Real stories

‘The care system hasn't helped us, it has made things more distressing’ - Nimisha's story

My family members have suffered from dementia. There is zero help even in the biggest city with most well known doctors. Family member goes into hospital for aberrant behavior and they are released in an hour. They don’t even call the person’s emergency contact. How could hospitals let someone with dementia walk right out the door especially late at night when the ground is covered with snow and ice?

This crisis needs sorting NOW please email me we need to do something NOW

My dad was diagnosed with Alzheimer's in June 2017. We as a family but especially my sister have had to fight for every bit of support. Social worker is useless. He sent a personal care company who did not have any experience of dealing with dementia. The memory clinic who diagnosed my dad have been very very poor at providing support and as for the GP dont get me started. She seems to have the attitude that as my dad has dementia he's not worth bothering with. There is all the publicity about dementia services but in fact it's just hype. We are trying everything we can to help my dad and my mum but in the area where my parents live the 'professionals' just don't cut it.

Does anyone on her know anything about 117 funding?

It is very unfortunate that the issues and problems suffered by Nimisha and her family are all too common. In the two and half years since my wife's diagnosis as early onset, I have fought a continuing war with the very bodies that purport to be there to help. The occasional battle has been won, or at least resulted in a honourable draw. Most of these have been with the NHS - an oxymoron if there ever was. The system of referrals to 'specialists' needs so much to be desired. There is such a diversity in efficiency, and more importantly in empathy. To be fair to this monolithic organisation, I have found that the frontline staff are generally excellent, but there would appear to be a direct correlation in that the more senior the staff the more problems encountered. I could write a book about CGC's and CHC, and it would not be a drama or even a thriller. It would be filed under tragedy. It has always been a perception that health care is a right. CHC is the opposite, and certainly from my experience everything is done to discover ways of saying no. I gave up my employment in my fifties to full-time care for my wife, something she must have 24/7. However from my experience in this ordeal, and that is what it is, the younger, fitter and more affluent the carer the less chance of help.

As carers we all seem to be in the same boat.Left in Limbo after your loved one has been diagnosed with this dreadful disease.Worrying about costs and the thought of selling a house to fund the care costs.
No one should be subjected to the anxiety this causes which along with the work involved results in carers themselves becoming ill.
There is a lack of communication between various departments of the NHS when someone is diagnosed with dementia because carers should be advised from the very beginning about the benefits you are entitled to and not left to find out for yourselves.
The specialist should put in place a home training program for carers and advise you of benefits you can receive like attendance allowance,council tax discounts on rates and VAT exemption on various things because looking after someone with this disease is heartbreaking and very very stressful
without the worry of negotiating the path for benefits,the costs of respite,help and selling of homes etc.
The criteria to qualify for Continuing Health Care is in my opinion set so you fail at the first test as happened in my case.
I am 76yrs old and I care for my lovely wife who after five tests over a number of years was diagnosed 4yrs ago.Why it took so long I will never know.
As the disease progressed she has lost her vocabulary and mobility and besides having to look after the house and other things I now have to wash,dress,feed her and look after all toiletry needs.No help unless I pay for so called professional carers to come in for half an hour each morning and evening.
The costs were very expensive with one company quoting £275 per week.
I find social services to be of no benefit and they have closed the case as they are not giving a service to my wife.
The government have done nothing to alleviate the problems we all face and although I do believe helping poor countries with aid it is my opinion nearly 14 billion pounds each year is excessive especially when they don't know exactly where the money will end up.
A figure of 10 billion pounds to the EU every year,for what.
My family asked which home they would like me to be placed if it came to it and I said put me in the House of Lords which is the best care home in the country.
God Bless You All.

Firstly my mum was diagnosed and dad and I cared for her. Then 5 years later my father was diagnosed. I’m an only child to older parents with no family. I had very a good job in the city but ended up giving up everything to assist and looking after them the best I could with some help from social services. It all but killed me. Eventually, it all got to much as both my parents spiralled downward both mentally, physically and emotionally. The decision was made to put them both in to care. This resulted in them being placed in separate homes miles apart. It was heart breaking. My father passed away 4 years after he was diagnosed and mum ‘bless her’ is in a home and has actually bounced back. She is being well looked after but at a huge financial and emotional cost. ‘Me’ I’ll never be the same and my emotional scars will stay with me forever. It angers me that other terminal illnesses the patients get everything for free and gives support but those that fall into a ‘mental illness’ as it’s been referred to get nothing.

I am caring for my wife who has Alzheimer's and was Diagnosed 4 years ago. We have no family so I don't have any help as regards to caring for her. I had a visit from Social Services last November since then nothing. The lady that came to see us was very nice and made a lot of notes but when the visit was nearing the end of the consultation she got round to the money situation and she advised that I would get no help and that I would have finance her care. She advised that she would organise a financial assessment, since then nothing. I am having to pay for private care just to be able to get out and do the shopping but I don't really get any time to myself. The care system in this country is a disgrace and the so called green paper on care has once again been kicked into the long grass by this none caring government. The social services in this country needs a good shake up and much more money needs putting into the care system and give Alzheimer's care a level playing field but I won't hold my breath about that.

I agree with other carers, like most of us I just try and get through each day . When you ask for help they make me feel like I'm begging. Both myself and hubby have worked all our lives,he started dementia signs at 57 . I had to give up work to take care of him.When I was I'll I asked for some help just of a night to get him into bed .6 weeks on and numerous phone calls still waiting for assessment!! Yet they have the nerve to say support is out there. But you try getting it!!!

I agree with everyone. My mother has Alzheimer’s/Vascular Dementia, Social Services have been useless and I am still struggling. I made a formal complaint, told 25 days for reply, then told 40 days for a reply, no one replied. I haven’t heard from the useless social worker since beginning of April.

I agree totally with all comments made on site , dementia patients /family , young and old can only get help support and empathy between the hrs 9-5 Monday to Friday . And then to be told this is not a drop in centre at our local adult mental heath centre when I refused to leave until I seen some one for help for my 84yr old mother who has Alzheimer’s who was completely uncontrollable following my father being admitted to hospital following a stroke . Unbelievable.

The social care system in this country is a disgrace quite frankly. My families experience so far of social services and our local council is awful, they don't know have a clue and palm you off with incorrect information and inexperienced providers to boot and don't hesitate to take your money and it's only when you realise yourself something's not right and start asking questions and threatening to complain followed by the responses you get back do you then realise the current system is a shambles because your just left high and dry. Local gps aren't much better either there is a clear impression that if you have dementia it doesn't matter if you could have anything else wrong as well because their not interested in treating someone with dementia for other conditions!!

We are in the same position. My Dad aged 92 has been looked after by my mother aged 88 until earlier this month when she was diagnosed with a UTI.
We had to put Dad into emergency care while Mum has been recovering.
If we allow Dad to come back home it is killing Mum looking after him.
They have a large old terraced house which Mum didn’t want to leave in case it upset Dad with his Dementia.
It is 7 years since he was diagnosed and for the past 3 years has become increasingly difficult. My Mums whole life has been spent caring for Dad.
Lately he didn’t even want to go out and spent most of his time sleeping in his chair.
My Dad is the old school and my Mum has always done everything for him. He won’t allow any of us do anything for him as Mum has always been there.
He can’t understand why he’s been put in this awful place and it must be very difficult for the staff to manage him as he refuses all offers of help, food, care etc.
As the house is theirs we are going to have to sell it to pay for his and Mums future care.
Trying to find suitable accommodation for them has been a complete nightmare. Social Services are not interested as they will be private payers!
My Mum has saved up some money for my Dad to be taken care of but we need to fund for both of them now.
This will mean selling their house which they worked so hard all their lives to pay for.
As someone else has commented - if he had cancer it would be a different story.
When is the government going to wake up to the plight of all these people with Dementia?
It is known as the long goodbye but Dad hasn’t been himself for the past 3 years.
The loving Dad we all know is still in there somewhere but it is getting more and more difficult to see.

It's horrendous, but your story, and so many others ring so true. My wife died from early onset Alzheimer's back in 2012, and frankly little, if anything, has changed in that time. So many words are spoken by our politicians but they just end up being no more than platitudes. All I can say is be strong and just do as much as you can for your father. Sorry I can't be more positive at such a tough time and don't think I'm being heartless, but nothing lasts forever. Take care and for what it's worth, solidarity.

I completely understand and empathise with your story.. until you have a loved one with Dementia you have no idea how little support is out there. It’s a total shock, disbelief! Dementia websites are everywhere but when it comes down to it there is not the help that is required for families and sufferers.. Your on your own to try and work things out and its tough, very tough.. I dread to think what happens to people with no family to fight for them.