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They don't tell you these things...

Welsh Colleen

Registered User
Mar 23, 2009
13
Wales
Thanks so much you have made me feel ok about lots of things - because I feel as you do and I know how hard the struggle to cope is. As yet I can't find any advice about the pulling off the nappies and how to make her take medicine. And my Mum goes up tp people in the street and asks them to help her escape!
Thanks so much for your post.
I found a really good 'sleepsuit' which stops my hubby taking his pads of at night. Bit pricey but really works. They zip up the back so the wearer can't get out of it. Washes well.
KC sleepsuits

Medicine try suggesting it's her favorite :)
 

johnkeats

Registered User
Apr 15, 2009
5
lancashire
drummergirl .your story is heart-rending .i have been in the same bad place that you are in now from the beginning to the end and it is soul destroying.take comfort in the fact that you are a good person who feels love accepts responsibility when others will not,that makes you a better person than they will ever be.take care alot of people are in your corner.
 

Ninalily

Registered User
Sep 8, 2014
2
Thank you for this. It resonates with me completely

I would add:

The don't tell you that the only advice you will get will be yet another support agency giving you their glossy booklet on what dementia is - by now you definitely know what it is - and giving you a list of support agencies who will five you a glossy booker telling you what dementia is and giving you a list of support agencies who will give you a glossy brochure telling you what dementia is and a list of support agencies who will...

love

N
 

TaraP

Registered User
Jun 4, 2013
27
You have said it so well

You have spoken the words I want to speak from the rooftops. Thanks for an amazing post.
 
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halojones

Registered User
May 7, 2014
438
I couldn't agree more with everything you said, Drummergirl, and my thoughts and best wishes are with you. I am experiencing a lot of what you talked about and particularly about the bureaucracy and people who write articles in magazines and newspapers (who are these people? What on earth do they know about the complexities and strains of caring for someone with dementia? What do they know about the feelings of utter helplessness and despair that can wash over you, the exhaustion at the relentless drudgery at times?.)

But what has caused me more stress than anything my poor old demented mother has thrown at me is the so called "support services" . you know .. the ones who are supposed to "support" us carers with coping with this devastating illness. You are so right about the frustrating endless paperwork, phone calls, emails etc that makes everything so much worse than it should be and personally has left me feeling physically and emotionally drained. Everything takes for ages, such a lot of jargonistic nonsense and hoop-jumping , it's like wading through treacle and seems designed to cause the most suffering and stress possible.

My blood pressure goes through the roof every time I come into contact with hospital staff, appointment clerks (how many times do I have to tell them not to write to her but send appointments etc to me - she won't know what it's about, it will make her very anxious, she will either lose the letter or throw it away, or will phone me late at night and want to read the entire contents to me). Also causing more problems than they should is the GPs, CPNs, district nurses, and of course the psychiatrists who don't see to have a clue and just view my mother as yet another medical experiment. Not forgetting of course social services whose staff have clearly been trained to ignore all phone calls and emails.

But the main stars of the show, the ones that push my blood pressure and patience to the absolute limit and often beyond is the incompetent, uncaring and overpaid owners of the care agencies, who are contracted and paid handsomely by the L.A. to provide a service which is generally just tokenistic and who shouldn't be trusted to look after a mad dog on a rainy night.

And of course we get the fall out from all the above and have to mop up the mess they all leave behind, while all the time trying to run our own lives, homes, families, jobs etc and also dealing with the guilt about not doing enough (even though we know we can't realistically do any more than we already are). No-one visits because they can't cope with the confused questions, rudeness ,anxieties (even though this is all due to the illness). All I get now is ,"have you thought it's time she went into a home?". And my answer is "Do you think she would be happier and safer in a home? Do you think she won't fall just because she's in a home? Do you think people won't still make mistakes with her medication? Do you know what the staffing levels are in care homes? (what happens to all the other 20 residents while the 2.5 care staff are dealing with someone who has soiled themselves and spread it all over their bed, walls and floor and now needs hoisting,showering, reassuring and putting back to bed?). How would you like to have your false teeth and all your clothes given to someone else who lives in the home? Would you like to be shouted at and (it still happens) slapped, pushed, shoved, just because you want the toilet in the middle of the night, you need reassuring after a bad dream, or you won;t get into the bath or change your clothes or eat your food quickly enough; would you like to live in a house that stinks of stale urine, faeces and vomit? And on top of that, have to listen to endless wartime music". (Apologies to all the good, hardworking care staff out there - but unfortunately you appear to be in the minority). And yes, I have thought about bringing her to live with me, but she still has enough capacity to say she wants to live in her own house and "do her own thing". And I want to support her to do what she wants for as long as she can. Is that asking too much??
So true, all of it.....I have also said its like wading through treacle.!!..I am truly shocked at how difficult our lives are made by the people employed to help us,the system ?...its absolutely disgraceful..!
 

Jax55

Registered User
May 29, 2014
10
Yup I'm with you on this. I've been caring for my mum for the last two years, she has vascular dementia, and the incontinence is the most difficult part for me to deal with. I think the politicians should maybe spend a few days in a care home and see exactly what the reality is.

Jacqui

Someone mentioned to me today how good it is that dementia is in the news so much these days. Yes, the word is mentioned in the news more now. But what this person doesn't and couldn't understand is that the dementia they hear about is a sanitised version that doesn't come close to reality - you don't hear a lot of incontinence stories in the news when they talk about the symptoms, for instance.

I am all for raising awareness, but they're not telling it like it is, and that's why it isn't getting the support it needs. Because people think it's a bit of memory trouble, and don't realise it is total devastation of everything the person ever knew and did - including things so basic - like going to the toilet or knowing how to open the front door - it is difficult to believe that someone could actually forget them unless you witnessed that devastation first hand.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
I thought I would come back with the latest annoying event.

My husband has been receiving Tena incontinence slips and pads. This year I received a letter telling me it would no longer be received from Tena, we would now get a new supplier starting in August. They are rubbish, the tabs on the slips are not good. Once you put them on pressing the blue tab ( that is if they stick). When you need to check, you then have to pull the white tab attached to the blue one and re-stick. Ha Ha!!!! that's as bad as the blue one. Never ever had this trouble with Tena. I could pull them on and off all the time and they would always stick back.

The pads are not as long, so I am in a dilemma, do I catch all at the front or the back. I have had some awful messes to clear up with these. I contacted the Council, they informed me, they can't do anything about it. They had received many complaints about these, but, this is a new contract from central ordering, another cut back, like stopping the collection of soiled incontinence items. How can someone in an office just order stuff, because someone in Spain can quote cheaper. Even though the quality is not as good? The district nurse called last week, when I told her, she said she was getting complaints from a lot of her customers as well.

What happened to all that election talk of taking care of the sick and elderly? I give up.:confused:
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
I sympathise Mal. Our incontinence service only provide pads that are woefully inadequate one someone reaches the stage of complete incontinence. I have heard that this is a very common problem. A District Nurse said to me that she wondered what was the point of a service that could not provide adequate aids.
 

Summerheather

Registered User
Feb 22, 2015
160
God, reading this is like the story of my life now.

When it's written down like this I don't know how any of us cope.


They also don't tell you that you will be jealous when a friend's mother gets diagnosed with cancer and has help that you would love to have. You are now that horrible person that envies someone with cancer - how low can you get.
 

Summerheather

Registered User
Feb 22, 2015
160
Thank you for this. It resonates with me completely

I would add:

The don't tell you that the only advice you will get will be yet another support agency giving you their glossy booklet on what dementia is - by now you definitely know what it is - and giving you a list of support agencies who will five you a glossy booker telling you what dementia is and giving you a list of support agencies who will give you a glossy brochure telling you what dementia is and a list of support agencies who will...

love

N
OMG, I'm so sick of this one!! I've had this one - you don't actually get any help, but they are so full of 'advice' - no actual help mind, but they have leaflets
 

chrisdee

Registered User
Nov 23, 2014
171
Yorkshire
You have hit on a rich seam of truth

Drummergirl - wow! this is the 'real truth' of the dementia situation, I have never seen it expressed so well. I am sick of those in authority and others who have had a skirmish with dementia but not been at the coal face pontificating with their plastered-on sympathy faces and empty platitudes.
Just as a non-miner cannot understand the sweat and grime of the coal - face, so those who have never done the hands-on stuff . . . come to think of it, sweat and grime are usually heavily involved. Plus emotional exhaustion and thinking you have a mental illness yourself. I'd do almost anything to get the 'real truth' out there. Bring it on!
Oh, and posh folk with live-in care, the 'family treasure' syndrome doing the heavy lifting don't count
either. Sorry.
 
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Summerheather

Registered User
Feb 22, 2015
160
They also don't tell you that there's no money except yours. This is a very expensive illness and you have to pay for everything. Nothing is free except the 'signposting'.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
God, reading this is like the story of my life now.

When it's written down like this I don't know how any of us cope.


They also don't tell you that you will be jealous when a friend's mother gets diagnosed with cancer and has help that you would love to have. You are now that horrible person that envies someone with cancer - how low can you get.
It's just frustration. I can understand your comments. It just seems so unfair.

I have been told one persons treatment for cancer is £40,000.

Person looking after a relation with Dementia:-

Money in = £80. attendance allowance. (applied for carer's allowance £30 a week, declined as I received £40 a week pension, so not entitled, if I put him into a care home it would cost them hundreds a week. This I do not understand, I am still a carer, but not entitled to anything.
Money out = carer (if needed) £15.00 + per hour. help with shower £12.95 for 45 minutes.

I bought a mobility van ( I wheel my husband into the back ). I asked DVLA if I could receive any discount or free road tax. They asked if he had mobility allowance, I said no. Can't have it then, I was told. My husband cannot walk, I use a hoist to get him into the wheelchair . How is that any different to people who have trouble walking and have free road tax, he is still immobile? I asked if he could apply for mobility allowance and was told no, they have to apply aged under 65.

Something wrong somewhere.
 
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banger696

Registered User
Sep 17, 2015
225
North East
I was going through most of what the OP posted, until the medication amisulpride arrived and things have calmed down considerably with the odd bouts of confusion even mums memory is getting better.
 

Casbow

Registered User
Sep 3, 2013
1,004
Colchester
Drummergirl

Everything you have said is so true. I feel you should publicise the
"dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx