in our 11-year-old son. We collapse on the couch, breathe a collective sigh and stare at the TV. But within minutes we are planning for tomorrow. Who needs to be at work the earliest? Who is coming home first? Is care for Frances set up? Do we need to call anyone else to cover for us? No, tomorrow is a "normal day." My husband Joe will leave at 5:30 a.m. I plan to leave between 7 and 7:30. Neither of us has a late meeting so one of us should be home by 5:30.

Both of us work in the schools, and we have two boys -- ages 11 and 20. We are older baby boomers, and years ago, we had both heard of the sandwich generation and knew that people were living longer than ever before. We thought that after our children were grown, we would actually have some time to give to ourselves, our careers and to each other. Instead, we take care of Frances, Joe's grandmother.

At 94, she doesn't really have Alzheimer's, just some intermittent dementia. She can't walk, and she uses plastic briefs. She has a great sense of humor, adores animals, especially her cat, and loves to sleep. She has been with us now for almost two years.

Believing that people are not disposable, and fully understanding that Joe's mother -- Frances' only daughter -- could no longer care for her by herself, we brought grandma home with us. To do this, we have had to hire caregivers. We have tried home health care agencies, private providers, family and friends. At one point, we had nine people coming into our house in any given week. Joe lovingly referred to them as his "wives." We had no idea who, if anyone, would be there when we needed to leave for work, or when we got home.

Frustrated with the situation, I took two days a week off from work under the Family Leave Act. My quitting work entirely and taking care of grandma was considered, but quickly dismissed. I have never been domestic. I didn't even stay home fulltime with my children -- not because I had to work, but because I wanted them to at least live long enough to see adulthood.

Other domestic tasks are foreign to me as well. If the food isn't available at Costco, I don't know what it is or how to cook it. One of my biggest dreams has been to be able to work enough that I would be able to hire someone to clean my toilets. No, my staying home full- time was certainly not an option.

We decide that I need to go back to work and we put an ad in the paper, hire a caregiver who lasts less than a month. So it's hiring time again. Or is it? Is this the time to pursue alternative placements? Adult family homes? A nursing home? Or even full-time live-in help?

We assessed the situation: two jobs, two children, one grandma and lots of caregivers. All of us are having a hard time with the strain this puts on the family. Joe and I struggle, our youngest son struggles, and every time things get hard we ask ourselves, "How long can we keep doing this?" For the last 20 months the answer has always been "We're not sure. But it's not time to quit. We haven't quite hit that wall."

This week, I think I hit the wall. I really don't know how much longer I can keep doing this. I alternate between thinking that this is way too much for us -- we can't even live our own life -- and then thinking, "This is life!"

Sometimes I resent having grandma here. I resent the loss of freedom, spontaneity and privacy. At the same time, I am grateful to be able to have her with us to complete the circle of life. I realize that few people have the opportunity to observe and experience the beauty of life's sunset. I watch with awe as grandma tries to make sense of life -- hers and ours.

Frances is the gentlest woman I have ever known. Everyone calls her Frances. Her real name is Gladys, but she hated it so she changed her name to her middle name when she was about 90.

Our days begin with Frances calling out "You-hoo, you-hoo -- where's my cat?" She thanks us daily for taking care of her. On the days when she doesn't know where she is or who we are, we repeat everything at least 100 times. On the days when she is aware of everything, she talks up a storm, recites nursery rhymes, tells slightly off color jokes and plays with her cat.

When we brush her hair or rub her back, she jokes, "Stop it, I like it. That's what the girl told her boyfriend you know." When we offer her dinner, she always says, "I'm not hungry -- just give me darn little!" Then she eats dinner, 12 cookies and two bowls of ice cream.

The impact grandma has had on our lives has been nothing short of amazing. The family values that have bubbled to the surface and the conflicts they bring with them have been surprising and sometimes troublesome. As a family we have started to think about the ability to dispose of human life. We ask ourselves a difficult question: "Would we be thinking about another place for any other (read younger) family member to live so that our lives weren't so inconvenienced?"

The answer is usually silence, awkward silence. Another question my husband and I ask: "Are we totally out of whatever it will take to keep grandma here -- especially love and determination? Or are we just being inconvenienced by having to run yet one more ad for a caregiver, take yet one more day off work, or sleep on the floor one more night?"

We realize that many times people can't care for their family members. Does this, however, mean that those of us who can don't have to? Shouldn't want to? Couldn't be expected to? We struggled with these questions: What does being able to care for really mean? Does it mean that we can care for her if it doesn't interrupt my life, work, sleep, or time spent doing things I enjoy? Where is the line between being able to care for someone and not being able to care for them?

Do we have the answers? No. We know only one thing for certain: Grandma is part of our family. How much longer can we keep taking care of her? I have no idea. Will there ever be a time when we can't care for her? Maybe. Are we there yet? I'm not sure -- but I don't think so. We haven't quite hit that wall.

Not yet, anyway.

Copyright 2000 Cowles Publishing Company
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