My special Mum: snapshots of advanced dementia (our journey together)

Big Effort

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Jul 8, 2012
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Dear All You Wonderful, Wonderful People,

I have decided it is time for a new style of thread for me. One where I record Mum's and my journey through Advanced Dementia together. Right now I imagine posting snapshots, moments in time, so that when (if?) the going gets too tough, and I just can't do this any more, I will be able to read back and know why I failed to keep Mum at home to the end.

As always, your thoughts and comments are more welcome that I can say.

Sunshine, Watermelon and a Pair of Scissors
Snap-shot 1

Looked out when I got up and saw Mum was already on the patio, up early because she has no idea at all of time, or how to even guess at the time of day. Sitting, head bowed, her new posture, with a halo of white hair, and a sense of withdrawal that I find so new and disconcerting.

Hunger as so often beats an impatient drum. Off she goes scavenging, looking for something. Back with half a watermelon that she found in her fridge. Cool, raspberry sherbert blush with a deep green skin. Yum. But how to get at it.

Mum is resourceful. She has brought a pair of scissors with her. So she gouges out chunks of flesh - no knife. Does a knife even come to mind when she wants to cut something? No, in my experience, Alzheimers robs Mum of entire concepts. They disappear. She doesn't think in terms of knives or scissors, she wants to get at the juicy flesh, and any implement will do.

My precious husband strolled over to her patio (she lives across the road, our road) and gave her a cup of tea. Mum has polished off three slices of watermelon (pre-cut for her) and has savaged the remaining half.
"You are up bright and early", says he, giving her tea.
Am I? is clearly mirrored on her face, but when she feels criticised or in the wrong, she can speak fluently - such a contrast to the odd words she otherwise manages to produce.
"BE said to get up early...... sitting on my knee", says she.
Of course it is my fault - she is so quick off the mark to shift blame to me. The knee comment is a typical example of her speech patterns now. Random stuff, meaningless to me.

square_watermelon1.jpg

[Note: if these watermelons appear square to you, then you have spent longer than you think in a world gone haywire!]

What I used to call the Dementia Walk has become a Dementia Trail..... everywhere there are signs of bizarre behaviour. The tea towel I washed yesterday now lies in her fridge.

Several unused tissues strewn about.

When I walk from my house to hers, I feel her gaze upon me. It is guarded, not friendly, she sees me as an opponent.
"Morning Mum", I say brightly.
But this doesn't fool her. I am the one to watch. The "horrible woman" behind all this upset and chaos that we 3 now call everyday life.

For much of the morning I feel great sadness within me. Mum, the cook, the author of a cookery book, digging into a watermelon with a scissors? This evidence of how much she has changed really, really saddens me.

And then there is this persistent feeling of tiredness. Sometimes I am so tired when I wake in the morning, that I wonder if I actually got any real sleep. And I feel fragile, a bit like I felt when I had that amnesia stint, just so fragile. Distress hangs about in my abdominal area. Some part of me know that this is very, very bad. I am hanging on by a thread. And this wasn't the deal. I am a strong, resiliant, resourceful person. Patient, endlessly supportive. There for Mum. But I have to admit that, while I sailed through mid-stage dementia, real in-your-face dementia is knocking the stuffing out of me. I honestly never imagined anyone, let alone my mother could live a life like this.

I am reading the novel "Iris Murdoch", a romance and Alzheimer story of a loving couple. Some of what he writes destabilises me. Things like Alzheimers being like a corpse, a corpse that drags us all down together. Not sure if this book is the right reading for me in my fragile state of mind.

But the author writes of humour. Mum is like Iris, she understands jokes, humour and she laughs. How on earth does she understand wit and subtle banter, when she can't understand a simple phrase or instruction? But this is a fact. It puzzles me.

Snap-shot number one complete.
Good night all. BE sends you all a much better day tomorrow than we have a right to expect.
 
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CeliaW

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Jan 29, 2009
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Hampshire
Sending you special hugs BE and many wishes for you to have a more restorative sleep tonight, I am so sorry for the desolation you feel,

Take care

Celia
xxx
 

Bumblegirl

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Nov 17, 2012
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Just wanted to say that I am so sorry that you are at such a difficult stage with your mum. You are so positive and a credit to your parents. Keep strong

BG
 

Rageddy Anne

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Feb 21, 2013
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Cotswolds
Thankyou for sharing BE, and you write so beautifully. Yes, tomorrow is another day..let's take them one at a time. I wish you energy and peace...and good sleep.
 

Big Effort

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Jul 8, 2012
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Hi Raggedy Anne,

Thankyou for sharing BE, and you write so beautifully.

If Mum were her real self, she would be thrilled to know you like my writing. Any talent with words I inherited from Mum: she was a journalist until 2 years ago, 45 years of being a household name.

Today she had to sign her name. Couldn't spell her 5-letter-surname. Spelling mistake. She just said, quick as a flash: "How do you expect me to know how to spell it when I write so seldom." To her, this was not abnormal at all.
 

Lancshiker

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Apr 17, 2013
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She's still the same person but obscured by a cloud of dementia. That's what you describe so beautifully.
 

rajahh

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Aug 29, 2008
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Hertfordshire
I send you love too BE . I saw the film Iris and cried. I have stopped reading books on dementia as it depressed me enormously.

It is as you say though watching someone who used to be articulate, and literate losing these abilities is heartbreaking. My husband was a systems analyst, and wrote programmes, now he can't tell the difference between pyjamas and day clothes, he even tried to put the jacket on as trousers.

Love Jeannette
 

piedwarbler

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Aug 3, 2010
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South Ribble
Gosh BE. What a poignant and beautiful piece of writing. You should consider having it published.
I am so sorry. I remember this stage as being the worst. Gradually mum moved through it, to a better place. I doubted my sanity very often during this period. It's tough.
Take care xxxx
 

Nanak

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Mar 25, 2010
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I echo Pieds words. I hope you are writing this down somewhere else with a view to having it published.
It would be a very interesting read.
Nanak (Kim)
 

Anongirl

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Aug 8, 2012
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Quote: "And then there is this persistent feeling of tiredness. Sometimes I am so tired when I wake in the morning, that I wonder if I actually got any real sleep. And I feel fragile, a bit like I felt when I had that amnesia stint, just so fragile. Distress hangs about in my abdominal area. Some part of me know that this is very, very bad. I am hanging on by a thread."

Hi BE. Thankyou for your snapshot. So well written.

The above quote describes exactly how I feel on a day to day basis. That feeling in the abdomen. The intense tiredness before the day has even begun.

Much love BE xxx
 
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Wildflower

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Apr 6, 2013
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Brighton
Dear BE, You are such a talented writer, and I'm looking forward to reading more of your snap-shots to empathise with, relate to and learn from. I found it interesting, that like your mum, my dad also still understands humour, and he laughs and likes banter. He understands irony to a certain extent, and yet he cannot hold a proper conversation.
Take care x
 

winda

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Oct 17, 2011
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Nottinghamshire
Heartbreaking isn't it BE? My husband was an academic and had written scholarly books, but eventually was unable to sign his name or read anything. Nor was he able to string a sentence together.

It is such a cruel illness.
 

leedsfan

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Apr 1, 2012
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Hello BE,

To say I 'enjoyed' reaing your first snapshot may sound a little strange! What I mean is that you have put so eloquently what many of us are going through. I too empathised with that tired after sleep feeling and the distress around the abdomen.

Please keep posting on here. I read everything you send, you make such sense, Even though sometimes I have cried whilst reading I feel a great deal of comfort from you.

Look after yourself too BE. Thank you for your honesty.

Jane
 

Skye

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Aug 29, 2006
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SW Scotland
Any talent with words I inherited from Mum: she was a journalist until 2 years ago, 45 years of being a household name.

Only two years????

BE, your mum is showing such rapid progression, no wonder you're shell-shocked. I know you want to keep your mum at home, but at this rate of progression .... well, you may need to be considering the alternative, awful as it is. You have to think of your own health as well as your mum's.

Yes, the water melons do look square to me. Think I'm living in a parallel universe!:D

Love,
 

Fed Up

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Aug 4, 2012
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Hi Big E

I read this last night and it is simply a wonderful description of a fragile lady but its also a bit seeing through the glass darkly. And you are clearly mindful of your own need to keep precious memories alive. That is so important. When this disease takes hold, reason goes but the shell remains I'm not very religious but have wondered if we have souls has the soul gone and what remains is just mortal flesh soon to turn to dust. Is this disease a death without dying ? Then the soul might be on its way to its final destination and peace.
I don't know about others but your words comfort me, it is a random disease expressed through random acts and yet my mum too is lucid and at times funny. The elderly lady is not mum anymore, thats what made caring so hard, and the decision to go to a Care Home easier. My dad is in the churchyard and one day soon she will be at peace alongside him. That now is something I look forward too, not her death but her peace.

I can only echo others, you are eloquent and you should write this down for publication, it will offer comfort and humour and an insight into the suffering of the carer who can only watch the seemingly always destructive path of such a cruel disease.
 

flowerpot

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Jul 27, 2010
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Hi BE thanks for sharing this time with us all. I think you have described how most of us feel and it's such a hard path that we all travel. My MiL that was has slowly disappeared before our eyes but there is still part of the caring, helpful woman there that she always was and this is what makes it so sad.

Take care BE and hoping today isn't too bad for you xx
 

jaymor

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Jul 14, 2006
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South Staffordshire
A great idea BE. I kept a diary for most of our journey but some entries were very sparse up until my husband 'walked over the edge of the cliff'. Sad that I did not keep a really detailed journal of the better and not so good times.

My diary from the first crisis is detailed and I will be honest, very frightening. It amazes me that we were left to deal with it all on our own.

Now I have a little more time I am going to ask our daughter to look back over my old diaries and see if between us we can elaborate on what is written. It would become a record well worth keeping, sad but it was 7 years of our life and not all bad.

Please keep posting BE

Jay
 

Florriep

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Jul 31, 2012
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Kent
BE like others have said, I found that to be truly moving - if a purpose of writing is to touch the reader's heart, then you're spot on and I'm sure your mother would be very proud of your talent. I would say, though, sometimes the road we planned to take has unexpected twists and turns - and sometimes great boulders block our path. If you don't manage to keep looking after your mother at home, please don't regard it in any way as a failure - sometimes handing over the care to someone else is the only option for everyone's health, difficult as that is.

Hope you have a better day today.