Thursday 22 January 2015

Remembering forgetting



As a keen reader I’ve started as I mean to go on and three weeks into the year I’ve nearly finished reading my third book.

This fictional piece is a dark tale about a female victim of a stalker, not the happiest of reads. It is similar to the likes of Gone Girl though and so I’m interested to see how it ends now.

However, my prior two books – fiction again – have been a bit more thought provoking. They again were hard to read – not because they are dark, but because both cover difficult topics.

One, The Last Days of Rabbit Hayes follows the journey of an middle aged woman who is dying from cancer and her last week with her family and friends, looking back on her life (not as morbid as it may sound!) The other Elizabeth Is Missing introduces the reader to Maud, an old lady who suffers from dementia.

Both have touched me, as you’d imagine the first really helps you put things in perspective and value life and how short it is, the second was at times painful as it brought back memories of one of my relatives.

One of my grandparents, my Mum’s mother, known to me as Nanny Rhoda, had Alzheimer’s Disease and the wonderful way Elizabeth is Missing is written it almost made me feel I could peek into how her mind must have been running.

I know of other different relatives who were struck with this cruel illness and also relatives of friends.

Of course no illness is nice to have and if someone is deteriorating or dying it’s horrendous for their loved ones, but there’s something about losing the person in front of you whilst they are still alive that hits so hard.

It’s interesting the different ways it impacts individuals too, some people forget their nearest and dearest, others turn violent, most people seem to revert back to their past.

And what is the right way to deal with it? Should you play along with the person who thinks they’re a little girl again or are living somewhere where they grew up? Or should you correct them and explain who everyone is and where they are now?

I often wonder if they will ever find a way to cure people with the illness or do we just have to accept that for some that traumatic and confusing journey is a fact of life that’s just going to happen?

Why is it some people get it and others don’t?

I guess I’ve also been thinking about it more of late since a relative sadly passed away at the start of this year. He was actually my grandmother’s brother and Alzheimer’s really hit him hard. It seems people get so bad you end up feeling that passing on is in actual fact a blessing as they’re not really themselves and don’t have a good life anymore. I know some have said they felt they said their goodbyes to the person way before they died as they weren’t themselves for so long.

It seems often in hindsight that people have displayed signs for quite some time – I can remember Nanny Rhoda forgetting people’s names and we in fact used to tease her, it would be a running joke. Now looking back you feel awful as that was probably in fact the warning signs it started.
In the book Maud has carers come to visit and she has a pile of notes to remind her to eat/not eat/not leave the house etc. It again reminded me of Nanny Rhoda, when she started to get bad and was still living at home along, miles from where the rest of us live. She’d forget to eat but tell the carers she had eaten, as she simply couldn’t remember.

Unfortunately she had to go into a care home, I can remember visiting her there and it was hard I won’t lie. Christmas mornings would be standing in the care home amongst other people, trying to be festive and cheerful. We tried having days where she’d come out for family gatherings, but again she would get so worked up (where she was used to the care home routine) it was kinder to stop.

I often remember – and still have – a photo album I made for her. A memory book of sorts which had labelled photos of who was who to help remind her and prompt her thinking. On the board by the dining room it would say what meals the residents had eaten and whenever you asked Nanny Rhoda what she’d have it’d be some made up meal and not really what she’d experienced. She just couldn’t remember.

Imagine, imagine every day waking up and within minutes forgetting what’s going on, where you are, why you are there? Thinking things that happened to you years back only just happened and having to relive certain traumatic times too I imagine.

I’m pretty forgetful now and I admit at times I do start to worry, maybe I will take the same path. It is such a painful illness to go through when it affects your loved one, but if you yourself have Alzheimer’s or a form of dementia how completely confusing or frightening must your life become?

What a cruel way to have to live.

I don’t have any grandparents left now, my first Granddad passed away when I was at secondary school, the second when I was still relatively young, my first Grandma when I was at University and Nanny Rhoda who I’ve referred to since I’ve been older.

So if you’ve still got your grandparents cherish them and make the most of them. I admit I get very envious of friends who talk about their grandparents, it feels I’ve not had any for so long now. You won’t believe how much you take them for granted until they’re no longer here, or if they are here but are not who they used to be. It’s not nice.

I apologise if this post is somewhat depressing and morbid to read. I guess reading these books and recent conversations has bought a lot to the surface and ironically made me remember things.

For now I guess it’s sad but true, we just have to accept this illness is here and pretty common, so in the meantime I’m going to try do something about it. I’ve already started researching, but I think this year I’m going to try take part in some sort of event – maybe the Alzheimer’s Society Memory Walk – watch this space.

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