March/April 2009

A Lesson in Determination
By Carol S. Heape, MSW, CMC
Aging Well
Vol. 2 No. 2

As a social worker launching a new business as a professional geriatric care manger, I met Margaret during the early years of my practice. “You have a prospective new client,” my part-time assistant told me, delivering the message she took during my absence from the office. She also added the assessment of the woman’s personality she derived from their brief telephone conversation. “She’s direct, kind of grouchy, very concerned about cost, and will only talk to you. You need to call her.” The description served as forewarning—this client, should we agree to work together, was not going to be easy. That was certainly the case.

Several days later, I arrived for the initial home visit. Margaret had told me she would be alone and asked that I knock loudly at the front door. I did as she suggested, and she responded, “Come in.” The door was unlocked. I entered the small, tidy house to find Margaret in bed, a detail she had neglected to mention. There was a Hoyer lift next to the hospital bed and a wheelchair beside it. I didn’t see anyone else in the house. Without a word, I realized this woman was bed bound and living alone. We introduced ourselves, and as I sat in her wheelchair next to her bed, she told me her story.

Five years earlier, Margaret had retired from teaching and suffered a massive stroke shortly thereafter. Then in her early 70s, after surviving the stroke, she became severely disabled as a result. When she had previously been moved into a skilled nursing facility, her adult children sold her home and all her belongings. Although she was told she would spend the rest of her life in the nursing home, she had different ideas. She disagreed with the decisions being made for her and talked of leaving the nursing home and having her own home again. Her doctors, her children, and the nursing home staff told her it couldn’t be done. When one of her children took her to court to declare her incompetent, she hired an attorney to prove otherwise—and won. She was more determined than ever to be independent, even with her continuing disabilities. Her adult children were angry about her decision, refused to help, and cut off all contact with her.

Margaret’s sister, who lived in another part of the state, agreed to help locate a house nearby that her sister could afford. She was able to move into a small home, and with the balance of her money, she remodeled it to accommodate her special needs. However, the residual effects of the stroke included an inability to walk, paralysis of her arms and hands, and a noticeable speech defect.

I looked around in amazement at the planning Margaret had accomplished from her bed in a nursing home hundreds of miles away. She had determined what the house needed to be functional for her. The remodeling included wood floors to accommodate the wheelchair. The hospital bed and Hoyer lift occupied the living room, full of natural light streaming through abundant windows. The lowered kitchen counters, sink, and stove provided her wheelchair access. Easy-to-open containers located well within her reach allowed her to function in the kitchen, despite her crippled hands and arms. With no money or room for frivolous items without a purpose, the belongings and furnishings in the house were sparse. Outfitted with a lowered sink and mirror, the bathroom was constructed with a tile floor with a center drain. “I designed this,” Margaret told me once again. “When I was in that nursing home, I knew I had to get out. I had lots of time to think of what I needed.” Her house was made to order.

Margaret had called our agency because she needed help finding someone to assist her a few hours during the day. While we agreed to work together, she was explicit that she had limited funds and needed only a little help. She was confident she could manage on her own. Although she needed 24-hour care, she couldn’t afford it and didn’t have the resources for more. There was little money for care management and what there was had to be carefully budgeted. So our association began—it would have to work.

As clients go, Margaret wasn’t easy. We’d put in place the resources she had requested and then not hear a word from her for weeks at a time. She had a special phone set up. Although it was voice activated, she was out of bed and in her wheelchair only a few hours each day—and otherwise wasn’t close enough to use it. She refused to authorize regular monitoring visits and didn’t qualify for public services. But we knew that if she needed something, she’d call. Sometimes the call was a panicked one requiring an immediate response, such as times her regular care provider failed to show up and she was alone.

This tenuous client/care manager relationship went on for some time. During the cold, rainy winters, I’d get calls from the hospital telling me Margaret had pneumonia, was recovering, and would need help once she returned home. I’d visit her only to be told that she needed only one or two hours more per day and she’d be fine. We’d argue about what was safe and what wasn’t. Eventually, we’d come to a compromise that we both could live with. Although she never admitted it, I knew from our conversations that she was determined to stay out of the nursing home—a place she told me was “just awful.” I had to admit my respect for Margaret continued to grow.

From time to time, out of the blue, we’d get a call. Someone had failed to show up, or she’d fired another provider. She had a habit of firing people if they didn’t toe the line. As a retired teacher, she could be a hard taskmistress but then would turn around and compliment the provider about the cleanliness of the kitchen floor. Not everyone wanted to work for her, particularly when she was known for sending people home early without the hours they were counting on. She had a sharp tongue and would give a piece of her mind to anyone—from the doctor, home care nurse, or provider to the care manager. Our agency became the fallback position, but Margaret’s determination and will had impressed everyone. Her pure stubbornness was likely one of the reasons she did as well as she did for as long as she did—and we all admired her for it.

She was on the list for a Christmas food basket, which she gratefully accepted. She sent a handwritten thank you note that we all knew had taken her an hour to write with her crippled hands. The hospital installed a Vital-Link system to call in case of emergency and wrote off the costs. When new program money came in, we worked with the county to help her receive a little more help. Community agencies got together and bought her a new TV when her old one couldn’t be repaired. Her neighbors checked in on her when they got home from work, put her trash can out for pickup, and decorated her house with Christmas lights that she could see from her hospital bed.

For nearly eight years, Margaret lived independently in her little house with minimal help (considering her disabilities) before her health declined to such a degree that she had to return to a skilled nursing facility. With great reluctance, Margaret moved into a nearby facility with help from one of her daughters with whom she had reconciled.

Whenever I have a client who’s determined to stay at home and remain independent despite significant struggles, I remember Margaret who could not walk, could not dial the phone, and needed someone to transfer her in and out of bed. She was absolutely determined to have a life of her own. In that regard, she was successful for much longer than anyone thought possible. To me, she continues to be a great example of determination, stubbornness, and the ability to be in charge of one’s own life.