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LucyGransnet (GNHQ) Thu 26-Mar-15 14:59:12

A stolen future

Erwin Mortier's mother's life changed overnight after being diagnosed with Alzheimer's disease. Here, Erwin shares the moving story of her deterioration and the loss of the happy years together his parents had envisioned when they retired.

Erwin Mortier

A stolen future

Posted on: Thu 26-Mar-15 14:59:12


Lead photo

Erwin Mortier

My mother was not yet sixty when she was diagnosed with Alzheimer’s disease. The news came as a terrible blow, for all of us, but especially for my father. He had just retired at the time. He would spend time with his children and grandchildren, he and my mother would enjoy life and its pleasures without my dad having to wake up at half past five in the morning to catch the early train. We all felt they deserved it more than anyone. They had raised five children and given them opportunities they themselves had never had, and by nature they were generous and welcoming people. We rarely sat for dinner with just the seven us. There was always talk and laughter, the mundane blessing of human company. Mum and Dad were set for the splendid Indian summer of their lives, we thought, but it was not to be.

We also thought we were prepared for what would be coming our way, once the neurologist had given us her verdict. Mum’s mind would gradually deteriorate, her speech and memory would go, and not only her memory of language. She would also forget how to use cutlery, or the buttons and zips on her dresses, or how to tie her laces. And she would, eventually, forget everyone she knew.

When after four months her condition became more or less stable, we felt as if we had survived a shipwreck.

We were not prepared for what actually happened. The first few years the disease seemed to stick to the textbooks, but in the autumn of 2008 it suddenly struck with full force. Within four months our mum was reduced to a shadow of her former self - which is a euphemism. She didn't simply lose her speech, she was losing it by the bucket. Her memory wasn't fading, it was leaking away, day by day. She had to be fed, she had to wear nappies. She'd wake up at night and slept through the day. We were devastated - another euphemism. We were scared, angry, sad and desperate (and so was she, as she mirrored our emotions). We were grieving, even mourning her while she was still with us (but who was it, who was still with us?). When after four months her condition became more or less stable, we felt as if we had survived a shipwreck.

We have had episodes like this quite regularly since then, each time followed by calmer stretches, each of them leaving my mother a little more diminished. We celebrated her 72nd birthday last winter, at the home where's she staying now (she enjoyed the cake), and their fiftieth wedding anniversary (she slept through most of the party, in her wheelchair).

We will never get used to this terrible disease and what it is doing, but we're adjusting to it, and there are many friends around for comfort and support. My mother may have grown silent forever, but thanks to the great talent for friendship that once was hers, we can do something she herself is no longer capable of: to remember her, and the happiness she has created.

Erwin's book Stammered Songbook: A Mother's Book of Hours is published by Pushkin Press and is available on Amazon. You can also read an extract from the book here.

By Erwin Mortier

Twitter: @PushkinPress

jollyg Thu 26-Mar-15 15:27:22

Many folk living in damp houses, rickets, working working down mines, TB did not have the priviledge of old age.

Thinks have changed with modern medicine, and I do think we expect the magic bullet to do the needful. Gps and hospitals ditto.

My Dad died at 60 and grandparents were not long after, tho did have a 'reasonable' comfort lifestyle. Ma hung on, was widowed longer than married

annsixty Thu 26-Mar-15 16:41:58

Just because other people have difficult lives does not negate what Erwin and his family feel jollyg.
My DH has Alzheimer's and we are fortunately still in the early slow stages, it is still devastating and the thought of what WILL and not MIGHT happen in the future is terrifying to us both.
I send my very best wishes to Erwin and his family and anyone else facing this.

jinglbellsfrocks Thu 26-Mar-15 17:22:13

GransnetHQ - bad choice of days to put out a misery blog. hmm

Do we ever need them, in fact?

(That's not to say I have no sympathy for sufferers. But - please!)

jinglbellsfrocks Thu 26-Mar-15 17:25:07

Oh yes. Just read previous post. I guess it helps to share these things. flowers annsixty. Hope things don't get too bad for you and yours.

annsixty Thu 26-Mar-15 17:28:18

I'm so pleased your life is so good that you don't want it spoiling by hearing about other's misfortunes Jbf sad

annsixty Thu 26-Mar-15 17:29:27

Thanks jbf I posted at the same time as you.

elena Thu 26-Mar-15 18:28:09

I found this post to be moving and succinct - and while sad, it's lovely that the family can remember the happiness this lady created. Isn't that a great thing - to create happiness?

NanKate Thu 26-Mar-15 19:47:18

How desperately sad for Erwin and his family.

I hope my next comment does not offend Erwin or Gransnetters, but I have a fear of getting Alzheimer's (I suspect my great Aunt had it) and I feel very much as Sir Terry Pratchett did, that I would not want to put my family or myself through the traumas of me fading away and becoming a vacant body who needed constant care.

I only hope if that ever happens I have the guts to do something about it. sad

Goldbeater1 Sat 28-Mar-15 04:57:36

Easier said than done Nankate. If you have dementia you probably not going to be capable of 'doing something about it'.

The original post for this thread was succinct and moving and the title 'Stolen Future' made it clear that it wasn't going to be a jolly read.

My own mum has alzheimers and it isn't just the disease that hits hard - its the horrendous bills and expenses that come from it. I'm not wanting to inherit a penny from mum, I just want her to be well looked after ... but like many others I may end up contributing more than my time when her money runs out.

For the original poster I would like to ask, have you tried the forum on the Alzheimer's website, called 'talking point'? The people on there are all in the same boat, non-judgmental and generous with practical advice as well as moral support.

GrannyGear Fri 10-Apr-15 22:16:38

The only bright point I can see in all this is that people now talk more openly about Dementia and Alzheimers. Our local library has a Dementia cafe once a month set up by a lady whose husband died from Alzheimers.
If people are prepared to talk about it and raise funds for research eventually a treatment if not a cure may be found.
I've no direct experience of this terrible condition but can only sympathise with the partners and families of those involved.

Cagsy Wed 22-Apr-15 15:54:48

How sad, what a terrible, destructive disease that we seem to have very few, limited treatments for. To see this happen to someone you love must be heartbreaking , I'm glad your Mum has such a loving family.

hildajenniJ Wed 22-Apr-15 16:56:23

My Dad has "mixed dementia". Vascular dementia and Alzheimer's. Every time I visit him now there is just a little less of the man I used to know. His speech has deteriorated to the point where he cannot find the right words, and what comes out is usually quite garbled and sometimes unintelligible. He is also shrinking physically. I am so glad that my mother is not here to witness his sad decline. He is very well looked after in the home we found for him, and appears happy there. His own mother suffered from dementia at the end of her life, so I will not be surprised if it is my fate also.

rubylady Thu 30-Jul-15 02:13:41

It is horrendous. My dad has vascular dementia. I just make sure I see him as often as I can and do the best I can for him, creating my own memories along the way. We do laugh a lot though too as he still has a wicked sense of humour. I have also bought some photo frames to frame the photos of him at work he keeps near his tele which are out loose. I can then put these where he can see them clearer. Also I am going to copy and frame a photo of us both on my wedding day, nearly 30 years ago outside church when he was only about 46. He did look smart in his grey suit. They might keep some memories alive for him though.

Time will sadly tell. No matter what age we are, we don't want to lose our parents. My thoughts are with others suffering. Keep your chin up. flowers

SalJB Thu 13-Aug-15 08:00:43

How can I persuade my Dad, 91, to have a carer come in to help Mum, 86 with Alzheimer's, get washed and dressed properly?
He is her main carer but he is not really coping with her personal care. I've tried to persuade him but he says they can cope and doesn't want someone in the home. It's obviously his decision but it's a constant worry for me.
I go over two full days a week to do jobs, cook, clean, wash her hair, cut nails etc and they have plenty of money to pay for a carer. Any ideas?

Liz46 Thu 13-Aug-15 08:40:21

SalJB have you had any help from The Alzheimer's Society? A lady came round to see me when I was looking after my mother and was helpful.

My 91 year old aunt is living alone and didn't want anyone other than her daughter to help her. Her daughter was trying to look after her mum and hold down her job. The problem was solved when a distant relative offered to help (she is paid).

soontobe Thu 13-Aug-15 11:47:00

Are there people he knows who have carers in?
Would he be able to speak to them to know and understand what it entails?
It is the sort of thing that once you have them, you dont generally want to go back to not having them.

Clematisa Sat 29-Aug-15 13:31:32

My dad had Alzheimer's and Parkinson's - I'd always thought till then that people with Alzheimer's didn't know what was happening to them. But he used to say to me "I wasn't always like this was I - what's happening to me?" Since then I have read a great book that helped me deal with the memory loss my mother suffered later in her life - diagnosed with Lewy Body Dementia. I think the book was called Contented Dementia by Oliver James - I learned to stop asking questions and start listening to where mum would take our conversations.

FarNorth Sat 29-Aug-15 15:28:47

SalJB you say he is not really coping with her personal care and that you already do a lot.
Have you made it crystal clear to him what the problems are and that you are feeling desperate as you are already helping as much as you can?
Although you naturally want to respect his wishes, I think he needs to face the grim facts, and do something about it, or allow you to do so.

Solitaire Sun 08-Nov-15 06:16:28

Saljb, you could try to find a suitable carer and introduce her to your father as someone helping you on the days you visit. Then when he has become used to her in their home, she could take over tasks when you're not there.(A female will probably be more acceptable to both parents.). Your father could benefit from her support too. Good luck x