Diagnosed with dementia (probable
Alzheimer’s) in her early 80s, I first met Ana when she was 84 years of age.
Unique in her way of life, Ana had lived on the same section of land nearly all
her life. What is more, she had lived alone for over 35 years in the house she
had built for herself and her mother over 40 years previously. She had no
immediate family, but friends who knew her well and supported her, were of the
opinion that, despite her age and failing memory, it would be best if she could
stay in her own home. I used to call on Ana, to make sure she was safe and well
and to help her shop for groceries. In those days, a meal was delivered Monday
to Friday by ‘Meals on Wheels’ and Ana would stretch that one meal over lunch
and dinner. She also had a caregiver who came in two mornings a week to help
her shower. On other days she would get up and dress by herself before
preparing her breakfast which consisted of cornflakes, a banana, and a pot of
tea. Another caregiver came in on Saturdays to check on her, otherwise she
fended for herself.
Image of Portrait of Una Platts used with permission from Auckland Gallery |
In trying to work out her likes
and dislikes, I asked Ana one day if she had previously done her own cooking
and housework. She replied “certainly not
if I could help it.” When asked what she used to eat she said with a smile,
“An egg thing.” “What’s an egg thing?”
“An egg and anything in the cupboard.” With her declining capacity to care
for herself, these skills, or lack of them, took on a new significance which is
why her friends sought help from a community support service. However, all too
often other people (caregivers) assigned to help Ana wanted to clean the house,
but that was not at all what she wanted. Ana’s home reflected her passion for
painting, portraits and reading. She liked it as it was and she would not
tolerate anyone trying to change her way of life.
Instead, Ana wanted to engage in conversation,
she derived great pleasure from talking to people and was always interested in
hearing about other people’s life. She was an articulate and accomplished
raconteur who could talk to anyone. In particular, she liked to reminisce and, given
the opportunity, to talk about art. Her knowledge and skill were obvious and
she could usually remember significant detail when it came to art. Alas, the
fact that she often told the same story over and over again, or asked the same
questions repeatedly, was a trial to many caregivers and they would leave
because they lost patience with her ‘confusion’. Consequently, Ana’s support
system was unreliable, and what was worse, often those who came upset her
because they wanted to enforce their values in her home. They didn’t understand
Ana’s needs and underestimated her capacity to make decisions. Insights such as these made me realize how wrong
it is to judge people with dementia and more, how social perceptions of dementia
impact on people’s ability to live well with dementia. Ultimately, my
experiences with Ana took me on a journey that I would never have anticipated.
I look forward to continuing this discussion with you!
Please feel free to offer comment or question.
Grace O’Sullivan
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