They don't tell you these things...

Oxy

Registered User
Jul 19, 2014
953
0
Would suggest that at the very least the so intelligent and poignant thread starter should be sent to a broadsheet but maybe also one of the more sensationalist daily rags. Multi pronged attack needed.
 
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Pepper&Spice

Registered User
Aug 4, 2014
116
0
How true - let them all walk a week in our shoes and then have the cheek to tell us what we "should" be doing. WE are doing our best, pity the same can't be said of those who should know better. The things you said are so true, it's such a comfort listening to you all & knowing, on the third morning of changing the bed, nightie etc and having run out of dry bedding before a mad dash to work, that I am not alone !
 

btuma5

Registered User
Sep 9, 2014
1
0
Oregon US
Sorry I haven't got back with you I lost the board and how to post

I'm not even sure if this is going to the right reply. You're right they don't tell you a lot of a lot of it wouldn't be believed if they did. The testing does not have a baseline for the intelligent just for those of that age and education. It's geared to when the person is well down the path and we can get lost in the meantime. I'll leave as short story I wrote in hope the literary sense strikes the heart like the words of a song are nothing without the notes. It basically tries to bring all the "they didn't tell me" to the impossible process and the possibilities. If it makes sense I hope it does

Restoring by Remaining- A short story to describe the indescribable patient's trek

All of this is more difficult than I had imagined. I wasn’t given a choice. It was given to me. Now I, and I alone, will attempt to save what I can before time makes it worthless.

When you look at my task you see a large old cedar trunk that needs to be restored. In my heart’s eye I see a closing mind of dementia, and my task to appear the same. The large cedar chest still has worth, and the amount of value will depend on how well I can remove the stain.

I walked around it several times. Why? I don’t know. It was the same chest of my youth. I had walked by it each day as I went to work or to play or to visit family. You would think it would be familiar, but before it was just there and served its purpose without notice. It stored the trinkets of my childhood, the athletic medals of my youth, and the essays of my work.

Somehow the lock became jammed and the most skilled locksmith have tried but failed to retrieve its treasure. The value is inside but unreachable. My task was to make the outside as pretty as possible so someone, not knowing the treasures inside, won’t come and throw it as trash or place it in the dusted back room of an antique store with other such chests.

I stopped walking and got on my knees to feel the once fine wood. My fingers could feel more than eyes could see in the darkened room. The wood smith, creator of the chest, had skillfully lathed the wood so the corners were softly rounded unlike any other chest. This wasn’t just another chest. It was specially made, and I had to restore it.
My fingers felt the normal small dings of any old chest, but then they fell into deep gashes which years ago had almost split the wood.

I had forget those marks, but the creator made the chest strong enough to weather the wear. Then I remembered what left the marks more vividly than the moment. I saw the marks and forgot the beautiful rounded corners.
I wanted to get up and leave the marked chest. It disgusted me now. Then I remembered my task that only I could do. I needed to leave something of beauty for others to see.

At first I wanted to putty the marks to hide that they ever existed. But they did and they had, and if I was to restore the chest I wouldn’t hide what it was.

So I worked and polished and restored what could be restored. I soon found my hands were clumsy and I didn’t follow the needed steps. My efforts were futile but the more I worked the more my hearts saw the treasures inside. And I remembered.

Soon I knew others would still see an old chest, but I, but I, would know the treasures inside. I worked on for that day and now today to make what I can of that chest for others to see. Yet, it is not what others see that will measure the beauty of that chest. It is the treasure I know lie inside, and the warmth of knowing the Creator has made a chest whose beauty will never fade, and He one day will restore in even greater beauty what had been and what will be.

Finally my work made it clear. My task could not be completed by "me and me alone" but by me and Him who had created and His Spirit who does restore. I am too weak but He is strong and forever near.
 
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jeany123

Registered User
Mar 24, 2012
19,034
0
74
Durham
No they don't Drummergirl because they have no idea what it is like, how could they, you have to be there to understand, They all think they are experts when they have had half a hour dementia training,

It's very sad but true post,

I am sorry you have to go through this with your mum life isn't fair is it,

Jeany x
 

whoneedsaname

Registered User
Oct 11, 2014
1
0
Thank you

I have never posted before but I registered specifically as I really wanted to say thank you for sharing this. Before I read your post, I didn't think there was anybody who would understand to such a degree (packing bags, incontinence pads, imaginary children, social services, even the friends and family thing). Your post really resonated with me. There are obviously no solutions but knowing that there are other people (in a similar age group) out there going through something similar definitely makes me feel less alone.

My mother has had Lewy Body Dementia for the past three years. I recently read an article in a national 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 your siblings choose to become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got kids 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.
 

clareglen

Registered User
Jul 9, 2013
318
0
Cumbria
Spot on drummergirl. You sound so young too. My mum has Lewy Body but fortunately thinks I'm her mam. I know she can't help it but the dead relatives etc., get on my nerves. On another thread I found a link to these videos. They are soooo good & some about Lewy Body which tell you that the Lewy Body, when trying to move, actually makes the person do the opposite eg., trying to get them up off a toilet.
http://www.youtube.com/watch?v=WRC3WLSQSq8
 

Miss Polly

Registered User
Feb 12, 2014
66
0
Drummergirl, that is the most articulate and poignant thread I have read on here. And it's all so true. At least I had marriage and children before having to look after Mum. I can only wish you the very best of luck.
 

Grandma Joan

Registered User
Mar 29, 2013
276
0
Wiltshire
drummergirl
I totally agree with every word you have written. Every single comment, we have been there too. When we were struggling in Dad's last few months it felt like we were headless chickens being sent from pillar to post . No-one was actually physically helping us, just suggesting this phone number or that website or "signposting" us somewhere, I wanted to scream -regularly.
What we actually needed was one to one input from an expert who would sit down patiently and help us to understand what was happening and why and what might happen next and how we should prepare ourselves. Someone like a macmillan nurse but obviously someone with experience with Dementia. I know there are Admiral nurses but these are few and far between and not in our area. This is what I really feel Alz Soc should be raising awareness of. All these macmillan coffee mornings are really winding me up at the moment - I give generously but wish there was the same interest and provision for people living with Dementia.
Mental health Service were less useful that a chocolate tea pot, and GP's only advice was to put Dad into a home.
In order to protect our own health, Dad was admitted to a local EMI unit. It broke our hearts, and his and 6 weeks later he died.
A year on we are at peace (almost) and he is too, no more struggles.
I hope by sharing, you have lifted your load a fraction, everyone here knows how it is, even if THEY don't.
 
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Grace L

Registered User
Jun 14, 2014
647
0
NW UK
All of what drummergirl posted.... and the some....

Thank you for your post drummergirl. If only people realised.

They don't tell you your day 'starts' when your husband (wife, mum, dad etc.) gets up.
You've finally settled them into bed at midnight, but are up again at 4am, then that when your days starts.
And you have to do this with the biggest smile, and never complain that you are tired...

They don't tell you you will be sleep deprived, and when you do sleep, you will always have one ear open....

They don't tell you that Social Worker and CPN will disagree 100% on Alz/love lies.
My husbands Social Worker told me I was to tell the truth at ALL times, never love-lie...
CPN knew why I had to do this sometimes, and agreed with me. SW insisted on a special meeting.

They don't tell you how angry your in-laws will be that you called the Police when you husband has gone missing....

They don't tell you that if your husband doesn't stop the violent outbursts (that he had no control over!!) , then home care support would be withdrawn...

They don't tell you that some people will think VaD/ Alz is 'funny' ... and openly take the mick...

They don't tell you that when people 'do ask' you how you are... they don't really want to hear the truth...
either that, or they don't listen...
I had ... from SiL... "Well.... how is he?".... and before you answer.... I don't want to hear anything negative"...


And .... they don't tell you that your relationship with in laws (that you once loved) , changes forever....
They don't tell you that people who never ever see you, have better ideas on how you could care...
 
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Isabella

Registered User
Jan 4, 2014
105
0
Thank you drummer girl.

I always feel selfish for thinking this, but I was 33 when this started and I feel like not only did this disease take my mum so suddenly and viciously but it took the person I was too. My friends have amazing lives, they have fantastic social lives, that I so envy. Even though mum is in a home now and I technically can take the time for these things, something in me is different. I just find it so hard to enjoy things like I used to. There is always that worry following me around about what phone call I'm going to get next. And I wonder if I'll ever stop being so tired and sad.

And someone commented on here that when people ask how's your mum? there's no way they want to hear the truth. It's true. People mean well but they would be horrified if I told them I spent the first 30 minutes of yesterday's visit cleaning up her and the bathroom because she doesn't remember how to use the toilet.

Thank God for my Talking Point friends who understand.
 

drummergirl

Registered User
Jul 4, 2012
13
0
Thank you all very much for reading my post. I'm overwhelmed.

This forum has been an invaluable source of advice over the last few years - a lot more help than any article!

Looking after mum can feel painfully lonely sometimes, so although it is depressing that there are so many of us going through this, it is very comforting to know that there are people like you all who do understand.

It amazes, and angers me, that although there are so many people having to deal with this horrendous disease there is still such a lack of support and awareness about what it is really like. I'm sick of feeling like my mum should be hidden away just because people don't understand.

It should not be like this. I am going to take your advice and try and get my original post heard. Thank you again for all your kind words - I really do appreciate it.
 

win

Registered User
Oct 14, 2012
90
0
Thank you all very much for reading my post. I'm overwhelmed.

This forum has been an invaluable source of advice over the last few years - a lot more help than any article!

Looking after mum can feel painfully lonely sometimes, so although it is depressing that there are so many of us going through this, it is very comforting to know that there are people like you all who do understand.

It amazes, and angers me, that although there are so many people having to deal with this horrendous disease there is still such a lack of support and awareness about what it is really like. I'm sick of feeling like my mum should be hidden away just because people don't understand.

It should not be like this. I am going to take your advice and try and get my original post heard. Thank you again for all your kind words - I really do appreciate it.

Would you consider posting this on Facebook Dementia Awareness group? It is invaluable for people to learn what Dementia really is all about.
 

jeany123

Registered User
Mar 24, 2012
19,034
0
74
Durham
Drummergirl I keep reading your post, I can't think of anything more to say but all of your comments are so true,

Jeany x
 

gillybean

Registered User
Jan 17, 2007
418
0
Drummergirl

I think your posting is so poignant and all of us on here can relate and identify with some if not all of your points.

Why does it have to be this way? It's awful, just awful but we all understand on here...
 

Kitten71

Registered User
Jul 22, 2013
157
0
East Yorkshire
My mother has had Lewy Body Dementia for the past three years. I recently read an article in a national 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 your siblings choose to become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got kids 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.

No, they don't tell you any of this. My dad (Lewy body) has a relative who is a supposed expert on dementia. Even she has no idea. Every time we tell her of a struggle we've had she just says 'use your key words with him'. The trouble is, he doesn't have any key words that can ground him back to the present or a calm place in the past, because he is living in a world of hallucinations and we have no idea what he thinks he can see!

My dad was admitted to hospital and discharged without a care plan in place so I know all about those pointless meetings with social services, and endless bureaucracy and red tape. It's just never ending. My dad was scammed out of his life savings to some con man in Spain. I had the heartbreaking moment of having to tell him his money had been lost, not invested as he believed. The policeman I spoke to clearly thought I was deranged reporting such a crime and I ended up shouting at him that I was not a gold digger, my dad could stand in the street and throw his money in the air for all I cared, but I'd rather it didn't go on drugs and a luxury yacht in the Med! Two and a half years on, police interviews, statements, social services visits, bank appointments, email and telephone number changing, and we learn that a team of people have been arrested! That's really great and I'm happy that they can't devastate anyone else but too late for my dad and oodles of stress for the family.

Every comment you made rings so true, my heart goes out to you and it sounds like you are doing a wonderful job for you mum, even if it doesn't always feel like it xx
 

Rettaere

Registered User
Sep 30, 2014
232
0
Liverpool
So so true

Please get this seen by the people in the Uk,It's so true,even though I haven't cared at home and see my aunt in care home.I watch,observe,sw doctors all so wrong.They don't know what worry is,stress of over thinking,trying to make people with dementia happy.It is 24/7 non stop and it should be high lighted! Please for all the carers,for all the people with dementia.You said it as it is,send to papers.Big hugs and thank you x