Alzheimer’s and how it destroyed my whole family

This isn’t the sort of thing I usually write, I will be writing more soon – But i felt I had to get this out of my head and my fiancée said that I should definitely publish it, I was 50/50 about doing so, but then you’ll probably not read it anyway – ho-hum! deep breath, here we go..

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Not Terry Pratchett (Yesterday)

I wasn’t sure about writing this but since I watched the Terry Pratchett Documentary “Back in black” on BBC iPlayer it’s all been rattling round my head like a jar full of angry wasps – and that fear is back, It started with Trump (and doesn’t it always) – but I constantly have anxiety I am going to get Alzheimer’s like my mother, I saw the disease ravage the woman who bore me and taught me how to human and had more influence on me than just about anyone I have ever known. You might think I am a drama queen for worrying every time I lose my keys or can’t remember a word thinking, “Oh my god, it’s started… Alzheimer’s!” but I can’t help it – it’s the way my mind works, its like using google to check what the spot is, it jumps to Cancer, Aids or Dementia first – forget acne or a skin infection, worse case scenario every time!

I have struggled with depression a lot, you can tell when I am depressed, I look grumpier than usual – and I have probably shaved my head too, the two go together, I have no idea why – but the first thing i do when I am at my “downest” is whip out the clippers and give myself a baldie cut, work that one out! Anyway I kept forgetting words, having trouble at work a while ago and went to the doctor’s sure that I had early onset dementia – I had convinced myself it was the case, my memory has always been terrible – I can remember maybe 4 things from my childhood before the age of 16, If i sat and really concentrated like REALLY hard and thought it might be more, but not much more! I always wish I had kept a diary – but after putting 4 birthdays in it the diary would remain untouched till i threw it away in March, I never kept anything attached to my history or childhood, I have a three-month rule – if i don’t use it within three months, it goes to charity, landfill or I give it away.

There is only one exception to this rule and that’s my boxed ZX Spectrum, not my original one (I never had a rubbery key one, I started with a +2) – I bought this 3 years ago at Christmas for myself, I never touch it (hardly) but it’s there. I am getting off track (This will probably happen a lot) I went into see my Doctor, a nice guy from Holland who explained Alzheimer’s doesn’t have you forgetting words or where things were, but it’s when you forget how to do things – He did some memory tests which I managed all ok except for the maths one, I had to count back from 100 subtracting 8 each time, and I couldn’t do it – I don’t maths, I have never mathsed… I hate maths! He assured me it wasn’t early onset dementia, it was normal – I put it down to my depression and anger and just left, not reassured so much as resigned to “Well I knew it was Alzheimer’s, but the doctor never listened to me!” – I could feel smug for as long as I could remember it taking place, and then forget it when the disease finally did me in. That however didn’t happen, Things got better – I slept more, didn’t drink quite as much – and I evened out and my hair grew back and it was all ok.

On to the main flow of the story though, I still do fear the spectre of dementia all the time, I was trying to decide to watch the documentary though – Incase it brought back all the stuff with my mother – and I wasn’t sure Paul Kaye could do Terry Pratchett justice – on the trailer it seems like a caricature of him, but I needn’t have worried about him doing Terry Justice – Paul was excellent, the guy I remember as kid pissing celebrities off as Dennis Pennis seems to have made a bit of a name for himself playing oddball characters on TV and Film and he did Terry with serious warmth and seemed the sense of fun Terry had (at least to me) and the twinkle in his eye, I know the real Terry was a curmudgeon most of the time, and that’s fine – So am I – I can relate. However the feelings and memories about my own mothers eventual death all came up and started rattling about in my head, and that is why I am here, I need to get them out – these words may never see the light of day, but getting it all down will help.

Backstory

Not my family (Yesterday)

Firstly you need some back story about my family – It’s a bit of a weird one, to be sure – but it was normal to me, I had never thought about it when I was young, I just accepted it I didn’t even really notice it – if you live “in” it, its normal. My Mother and Father were both Forces people, My Mother’s father was in the Air Force – and my Dads family were all Army – they all travelled round the world living and being born in mysterious and way off places (or Swaffham in my Dad’s case – and Hunstanton in my mothers) My Dad met my mother on an airbase or something, I never got the full story, I was a kid and not interested – She was a single mother of three boys and two girls – and he was a soldier, she was a lot older than him (in fact only a few years old than my oldest half-brother Gareth (as I knew him) or Mike, As was his real name. I never knew anything about my Mothers first husband – I can remember living on Spring bank west as a child with my full sister (Who was a year younger than me) and my Elder half-sister Julie who my dad had brought up as his own since my parents whirlwind romance and subsequent marriage.

Apparently people looked down on my parents relationship, my Dad was too young and he was taking on too much – I get the feeling that was what everyone thought, but they easily proved them wrong, I lived in a happy home – my Mum and Dad had a good relationship, they had pet names for each, were always humorous – plenty of running jokes, It was happy – we never had much – I didn’t realise how poor we were till I look back, My Dad had a decent job, and until we moved down to Suffolk when I was 8 my mother had a decent job too – but they sold the house and moved down south and me being 8 had no choice to but to leave with them (although I do remember packing a pillowcase of stuff and running away from home when I was 6 for reason unknown, I was captured round the corner on Walton Street by my half brother Graham who happened to be driving past in his Hillman Imp and spotted me, had he not who knows if I would have even been here to write this?

I do remember huge arguments before we moved, with Julie, she was having a relationship with a guy – who my parents seemed to think was not good enough for her, it caused a lot of disruption – but It never really bothered me (I was 8, why would I care?), I only sort of found out about later when I lived for a while with Julie and her husband before they split up for good. She moved out and secretly made plans to marry Steve – My eldest sister Elizabeth (named after my mother) had moved out years before. My older step bothers (Twins Geoffrey and Graham) were in the army and my older brother Gareth had left to be a diver for the gas companies on the rigs.

My father had taken on all these kids with all their problems (although the boys and to a certain extent Elizabeth were all too old) but he brought Julie up as his own as far as I was aware, it seemed like a happy family.

We moved about down south as my dad became a prison officer, and we saw my step brothers and sisters from time to time and boxing day we always got together at one of their houses – it was a tradition that kept on going for years as far as I know it goes on now – Although I have never been invited.

Moving on…

My parents called me down from my room one day when I was 19 Years old, and they said they were moving, my younger sister was at uni and apparently my Father had got a posting back down south to Norfolk (where he is from) – to work at Norwich prison, and informed me they were buying a bungalow, and I was welcome to come with them if I wanted, but they made it pretty clear it’s not what they wanted (I don’t know if this is true or hindsight, It’s always a bit foggy at the best of time, but hey Its how I felt) but I agreed as all my friends were up here, and I had a part-time job, I would stay here – so they paid a deposit on a room in a shared house in Hull for me, helped me move in, and then they left – and we sort of lost contact.
I have never driven, which means I miss out on a lot, I don’t get to see my dad as much as I would like – I have not been able to progress career wise the way I had envisioned because I can’t drive – I just can’t do it, its like maths – Other people seem to do it as easily as a simile for something that’s really easy, but I never could get a handle on it – I have no clutch control, if i drive an automatic my spatial skills are all to shit, I just can’t even, so I don’t.

I still called my mother occasionally on a Sunday to catch up, I have never been really close to my Dad – he’s funny but he is very quick to anger – and he is stubborn as a barrel full of mules, and even though he looked after us and was a good Dad he was never loving or tactile, I put that down to his relationship with his Dad, it wasn’t good – his dad too his savings he was saving for a motorcycle and used it for something and my granddad had told him to “consider it as board” he never forgave him for that, they stayed civil, but my Dad held a grudge, I don’t know if it was the war (My Grandad was a commando, or just because it was the age he came from) but my Grandad was aloof too, maybe it was genetic, I don’t know.

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Me (Yesterday)

I loved my mum, she was always there for me, she gave me not only life but my love of books and art – she was fierce too I saw her punch out a prisoner for swearing – My mates called her “The Almighty Earth Dragon” she could be scary (as mothers can be) but she was lovely too, she encouraged me to do or be anything I wanted unless I wanted to be Transgender – she didn’t like that idea AT ALL, but it was the 80s back then it wasn’t as accepted as it is now, I guess she was worried about me – and probably ashamed, but we’ll skip over that, eh? I got my work ethic from her – Unless i was dead I would work I never missed school – I skiived TWICE and she caught me both times, I only ever got one over on her once – she was clever and wiley and she would protect us all to her death, I knew this for sure.

The Cracks begin..

On a call to my parents once my dad answered, my mother who got migraines every so often was apparently having one we chatted I asked how everything was, he seemed a bit off, I asked him what it was – he said he was worried about my mother, she’d always been forgetful – she lost her purse all the time and it usually turned up in the fridge, it was a running joke – but there had been certain things she had been doing that worried my Dad, he didn’t really want to talk about it, but he said they were going to see a doctor – but I wasn’t that worried.

About the same time it became clear my Dad was struggling with depression, he had a total breakdown and was having panic attacks – I didn’t know it at the time but my mother was diagnosed with Early onset Alzheimer’s – not only was my dad coping with a new computerised system at work (my dad and technology mix about as well as Jellyfish and Mainframes) – He just could cope, He apparently wrote “SHIT” on all the Bull computers in the hospital and stormed out, after a short break from work, he had a panic attack on the way to work and couldn’t go in, so they pensioned him off – and he left.

I was powerless to help stuck up here in Hull with no car and virtually no money and a family of my own to look after, I could only help on the phone and talk to my mum who apparently was losing her marbles quicker than expected.

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I loved this T-shirt (Yesterday)

Me and my full sister never really got on since she was born – we did a bit sometimes, but for the most part she was a self-centred entitled snob and I was a bit of a grumpy twat who had a bit of a wild side – not breaking the law as such but I always liked to drink – I smoked and listened to heavy metal – I had a VAST collection of pornography too – this was when i was in my teens tho, that’s when she was at her worst. I remember spoiling her 18th birthday when i punched her in the stomach when she had been abusing me and pressing my buttons (she knew implicitly how to do this on the quiet and get away with it) The last time i remember really crying was when I was 15 – she was being interviewed for something (I don’t remember what) and she said I wasn’t allowed in the house because I was “An embarrassment to the family” – Academically she’d always been straight A’s but she was lucky – she could CRUISE through academia effortlessly, I however struggled with maths and spelling – I worked like hell to get an O level in English and only managed to scrape a C – I went to college a year later and worked even harder and only got a C again, I was an average student even when I tried my best.

The last time I saw my mother was at my Sister’s wedding, I actually got an invite (Surprising) she was marrying a policeman – she had joined the metropolitan police when she dropped out of Uni and left a shoe shop in Birmingham, when she was in the police she was at my house visiting there was a programme on CH5 or something – a black woman was selling a pink Barbie jeep and the presenters were helping to buy her a more suitable vehicle for her mobile beauty business – but my sister piped up “She’ll never sell that she’s probably been dealing drugs out of it.”
I looked at her in disbelief, “What??”
“Well she’s black, she probably deals drugs, They all do, it’s a cover.” This was my Sister, a police officer – I threw her out of my house, “When did you get so politically correct?” was her retort whilst leaving.

At my sister’s wedding my mum had a few Gins, she rarely drank, she seemed fairly “with it” at the time, but she pulled me to one side at the reception, “You see those two?” pointing at her sister and husband,

“Yeah Mum.”
“You should get in with them, they’re loaded, Millions – no kids.”

I was confused – I never did get in with them, I don’t know what happened to their millions, whoever got them, hope you’re happy! (It was probably my sisters – they like money! more of THAT later.) The other thing my mother did, there was a small ante-room on the way to the Women’s toilets (like there are in most toilets) she had walked into that room, got confused, and just pulled her knickers down and just went there – She apologised and red-faced, said she couldn’t find the toilet.. but I knew she seriously wasn’t right.

Then I heard a rumour from Julie that my mother was convinced that my Dad was sleeping with the next door neighbour – Jean who was a friend of my parents – My sister confronted my Dad, he swore it was bullshit, he said that our mother had tried to pack his bags and throw him out of the house, saying he was a stranger and she didn’t know who he was – and kept asking where he first husband was (He died in an airplane crash hence why my mother was a widow) – My Dad couldn’t cope, the woman who he loved was gone, and he had mental problems of his own, and what if he had slept with Jean? I had an argument with Julie about this – Why should it matter if he seeks solace elsewhere?? The woman who he loved was trying to throw him out of his own house, she didn’t recognise him, He assured us that he and Jeans friendship was platonic, Jean looked after my mother often, she was a good friend to her – my mother was batshit, but they took her word over Jean and my father – I couldn’t believe it!

Coming home…

My Dad finally put my mother in a home down in Norfolk, from what I could tell he wasn’t happy with it, it was apparently really bad conditions and he was looking for somewhere else, as my family mostly lived up here it was suggested that they look up here, they found a place they liked on Bransholme and moved my mother up there – and this was the first time I had seen her since my sister’s wedding and it nearly broke me.

The tall strong woman with dark curly raven hair was gone – she was little more than a skeleton with grey hair, barely recognisable to me – You know how some people with Alzheimer’s get happy and clappy like a baby when they cease to “function”? Not my mother – she appeared to me to be in agony, her arm shook constantly, she screamed occasionally – I felt sick to my stomach – I took her hand and spoke to her, that seemed to relax her a bit, I looked into her eyes – they were cloudy – not the blue I remembered, there was no sign of recognition in those eyes at all, I knew then she was gone.

She was moved again because of stealing and bad conditions and terrible care to two large Victorian houses converted into a nursing home – it was just round the corner from my house, I went to visit her every Wednesday afternoon – All those times she never spoke to me or showed the slightest recognition, the place smelled of wee, I hated it, but i went – for her, she still seemed to be in agony, I couldn’t believe that in such a short space of time she had been reduced to a shadow of who she had been.

It only came out later that they had tried to book a flight to Switzerland to get her life ended when she was beginning to lose it – so she could have assisted suicide – I have no idea how hard it was for my Dad when this was going on, or for my poor mother – This is why I have nightmares!
My mother was on a DNR, she kept being rushed to Hull Royal with Bronchitis, giving huge doses of Antibiotics and then ferried back – I could not understand why they were treating this piece of meat that used to be my mother – but my sisters were adamant she still had good days, said they were sure she recognised them, but i thought it was wishful thinking, I felt like screaming at them, why are you making this awful situation continue? If you loved her you just let her go… but they didn’t.

I got a call from the hospital one night saying that we should come and say our goodbyes to my mother, her bronchitis was back big style and they were sure she wasn’t going to make the night – So I did, my sisters were there with assorted kids, they put a baby in her arms (I don’t remember which) and took a picture – my mothers face didn’t even look human to me anymore – just a reflection of the person she used to be, they placated themselves saying that she recognised the child and them, I saw no such thing – and they blasted her AGAIN with more antibiotics and against all odds she got better again and went back – this kept happening, I questioned why they were even giving her antibiotics, why not just let her die? but apparently that’s not what her DNR meant – so it dragged on, 3 more times till she finally passed, I missed the last one, but I didn’t care, by this time I had had enough.

The Day the Family Died

Cottingham Road Crematorium (Yesterday)

My mothers funeral took place at the crematorium on Cottingham road, It was a simple non religious service as per my mothers wishes, she wasn’t at all religious and neither was my Dad, he cried a lot, I never did – I was numb I had been for a pretty long time, eventually I said my goodbyes and left, my Dad has left earlier without saying anything to me, I had no idea why, but I was about to find out.
Straight after the funeral my Dad was met by my two step sisters who said that my Dad had to freeze his bank accounts and sell the house, half it and everything that was hers was theirs by right – it was something like out of a Dickens book, not only that, they had asked my Dad at the ceremony where my Dad was going to dispose of my Mum’s ashes, he said that he was doing it here in the memorial garden, they had said my mother hated Hull, and she wouldn’t want to rest there – my Dad had had enough by this point, “Do what the fuck you like, I’ve had enough I am going..” he said – Apparently and left…

Aftermath…

My Dad was very angry with my sisters and the rest of the family he thought he had been unfairly treated, and I had to agree with him, going through all that – bringing those kids up as if they had been his own, and being treated like this after losing the woman he loved?
One day I was coming in from the shops and I found a note on the floor (this was about a year later) and it said “I called in but you weren’t in, call you later, Love Dad.”
Now my Dads mental health issues aside, he has COPD and Emphysema – and he hates Hull – he said he would never come back to Hull ever again when he left the last time, and this note out of the blue shocked me so I awaited his phone call, the call came later that day…

“Hi Dad, what’s up?”
“Hi Son,” He said, clearly upset from his voice, “I just got home, I am knackered.”
“So i See, why were you in Hull? You should have told me!”
“Oh it was a last-minute thing, I got a call from the crematorium, they told me if I didn’t pick your Mum’s ashes up they would dispose of them.”
“Hold on, weren’t the girls supposed to sort that?”
“Yeah I thought they had, after the shit they gave me, I can’t believe it… I was so pissed off I just drove up and got them.”
“Ahh ok… sorry man…”

The conversation went on, he was clearly upset – but he would come round, he said he would sort something, he told me he loved me and hung up, that was weird – he never said that, it marked a change in him, I have seen him since – he’s opened up a lot, tells me he loves me – and when I get a hug from him he actually seems like he means it.

Some time later I get another upset call from my Dad – he explained he took my Mum’s ashes to a place they used to hang out walking on the river, he had taken pictures – made a plaque, attached it to a tree, he had made a map and DVD of the pictures and sent them to everyone in the family – when my youngest sister had got it in the post she rang him livid,
“How dare you spread my mothers ashes without me there you cunt!” – was part of the conversation, My Dad had to hang up three times on her – they have not spoken since.
Not only that – My niece (Julie’s Daughter) went to see my Dad while she was passing, and they had a drink, she could see my Dad was upset – when she asked him what was wrong, he said his girlfriend of (some indistinct amount of time) had split, and he was annoyed. When she went home upset she told her mother, apparently this amount of time meant my Dad was seeing Jean (as it was her) while my mother was still alive, so clearly she was right ALL THE TIME – she disowned my father and called him all sorts, I tried to explain to her my mother was gone long before she actually died – but that cut no ice with her, she wanted none of it.

The abuse my Dad got after that made him want to sell the house they shared, he never felt like it wasn’t home anymore – he told them he was selling it contents and all, they had 2 weeks to come get whatever they wanted – or it would all be cleared and like vultures they descended and emptied the house – my Dad bought a boat and never spoke to any of them again.

Epilogue…

I keep in regular contact with my dad, at least once or twice a week we talk, my sister sent a letter to him on his 70th birthday recently wanting to keep in touch, but she said she had been too busy to put pictures of his grandchildren in (apparently she’d bred since) and there was no card, My Dad is writing back to say thanks but no thanks, I don’t speak to anyone else in my family anymore – I don’t know if it was just my mother holding us all together – if she were the glue that bonded our family unit or if it was always destined to be so, and that’s one of the reasons I don’t remember like other people – I can’t reminisce with people about that time my Uncle whatever did what whenever, because I don’t remember – and nobody is around to remind me, However I remember my mother as she was – strong and clever, witty and funny – not how she became, I try to forget that, and I hope to whatever powers are out in the cosmos that never happens to me, or you, or someone you know – because it’s a big load of shit.

Well that’s not a happy ending or fun is it? I felt I had to get this down, it’s been bothering me for ages now, but do definitely feel better now it’s out on a page and not in my head keeping me awake, if you or anyone you know has been affected by anything contained in this post, I feel sorry for you, I really do – it gets better

– I promise.

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3 thoughts on “Alzheimer’s and how it destroyed my whole family

  1. Thank you for writing this Rich, and I really, really hope that it has been a “cleansing” experience for you. I could feel your pain and worry, and am now beginning to understand you a little better, I hope!!
    We are all, as you are no doubt aware, products and possibly, victims, of our upbringings. Plus the crap which life throws at us. It’s how we deal with it which makes us the person we hope to become, healthy, happy and whole.
    Be of good spirit, you have another “family” which does and will support you to the best of each ones’ abilities.
    May all your tomorrows be better than your yesterdays. XxX

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