It's not dementia killing me, it's exhaustion....

[Louise7]

Just seen this on the BBC news site, showing the impact of dementia on carers. Hopefully it will make some of those who aren't in this position understand the realities of the role more and see how broken the care system is:

https://www.bbc.co.uk/news/av/healt...-it-s-not-dementia-killing-me-it-s-exhaustion

 

[Duggies-girl]

Just seen this on the BBC news site, showing the impact of dementia on carers. Hopefully it will make some of those who aren't in this position understand the realities of the role more and see how broken the care system is:

https://www.bbc.co.uk/news/av/healt...-it-s-not-dementia-killing-me-it-s-exhaustion

Just watched it. Don't know the answer but just glad that my dad is as easy as he is. Felt very sad for those women who may well be caring for much longer than I will be. Very sad and worrying to see people in their 60's with this disease and their families having to cope alone.

Dad could pay for his care if needed and would I put him in a care home if it was free. No not at the moment because he is easy, nearly 90 years old and has terminal cancer so I will continue for as long as I can because he is happy although I do have my lines in the sand but we are not there yet.

If it was my husband and I was looking at another 10 or 15 years then no I could not cope with it.

I do feel worn out though.

 

[Sunshine2*]

Just seen this on the BBC news site, showing the impact of dementia on carers. Hopefully it will make some of those who aren't in this position understand the realities of the role more and see how broken the care system is:

https://www.bbc.co.uk/news/av/healt...-it-s-not-dementia-killing-me-it-s-exhaustion

Hi Louise7, Just watched the news on Dementia and care. It was like watching my life. I have given care to my husband for 30 years (he’s still in his fifties) for: Aplastic Anaemia, a brain haemorrhage, epilepsy, MS, mini-stroke and MS Dementia, (dementia for the last 8 yrs. approx.) He has Optic Neuritis and Nystagmus, has an indwelling catheter which I attend to, although he has occasional bowel accidents. I do all personal care and push him in a wheelchair outdoors and he uses a Zimmer frame indoors. I do everything for him 24/7, apart from four hours respite he goes to weekly which is wonderful for him, with all the activities. I have little sleep, as he has muscle spasms every eight seconds and snores very loudly. Over the last few months, he has been waking up through the night and was trying to get dressed at 4am the other day. I have to deal with his angry challenging behaviour. The heating is on continually, as he is always cold. Whilst I am grateful for the hospital care, the constant care has given me Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine, I believe. As usual, we just carry on... Lonely life.

 

[canary]

Yes I read this @Louise7 and hoped someone had added a link to it
I thought it was good that they showed the more advanced stages of dementia and some of the more challenging behaviour. I noticed at one point point one of the wives said that memory loss was just the tip of the iceberg and I mentally cheered.
At last a report not produced by the "rosy glow brigade", but an honest one, instead.
I hope a lot of people read it.

 

[Lirene]

Thank you so much for sharing this BBC Link, although absolutely heartbreaking to watch it is true daily life for a great many of us.
I would like to think that changes will come soon, but sadly after being refused fully funded NHS care for the second time for my husband who has multiple problems including advanced Parkinson’s and dementia, I think I am living in a similar parallel universe to my husband ! I have to face the truth that it’s not going to happen in neither his or my lifetime. I pray to the Lord for a cure, a change - and soon xx

 

[Wifenotcarer]

Yes I read this @Louise7 and hoped someone had added a link to it
I thought it was good that they showed the more advanced stages of dementia and some of the more challenging behaviour. I noticed at one point point one of the wives said that memory loss was just the tip of the iceberg and I mentally cheered.
At last a report not produced by the "rosy glow brigade", but an honest one, instead.
I hope a lot of people read it.

And I hope a lot of people will sign Age UK's petition to the PM.
www.ageuk.org.uk/our-impact/campaigning/care-in-crisis

 

[Grannie G]

I found it a very upsetting report and truly realistic.

 

[Mitch60]

And I hope a lot of people will sign Age UK's petition to the PM.
www.ageuk.org.uk/our-impact/campaigning/care-in-crisis

I've just signed this , it's heartbreaking seeing those women caring for their husbands ...but I saw myself caring for my mother as I am sure lots of us did , caring for our loved ones ...having to battle to speak to anyone to get some help ...or guidance.
Taking folks homes and savings to pay not only for themselves but the short fall of others ..please don't get me wrong ...happy to contribute ...but it should not be a two tier system just because your a self funder !

 

[Louise7]

At last a report not produced by the "rosy glow brigade", but an honest one, instead. I hope a lot of people read it.

So do I. The quote from Julia - 'Dementia is a thief. It steals your hopes, it steals your dreams. It steals your future and it steals your life' - is a much more powerful message to send to the politicians, the health & social care professions and the public than the 'rosy glow' view of forgetfulness. There needs to be more hard hitting messages and honest reporting in the media. People need to see and understand the realities of dementia care, the constant battling to get some basic help and support, and the impact it has on family carers.

 

[Alice nun]

There’s lots of elements of a life

What one defines it, no one part is important because our life although in our hands can be taken away with a blink of an eye.

It’s what you do with each stumbling block

That defines ones life.

At the end anyway.

To carry on no matter what.

But to have support along the way is

Perfect that support will make us as a person because although the world is beautiful it’s the people we chose to be in it that make us. allow us to be just
Us and that’s all we want is to be us,
No one planned for this we all had our different dreams. I’d like to thank the 2 ladies for taking everyone into there personal life’s it touched me because at every point I have lived it.
All of it was what I live. I sit alone every day and night of corse I no there are others because each day I read this forum
But I’m so grateful for these 2 wonderful ladies opening up there life’s to the bbc.
I hope that all of us can not only have a wonderful Christmas but some help
And understanding
Between us all because there are many living this life and all we want is some help
To carry on

 

[Dimpsy]

Brave women, throwing the ugly side of dementia into the spotlight. Good!
In fact there shouldn't be any tarting-up of dementia, it's a degenerative terminal illness with ugly and testing symptoms, time to face the truth.

 

[annielou]

Thanks for the links, just watched it and signed the ageuk petition too. What a sad watch, 'dementia is a thief', so true Julia, shame its not dementia that ends up in a prison though, its the sufferers and their carers

 

[Mustang66]

It was extremely brave of those amazing women, a true insight, well said Dimpsy! well said all
So many of us now under pension age caring 24/7, what the government do not understand is all everyone needs is support, with support it would enable us to care longer for our loved ones at home, which is what most of us want to do, everyone at time of diagnosis should have the support of someone professional who is there just to talk to if needed, the longer we can care at home means huge savings for the NHS

 

[LizzieM]

Just seen this on the BBC news site, showing the impact of dementia on carers. Hopefully it will make some of those who aren't in this position understand the realities of the role more and see how broken the care system is:

https://www.bbc.co.uk/news/av/healt...-it-s-not-dementia-killing-me-it-s-exhaustion

Just watched this and cried at the hopeless recognition of seeing that OH and me are in pretty much the same situation. I just want to curl up and die, I’m so tired. Trying to hold down some kind of semblance of a career I once had (financial and mental necessity) whilst juggling all the caring and responsibility for what is left of the person who turned out to be the love of my life is the absolute pits. I just hope it shocks people (including ‘invisibles’ who I’ve had to withdraw from any contact with after their ignorant and vicious communications) who think they know all about but actually haven’t got a clue into their own shameful recognition, I doubt it though. So very sad, it’s absolutely heartbreaking for all of us who are actually having to deal with this at the sharp end.

 

[copsham2]

posted in the wrong place

 

[copsham2]

Hi Louise7, Just watched the news on Dementia and care. It was like watching my life. I have given care to my husband for 30 years /QUOTE]

Hi sunshine
What a tall order. I don't know how you do it. It feels so not right that you are doing all of this with 4 hours respite. What devotion BUT what choice? My thoughts are with you!

 

[Bunpoots]

I wish it would make the invisibles step up but I doubt they’d believe it’s that bad for their relatives. If they bother watching I can’t see it changing their behaviour.

Let’s hope it gets through to a few of them.

 

[Gillywilly]

Louise you are so right about the care system it is broken. The reason the system is broken is because we have people who go to the doctor wanting paracetamol and other drugs that cost less to buy until we stop giving stupid things I am sure we could save a lot of money another reason we actually don’t charge people who are here on holiday so of course the system is collapsing. I think we need to urgently start charging people who do not turn up for appointments after all if you don’t go to the dentist they charge you £25. I myself am a complex care case and terminally ill I actually lifted the phone to the person responsible for funding at the hospital and I had been assessed as needed 140 hours which is 24 hour care and I had an argument with her but I got my funding it’s disgusting.

 

[ebas]

Louise you are so right about the care system it is broken. The reason the system is broken is because we have people who go to the doctor wanting paracetamol and other drugs that cost less to buy until we stop giving stupid things I am sure we could save a lot of money another reason we actually don’t charge people who are here on holiday so of course the system is collapsing. I think we need to urgently start charging people who do not turn up for appointments after all if you don’t go to the dentist they charge you £25. I myself am a complex care case and terminally ill I actually lifted the phone to the person responsible for funding at the hospital and I had been assessed as needed 140 hours which is 24 hour care and I had an argument with her but I got my funding it’s disgusting.

Just signed petition.Watched the news program last night.It made me cry.It was so true.

 

[DennyD]

So powerful!