It was
Boxing Day six years ago, and I was sitting by my mother’s hospital bed once
again. Over the preceding few years we’d had been here several times. Mum would
seem to be fine for a little while, although less mobile or active than a woman
in her late sixties should be, and then suddenly she’d take a downward turn,
become violently ill, be unable to move, feel dizzy, nauseous and terrified.
And perhaps most frightening of all for those around her, begin to forget
things. Important things, things like the time of day, or that her friend’s
husband had recently died. I remember in the early hours of one night trying to
persuade her not to call the friend, who was still grieving for her husband.
Mum was furious for me for saying that her friend’s husband had died, she
called me a wicked liar. She said I was evil and manipulative. That I was
trying to keep her from her friends. During these episodes she became angry,
frightened, and refuse to go to hospital. On the last time, the time after
Boxing Day she’d screamed in terror as they put her in the ambulance. She tried
to tell me that the whole world was tumbling around her. She told the paramedic
she just wanted to live long enough to see her grandchildren grow up.
It was
terribly frightening, and traumatic for all of us.
A few
days later a young doctor told me that Mum could come home, that they thought
she’d had bad gastroenteritis. I refused to believe that, I pointed out her
history or high blood pressure and suspected strokes, that her personality was
changing, that she was becoming forgetful. The doctor relented, and thank
goodness she did, because the CT scan of Mum’s brain that she ordered revealed at
large Arachnoid Cyst that had probably been growing steadily larger for several
years. And the depression, mobility, forgetfulness, dizziness, nausea and a
whole host of other symptoms were probably related to it. They arranged for Mum
to be transferred to the Royal Free Hospital at once, and very soon the Neurosurgeon
explained they wanted to operate, to put in a shunt that would drain the cyst,
and take the pressure off the brain. Mum was very scared, but she was told if
the operation didn’t go ahead the cyst may prove fatal sooner rather than
later. In the last night before the operation she told me she could see black
beetles crawling up the walls of the ward, and that there had been a orgy going
on in the cubicle next door!
The
woman I saw sitting up in bed after the operation couldn’t have been more
different from the person. She could move, smile, talk. And I could see just by
looking into her eyes that I had my mum back. It was such a relief that I
cried. We were incredibly lucky, we pushed for a diagnosis that could have been
easily overlooked and it turned out that the problems that mum was having were
caused by something that could be treated, and it gave her back a quality of
life we had feared was gone for good.
It's both
frightening and fascinating how illness and diseases of the brain can impact so
heavily of what we think of as almost separate from our bodies, our
personalities, our memories, the people that we are. I saw a woman I knew
better than anyone, and you knew me better than anyone, change completely and I
feared that she was gradually slipping into a darkness that I couldn’t retrieve
her from, but worse than that, was facing the possibility that we might never
see the woman we loved so much again, before she left us.
It was
that experience, and the awful emotional upheaval and turmoil that affected all
of us at that time, that I was thinking about when I became to research The
Memory Book. What if someone you loved was disintegrating in front of your very
eyes, if you didn’t know them, and they didn’t know you anymore? If that
happens, then what becomes of everything important that you shared together,
love, memories, the moments that define a person, and experience of life? What
would it be like, not just for those who were being left behind, but for the
afflicted person themselves, what would they feel like? How would they cope
with something they couldn’t control. And that was where the character of
Claire came from.
I went
on to do a great deal of research on Alzheimer’s, but crucially it was the
first person accounts of Alzheimer’s sufferers that really brought out Claire’s
voice. I think from one side of the veil of the disease it is easy to assume
that all that is left behind the AD sufferers eyes is fog, that there is very little
going on. In reality the disease often takes a long time to develop, with peaks
and troughs and stops and starts, and for a very long time the sufferer knows
exactly what they are losing, and they have to deal with the grief and
acceptance of that realisation, even as the awareness slips thought their
fingers.
I wanted
to make The Memory Book about the most important moments in a person’s life,
about the memories that define their lives, and the lives of those around them. I wanted it to be a book about love, not only romantic
love, but maternal love, about caring for someone no matter what obstacles
stand in the way. And also it’s a book about legacy, about being the best
mother, wife, daughter that you can be, and knowing that if you do that, what will
remain of you is love.
The Memory Book by Rowan Coleman is out now on hardcover and Kindle.
Here's a special video from Rowan, to me and you!
Here's a special video from Rowan, to me and you!
My grandad had Alzheimer’s and passed away last summer. The Memory Book sounds like it will hit close to home and I'm looking forward to this beautiful read. Thanks for sharing!
ReplyDeleteWow what a post! It is a beautiful book and I wondered what the inspiration behind it was. xXx
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