Alzheimers – What a bastard

There are lots of terrible illnesses, diseases and medical problems that can rob  you of a loved one.  Some happen really quickly and can strike without warning whilst others can slowly rob you of a loved one over a long period of time, but mostly whilst this is going on, the person who is affected will be aware of what is happening and able to communicate with those around them.  And then there this bastard of an illness called Alzheimers.  I am unfortunate enough to currently be experiencing the affect of this illness on a well loved person, my mum, and this is my story about how it has affected us both in different ways and how it has changed my relationship with her.

Lets start off by giving you a background of my mum. Born in 1952 to a family of 7 sisters, she spent some of her time on the mean streets of Hull docks.  Her family lead a kind of nomadic existence because of my grandads job in the Merchant Navy and him working the rest of his life as a farm hand.  Farm to farm, town to town, county to county.  My dad met my mum when she was 16 & him 18 in the seaside town of Mablethorpe where she was living at that time in the former station masters house.  The two fell in love and my mum & dad wanted to marry, my grandad wasn’t too keen on my old man as he was a bit of thug in his youth so he said no and this was still in the days when the brides father legally had to give permission. With that my mum & dad tried and successfully completed the conception of my oldest sister, my old grandad had no choice but to allow the marriage.  My mum went onto train as a nurse and ended her career through ill health in the late 90’s looking after disabled adults, a job that she loved.  She had 4 kids, 10 grandchildren & 1 great grandchild with myself being the youngest of 4 and the only boy.

About 10 years ago all of the family started noticing a difference in mum, I had moved about 350 miles away so was the last to notice but it was evident to see when I did go home that something wasn’t quite right.  It was the little things for example she used to forget my name or would ask 3-4 times if I wanted a drink.  She could still cook and function “normally” but began to forget things were cooking or would peel enough spuds for an army because she had forgotten she had already peeled some.  Now some of you are thinking “why didn’t you ship her off to the doctors asap” which is a valid question to ask.  My mum was very stubborn and whilst I suspect that she always knew that something was wrong, she never confronted it and my dad respected her wishes not to investigate it further.  It became the elephant in the room and as the years ticked by it became progressively worse.  Numerous arguments were had over it and me and my dad very nearly come to blows over my persistence to get her to the doctors.

Sometimes when I saw my mum she would just sit there and stare into space, she started to lose concept of time and also began to get more clumsy.  About 3-4 years ago my mum was on holiday with friends and my dad when she fell and broke her arm.  From this point on my mums condition seemed to deteriorate  quicker and my dad who was nearing retirement convinced her to go to the doctors.  Tests and scans followed and early one evening I received a call from my dad.  I tried to hold it together but when he told me that it was definitely the big A I broke down. It wasn’t so much the confirmation that my mum was effectively disappearing in front of me but more that I could sense the upset in my dad’s voice and that he was trying his hardest to keep a brave face on it, my mum in the background was saying “whats up with you, why are you upset. Whats happened?” my mum was unaware as to the situation facing her.

Over the course of the 6 months following diagnosis I struggled to come to terms with what was happening.  I went and spent some time with my parents without my wife & kids being there.  It was during this time that I began to realise that I couldn’t remember an awful lot of how my mum was before she started to become ill. I remember her face, I remember her smell but I struggle to remember her personality.  There is a sizeable age gap between my siblings and I which means that I didn’t get to spend as much time with my mum as them and as such don’t remember as much as they do. I left home at 18 and moved to Wales with my then girlfriend.  I stayed there for 7 years and only managed to make it home a handful of times, my relationship at the time wasn’t happy or healthy and I found myself distanced from my family and from time with my mum. Looking back at this I realise that this was prime time that I should have been spending with my mum, time I could remember but I didn’t.  I rarely regret anything but this is one element of my life that I do sorely regret and one that will stay with me forever.

About 18 months ago I realised that I had been grieving for the loss of my mum, not in a physical sense as she was and still is very much alive and kicking, I was grieving the loss of the person. I was upset that my children who were still really little would never know what my mum was really like.  I was upset that my wife had never seen the real mum or that I could share the happy family that I was creating with her. I still love her like a son but I can clearly see that bit by bit she is being taken away.  There are parts of the old mum that shine through the moments of confusion and upset but they only last a few minutes and they are gone.

I also feel guilty that I cannot be closer to my parents to support them in what they are going through.  I talk to my dad a few times a week but it’s not like I can go nip round and have a brew with him.  I try to visit as regularly as I can but on average its about 5 times a year.  This part of the illness keeps me awake at night.  No matter what I do I cannot shift the guilt of not being there to support them and I feel that I am missing out on the little time that my mums personality has left.

So what about my mum then? I’ve talked about how this has affected me but what about her?  Well, she is pretty much blissfully unaware as to what has/is happening to her although she does very occasionally have moments of clarity where she refers to her illness in her brain.  My mum has reverted back to approximately 1968 – 1972ish and has developed a really wicked sense of humour with my dad being the butt of most of her comic out bursts, only last month she shouted out in a crowded shop “where is that fat git?” followed by “you’re a prick you are!”, truly hilarious. My mum has lost the ability to write and has the reading age of a 4 year old, she has developed a dress sense of the 1960’s and we have had to stop her buying mini skirts and boob tubes as she isn’t as slim as she used to be.  Mum looks in the mirror and doesn’t see the woman staring back as her true reflection, instead she see’s a very younger version of herself.

The TV is a thing of mystery to mum as she believes that what she is seeing is real, at Christmas we had to explain about 20 times that the bailiffs weren’t coming round for her stuff as she had been watching a program on them.  My mum still recognises most of her kids but does get confused between myself and my dads brother, despite me looking nothing like him (I’m the spitting image of my dad) and about 1.5 feet taller.  My 2nd eldest sister gets forgotten sometimes with her daughter being seen as my sister.  All said and done though she lives a peaceful life happy in her own world.

Being unaware is the only saving grace of this shitty illness, the actual patient knows nothing about whats happening.  It’s the family that support and surround them that it affects most and that in turn leads to the stress of having to put on a brave face whilst you watch one of your loved ones slip away.  Nobody knows what the future holds for my mum all I hope is that she continues to relive her youth and the happiness that she so clearly finds in doing so.

The end

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