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Caring for grandmother brought guilt, betrayal

Grandma Nora was the best friend I had when I was growing up. I spent Friday nights with her in her little house across town. We cooked dinner together and ate ice cream. I gave her manicures and did her hair, piling her long, thick tresses into a silver cloud on top of her head while she watched Lawrence Welk on TV.

She shared with me her love of reading and fascination with happenings in the world around her. (She was the only person in her 80s I knew who rearranged her life so she wouldn't miss a minute of the Watergate hearings on television.)

I shared with her all the painful secrets of my youth, and she never once betrayed my confidence. But there came a time when I felt I had betrayed her.

I was home from college for the weekend when Grandma had her stroke. For 24 hours she refused to go to the hospital. My mother and I tried to take care of her, but Grandma always was a big woman and she was paralyzed on one side. She finally gave in and allowed herself to be hospitalized. Later, on her doctor's recommendation, she went to a nursing home. But she acted humiliated by it all. Grandma was a quiet, genteel Southern lady, almost regal in bearing, but also fiercely independent. She resisted admitting that she faced a life of dependency.

It was in the nursing home that Grandma began to change. My mother reported to me at school that she cried, she babbled seemingly nonsensical stories, she begged to be taken home. She said the staff at the nursing home hurt her, tied her in her chair and threatened her with hideous things. The staff, on the other hand, complained that she hit them and used filthy language.

We thought it might help if I visited her. But I went only once. When I walked in her room her beautiful hair was hanging in her face, stringy and unwashed. Her formerly peaches-and-cream complexion was sallow. Her eyes were tormented. As soon as she saw me she began screaming to my mother to take me away and not bring me back. People there would hurt me like they had hurt her, she said in a voice I didn't even recognize.

I left burdened with guilt. My grandmother always had been there for me, and now I was away at school, going on with my life, while she was suffering in a place or a state of mind that apparently terrified her.

The day she told my mother a story about graves being dug in the courtyard outside her window at night, we knew we had to take her back home or she would die.

Her old bedroom was converted into a sick room with hospital equipment. A physical therapist taught us how to move her and exercise her muscles. My mother and I, the two people closest to her, agreed between us to accept the responsibility for stopping, at least for a trial period, all of her medications except one to reduce risk of another stroke. Grandma had enough money in the bank for a part-time nurse for a short while; family members split up the remaining hours.

She came back home. And every day thereafter we got back a little more of the Grandma Nora we had known.

She lived another decade, eventually able to stay at home alone during the day as long as lunch was left for her. She seemed as happy as one could be with legs that would not work and a body that grew more fragile with each passing year. The last year of her life was spent in a nursing home _ a different one _ that she selected.

We never found out whether the horrors she described at the previous nursing home were real or prompted by the stroke or by too much medication. But I understood after that why so many of the elderly people I knew spoke of "going to a home" with such dread. And I was glad that for her, there had been the option of care in her own home when she needed it.

There are good nursing homes and bad ones, but few people would choose, given other alternatives, to end their lives in even a good one. Yet estimates show that by the year 2020, almost half of people over age 65 will spend time in a nursing home before they die. Their life savings likely will be depleted if their stay lasts long.

Home care can be better for many elderly people, but unfortunately it often is an option only when a family has the resources to pay for special equipment, nursing care, physical therapy and/or a visiting homemaker, or the knowledge to obtain the low-cost services available in some communities.

I am encouraged that Florida Insurance Commissioner Tom Gallagher has just appointed a Long-Term Care Advisory Panel that will, among other things, study ways to make home care a more viable option.

If Grandma Nora were still here, she would applaud.

Diane Steinle is editor of editorials for the North Pinellas editions of the St. Petersburg Times.