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Assisted Living...What's in a Name?
by Robert L. Kane and Joan C. West

Our mother took great pride in her independence. Her greatest fear was becoming  disabled. Unfortunately, this fear was realized when she had a stroke in May 1999 at the age of 84. She had shown some signs of memory loss and confusion prior to the stroke, but these problems became central thereafter. She recovered an amazing amount of function after rehabilitation and was able to walk and perform most activities of daily living on her own. Given her level of functioning and our aversion to nursing homes we decided that she was well-suited to assisted living.

People assume assisted living can replace nursing home care, but that is not usually the case. The range of services available (at what we will refer to as ALFI) was more suited to frail older persons who had decided that the effort required to maintain their homes was too much, but who were still quite capable of looking after themselves. A substantial proportion of the residents used canes or even walkers, but with these devices could function independently. Although assisted living implies the merger of care with a comfortable living environment, we discovered that this was not the model we had bought into. The facility’s expectation was that despite our paying for a basic set of services we would hire outside help to look after our mother as it became necessary. This pattern of having aides in ALFI was very prevalent. Several residents had 24-hour companions who were a common sight in the lobby or at the various activities. There was always tension between many of the regular staff and the hired aides as to where the responsibility of one started and the other ended. 

Our use of outside aides began as a part-time supplement to give Mother more one-on-one attention. These aides were not really certified aides, but were just a couple of women who could devote a few hours a day for three days a week to keep Mother company. Then we moved to weekend aides, because it was helpful for Joan to have someone who could stop by for a few hours on the weekend so she would not have to keep running back from the her weekend home. Next it seemed a good idea to have someone to get Mother dressed just before lunch and oversee the lunch hour. Mother's appetite was very poor when she was depressed and we thought that she would do better with a little one-on-one encouragement.

About six months after entering ALFI, Mother experienced the first of a series of hospitalizations for congestive heart failure. The ALFI nursing staff (who were not registered nurses) became very nervous if she said she could not breathe. Most of the time she was exhibiting anxiety symptoms, but one day she did have congestive heart failure. Joan and her husband took her to the hospital. This became a pattern. The use of aides came on gradually. After each hospitalization her return to ALFI was not easy for her. At one of these transitions hiring aides seemed a viable solution. Early in her course we had hired aides for only a day or two to facilitate the transition back to ALFI. After about a year we hired an aide to work as her aide/companion and to assume much of the day-to-day responsibility for her. Taking this step undoubtedly made our mother more dependent. More than needing the help, she loved the attention. Joan still continued to visit her almost every day.

Even when she had an aide during the days the problems continued. Mother would experience panic attacks when the aide left. Mother called Joan almost daily after 7:00 each night. Sometimes telephone reassurance sufficed, but on numerous occasions Joan had to return to ALFI to calm her down. As Mother’s condition deteriorated we were buying the services of both daytime and nighttime aides. However, the night aide was not doing anything to affect her wandering or controlling her disruptive behaviors and we decided to cut back to one 12-hour daytime aide. As her condition deteriorated, the facility put pressure on to have an aide during the nighttime. This meant we were paying for care which was more expensive than a nursing home.

We were paying the aides at a rate of $12 an hour. We pointed out that we were already paying for a set of assisted living services that now included extra payments for incontinence care. They said that this was the only condition under which they could allow her to stay. We reluctantly acquiesced for the short-term, but finally realized that we had to make a move. As things turned out, Joan and her husband were moving farther out on Long Island. We decided to transfer Mother to another assisted living facility known for its special dementia care. Indeed, Robert and his wife knew the owners and alerted them to Mother’s case. Despite these efforts to establish a strong working relationship with the new facility, Mother’s condition declined with time. She spent nine months there hating being among “crazy people.” Ultimately she became more than they could manage and she entered a nursing home, where she died after three months. 

Each step was harder for all of us. Despite our best efforts, nothing about this experience reflected the way she wanted to end her life. All the way through this depressing experience we kept asking ourselves, “If this is happening to us, who know how the system works, what must it be like for those who enter it uninformed and ill prepared?” Looking back over this experience it was not the way any of us would have wished it. Mother lived the life she dreaded. Joan found herself never able to do enough and miserable watching her mother decline in front of her. Robert was frustrated with his inability to make the situation work. All of the theories about how different types of care were supposed to respond to changes in an older person’s life simply fell apart, despite his best efforts to find the best providers of care and to help them develop effective approaches. 

Despite advocating empowering older persons, we wound up making all the decisions, even when they clearly violated our mother’s wishes. She wanted to live on her own (or really with 24-hour supervision) in an apartment. We felt that such an arrangement was too tenuous given her inability to sustain relationships with people who worked closely with her. Creating a new living situation from scratch would have been very difficult and costly, but we never tried to make it work. In the end, we are left feeling that the end of life should not have to be this way.

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