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
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
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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