Wendy Mitchell's books
This is Wendy Mitchell’s first book. In this edition she tells the story of her diagnosis of early onset dementia at age fifty-eight and her decline from very efficient I.T. health manager to her forced resignation and move from the city to the country.
I read her second book “What I Wished People Knew about Dementia” before reading this one. I found “Somebody I Used to Know” not as well written, and therefore not as pleasant to read, compared to "What I Wished People Knew about Dementia.
However, both books contain good information - indeed one could claim “Somebody I Used to Know” contains the more useful information.
Differences
In "Somebody I Used to Know", Mitchell talks about how the dementia is “stripping away” her emotions, affecting her senses. She no longer gets angry - “just sad”. She talks about how the distress that noise caused her, the confusion of colors and sounds, led to her move to the country and how in her new home she could not remember what was in cupboards or behind doors.
She removed the doors and labelled the cupboards and drawers! Dementia has changed her gait, she walks differently and requires a stick. If she has not
performed a function or action for a short time she forgets how to do so. It takes her brain a long time to make a simple decision. She has increasing difficulty getting words out; fortunately her ability to type remains. She fights to stay one step ahead of the disease. But there are times when “ the difference between the old me and the new me hits me so hard it leaves me without breath.” Sometimes she feels, “There is little of me left.”
“Can I go on?”, she asks herself. She realizes she is changing every day, she is no longer the person she was a year ago, a week ago, yesterday. “I’m losing my sense ofself, and that is more frightening than anything, because that’s all I have. -that’s all any of us have”. Sometimes she feels she is just a “shell”.
Minor victories
Still, she has “minor victories every day”.
People constantly ask her how she does all the things she does on her own.“With difficulty”, she replies. “But nothing is impossible even for someone with brain disease”.
She tells us about the research and public relations work she has commenced post diagnosis.
This means a lot of work, time and angst as she types out her speeches, sets alarms so as to be on time and finds her way to the venue. She mentions how difficult it is for her to turn on the lights and showers in the hotels she stays in.
On one occasion she travelled some distance to give a speech to a medical conference; she was to speak at both the morning and afternoon sessions. Her morning speech went fine but when
the chair of the afternoon session forgot to call her name she was forgotten.
When she mentioned this to the organizer the woman said “Oh well never mind, you spoke this morning”. All her hours of preparation, hours of travel and hours of angst just cast aside.
They just don't get it!
Wendy felt “forgotten”, a feeling she frequently has as many friends do not visit, write or call. “They don’t know how to react to me”, she says.
“They just don’t get it! They just don’t get it!” This is Wendy’s reaction to a medical speaker saying dementia patients “are difficult” and “challenging”. She mentions elsewhere how so often dementia patients are chastised, indeed abused, for refusing to consume some foods or drinks; this happens particularly in care. Sometimes, Wendy says, “They simply do not like the
food. Perhaps they are tea drinkers and have never drunk coffee during their
lives”, she adds.
The digital age
Wendy is fortunate in that she was in IT before she got dementia. The years of IT work and knowledge enable her to utilize her internet, I-Pad and mobile telephone to find her way around not only locally but into London and further afield. Such applications would not be available to people, like myself, who are pre-digital (a digital dinosaur!). Although, I note, that often the app she is using on her phone tells her to turn the wrong way or she ends up in the
wrong place following the phone’s railway guide! Agh! The digital age!
Death and dying
She talks about death and dying. About how powerless she is . Powerless to live the way she wants but also powerless to die the way she wants. She would choose euthanasia but that is unlawful in England and would require a trip to Switzerland. This she would chose if “I didn’t have to die knowing that my daughters would have to make that return journey on their own.”
“If assisted suicide were legal in this country and I knew my girls would not be in trouble
afterwards if I needed their help, then I would be first in line. The only thing
that remains is the question of when, and that is the state of limbo I live in”.
Talking with her daughters about death she finds challenging.
Soldiering on ...
But Wendy soldiers on, fighting daily to cope, achieve and gain pleasure from life. The research, public speaking and other activities she does “both for myself and others”.
She still lives and copes alone. Photography and walking obviously give her great pleasure.
She has parachuted from an aeroplane. Recently she flew strapped to the wing of a Tiger Moth!
Wendy Mitchell is an example of what can be achieved with guts and determination. A role model for us all - apart, perhaps, from the parachuting and wing flying!