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They don't tell you these things...

drummergirl

Registered User
Jul 4, 2012
13
My mother has had Lewy Body Dementia for the past three years. I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the anger and resentment that arises when family members become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got responsibilities and you haven’t, and therefore you clearly have nothing better to do.

They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you how to deal with discriminatory landlords who don’t want her living in their property because dementia has rendered her, in their eyes, a ‘threat to the community’ (but that’s a whole other story).

They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home.

They don’t tell you about any of these things.
 
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loveahug

Registered User
Nov 28, 2012
1,071
Moved to Leicester
I can't post a long response through my tears for you and everyone else dealing with this type of life, just lots and lots of BIG HUGS because that's all I can do xxx
 

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
That is what we are on here for. We don't always get answers but we get understanding.

I learnt a lot by reading and asking questions on here.

Keep coming here and sharing
Jeannette
 

Sue J

Registered User
Dec 9, 2009
8,035
Dear drummergirl

How well you express the ravages and struggles this wretched disease brings. I am sorry that you are in a position to have to.

Love and strength to you and your dear Mum
Sue
 

Eternity

Registered User
Jul 17, 2013
226
London
Your post is so moving and so true. My heart is with you

Could anyone who hasn't been through it tell us these things I wonder? A little more practical understanding from medics and officials shouldn't be too much to expect. I've virtually given up on them

I've been so thankful for Talking Point as I've learnt more here about what may happen next and read about various ideas on how to deal with things than any where else
 

CollegeGirl

Registered User
Jan 19, 2011
9,524
North East England
No, they don't and they absolutely should.

What they do is to tell you to walk away into a different room when encountering difficult behaviour. Snort! My parents live in a tiny two-bed bungalow. There's nowhere to walk to that isn't more than half a dozen steps away and where she can't follow. Locking himself in the bathroom causes her to have bruises on her hands from banging repeatedly on the door, or possibly a broken door knob where she tries to wrench it off.

And when they come to visit, eventually, to do an assessment or a review, naturally that's the day when she allows him to get her dressed without a major battle, takes her medication on time, eats some breakfast and is all smiles when they arrive, and if they are a man, shamelessly flirts with them because she thinks she's about 20 and still beautiful. So off they go, confident that he's coping just fine with this lovely but eccentric old lady, because why would you not? And they don't turn and see him through the window being bashed over the head with a chopping board, because of course the minute they leave everything reverts to 'normal'.

They have a lot to answer for.

Thank you for your post, and I'm so very sorry that you and your mum are going through this horrendous illness.
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
No they blooming well don't.
It's been four years since my mum's release and my battles for mum ended. From what I read on here things have hardly improved since then and in some cases it is worse.

I would like to add this to your post.
And they don't tell you that they often don't believe the half of what we tell them.
 
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Witzend

Registered User
Aug 29, 2007
4,291
SW London
Your post should IMO be required reading for all SWs, medics, anyone else who has to deal with dementia, and particularly for all those blasted politicians who like to pontificate about dementia, and what we should all be doing about it.
 

Tin

Registered User
May 18, 2014
4,825
UK
Maybe some of these truthful and realistic posts should be published in our newspapers.
 

Quizbunny

Registered User
Nov 20, 2011
116
Of all the dreadfully sad things I have read on TP your account has been the most moving, probably because parts of it resonate so personally. I am typing this through my tears, bless you.
 

Anongirl

Registered User
Aug 8, 2012
2,668
Drummergirl your post stopped me in your tracks. I have experienced every one of those situations with my mum. Apart from the landlord but if her neighbour hadn't had been so understanding it may have been a different matter.

Now she's in a care home and people think everything is fine. And yes she is safe, this is true. Though when they ask "how's your mum?" You know they don't really want the truth because I know it will make them uncomfortable to hear how she's now incontinent and wearing adult nappies, she can't figure out what a toilet is but knows she needs to go, she is angry and resentful of those who need to change her which exhausts her, she can't remember why she should eat, how things taste nice or even what food is so she's simply stopped eating, she thinks she's living in her childhood or that someone she loves had been taken away and being tortured, she's depressed and wants to die most days.

Yes I know no one wants to hear that, so I say "She's fine. Thanks."

((Hugs)) xxx
 

Oxy

Registered User
Jul 19, 2014
955
You have my complete sympathies. Sorry I cannot help in person. BUT this should be published anonymously and sent to our good party leaders who haven't a clue what they spout about, living in their protected capsules. All that is missing is a reference to paltry carers allowance.
All the none too bright canvassers that come to our doors about election should also be given this to read.
Last year I gave one flavour some words of wisdom and she couldn't get away fast enough as she Only knew how to pass this information on to her party. And that was only about carers allowance!
 
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marionq

Registered User
Apr 24, 2013
6,117
Scotland
I think the main post should be emailed to the Guardian which is the most reliable newspaper for research and investigative work and this whole area needs looking into and publicising. Articulate, correct and very touching I think they would gladly publish this piece as a shock to readers who pass on by normally on mental health matters.
 

cragmaid

Registered User
Oct 18, 2010
7,941
North East England
Drummergirl this is brilliant. Please will you cut and paste it onto an email to the national newspaper concerned. Ask them to publish it in the letters page or better still on the features page.....and ask them for responses from the " Authorities".

And yes......send it to all the major Political Parties too.
 

RedLou

Registered User
Jul 30, 2014
1,162
Which national newspaper, drummer girl? Which writer? We should email them with a link to this chain.
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Which national newspaper, drummer girl? Which writer? We should email them with a link to this chain.
Yes, we should. Actually it's something I think The Telegraph may be interested in too (I know.....:eek:)

And if politicians can't read the whole of TP, this thread would be an excellent start.

Lindy xx
 

halojones

Registered User
May 7, 2014
438
So heartbreakingly true drummer girl, sadly,so true.:(..I don't even read those stupid articles anymore, patronising, untruthful, ignorant press.:mad:..Go tell them the real story, get them to print how it really is for all of us.....I am truly shocked at how we are all treated by the so called authorities,, shame on them all....Bless you drummer girl x
 

tealover

Registered User
Sep 8, 2011
168
absolutely agree with everyone else's responses, drummergirl.

Huge hugs.......you have articulated what many of us just have running riot through our heads and bodies but never verbalise at all let alone so eloquently.

It has truly saddened me how many people just don't see beyond the diagnosis.

xx