Real stories

As a nurse and social worker I learned the care system inside out. Now I'm calling for urgent change

I know all about care for love ones as I was trained to look after my wife which helped a great deal and we have eight long years of this terrible disease In an effort to get funds with my lovely mate missatacey Thornhill we produced an album to sell for research funds please pay and download our album. Maurice and Stacey what a wonderful world. The song we wrote called confusion is the mind of my lovely who is nearly no more as she is leaving me good bye my lovely xx

These stories are so representitive of hundreds of people being abandoned by the so called 'care' sytems. After an illness my 90 year old mum, who had mild dementia had to go into a residential home for respite care. After getting Covid, then having a fall my mum declined rapidly becoming bedbound, unable to eat solid foods, Dysphagia took hold and her care became beyond the carers ability through lack of training, education and resources. Elder speak was normal, and my mum was left without attention, food and water for hours as they had the attitude, she was old and on her path to death. She deserved more. Myself, my sister and brother visited everyday to wash her, feed and give her drinks. She lost all dignity and this care cost her £15k on top of the 2 years £60k previously spent on private carers at home. A whole life savings. I work in charity hospice care and I'm planning to set up a charity providing volunteers to give free training to care workers in care homes on looking after people with dementia. My heart breaks for people without family to look out for them.

How I agree about the mountain of bewildering paperwork handed to you on diagnosis. There is an excellent small leaflet of what you need to know. I have just received a large reduction and rebate from the Council as my husband has Alzheimer’s. Make sure you all know about that!

It is not a holistic approach to care not a joined up service cost before safe quality care Elderly carers caring unsupported for friends and relatives physically and mentally unsustainable what kind of country do we live in most of the support is provided by charities thank goodness for them

When my husband was diagnosed with Alzheimer's in February 2017, the consultant put him on Donezepil and the nurse in attendance gave me a book produced by the Alzheimer's Socitey full of information and useful addresses, and that was more or less the end of the personal contact. There was no advice or information about local support groups or how to access support of any sort in my area, or what I should do next. I floundered along for a couple of years until I started attending a Carer's Cafe that I happened upon by lucky accident, and from here I discovered the Admiral Nurse service, and was referred by my GP to the nearest one based at our local hospice (which I had always thought was just for cancer care). What a difference this referral made to our lives, as Admiral Nurses are specialist dementia care nurses who can visit you at home or phone you on a regular basis, and provide all the signposts that you need in a way tailored to your situation, and also provide emotional support. Everybody living with dementia needs this kind of personal service. Until then I was adrift and feeling lost and hopeless about my ability to be able to cope with my husband's worsening dementia. My husband has now died and my Admiral Nurse supported me to the end, for which I am extrememly grateful. I now do all I can to raise funds for the training of more of these nurses, as there are less than 400 of them to cover the whole country, but really the service that they give should be available from an umbrella scheme funded by the government and should be available to every family that has a diagnosis of dementia to deal with.

I entirely agree with many of the contents I've read in the article and replies. The dementia support situation is woefully inadequate. I have been totally lost in this frightening abyss. My wife has gone from early onset Altsheimers, which she herself declared in 2013 and read formerly diagnosed in 2018. She is now 66 and has moved to an advanced stage. She stopped work in 2014. Diagnosed with stress. I had to retire early to support her a year later. I'm now full time carer. She needs help with everything. She understands very little and needs coaching to eat and drink. I recieved initial support and advice from a local support group. How to apply for PIP, Council Tax reduction. I later learned that I could get carers allowance. Not back dated and it was immediately stopped on the day I got my state pension. In the meantime I got myrtle or no support until I met the local Admiral nurse. She was there for both of us. By now I was at my wits end and struggling to cope. She put me in touch with some daycare organisations. This has been life changing for us both. We pay £48.50 for 5 hours twice a week. This gives her access to a social group environment. It's given me time meet friends and to get some simple household chores done. It's simply wrong that we should pay for this service and to add insult to injury, is that we can't even claim these costs against income tax. This needs to be addressed immediately. Moreover, regardless of age carer's allowance should be available to all full time carers. I still feel very exposed. This is when you find out who your real friends are. Many have drifted away like leaves in the breeze. I strongly recommend that you find your local Admiral Nurse. Lastly, the only contact I get from The Altsheimers Association are the endless requests for donations. Where does all this money go? It hasn't helped us. I have made a note of the contract information above. When I get the opportunity I'll call them.

Don't get me started about Adult Social Care in this Country. My father died ten years ago from vascular dementia, thankfully his final decline was only the last 6 months of his life. However, this is not the case of my 96 year old mother who is in the later stages of vascular dementia and is still at home. I have had an amazing team of carers who have been with her for around 5 years. As ever finances prevent us from keeping this situation so we have moved to a live-in carer alongside a night carer. The nights are particularly bad and getting worse. We are on week two of a Lithuanian Carer and it is certainly having its teething problems. Not least because there are big shoes to fill. We have exhausted all of my parents savings and more, next is equity release from the property.
We have spent in excess of £150,000. My father felt passionately about the state of Dementia Care in this country and I am desperately trying to do my best to keep her at home for as long as possible. I have contacted my mother's MP, who has an American Parliamentary Assistant who decided to give me the benefit of her advice as it is in the US and that the MP agrees with having to sell property to fund care! So no help there. Needless to say the call didn't end well. It is a national disgrace and Boris Johnson needs to address it NOW, after all he was happy to do a photocall with the late great Dame Barbara Windsor and promise reform.

Please can somebody help me with where to start? My mum was finally diagnosed in April 2019 after at least 18 months of me telling the GP something wasn't right. Since then, 2 1/2 years on I have had no help whatsoever. Mum is now declining rapidly, and is becoming too much for me to manage on my own with a full time job I am not willing to give up. How do I go about an initial assessment?

I have read all these comments with such a heavy heart. I have worked as a community carer and a residential carer for the last 3- 4 years. As one lady said some carers are employed right off the street with no experience and a bad attitude. I was shocked at the minimal time allotted to each client before the next one. I went to one lady who had severe Alzheimer's Disease and at that time had received no dementia training. I just didn't understand what was going on and she couldn't tell me as she had lost her speech and also (at that time) I did not understand the thing with mirrors. It was to me - absolutely mind blowing. I was also incredulous that this was a minimum wage job! I have worked in a variety of fields before and received much better pay and benefits. At the moment I am taking a break from the care industry and working in retail - the pay and benefits are better than working in care and this is why some care homes are going to close. These care homes often want you to work very long shifts with minimum support and poor wages. It is also a massive responsibility! When will the government wake up!

Hello Julie, I read your story with a degree of sadness, please accept my heartfelt sympathy. I really do feel for you because with your background and experience, you already know where your future will take you and in a way that is tougher for you than for others without your knowledge.

I am 86 and for some years cared for my smiley Lady Betty 83, Betty was diagnosed in 2004 with Alzheimer's, but with her medication, we kept going until my Heart attack in Sept 2019. I had been giving Betty full care at home for 4 or 5 years and managing fine.

Long story short, she was later passed into the care home system which broke my heart. I went to see her every single day for about 4 hours to do some caring and be with her. I think some of the carers took me for a resident. However, it did give me an insight into care home activities.

Where am I going? Having read Jacqui's report above, I would agree; a) with you that dementia is just grouped in with the elderly as elderly, and b) with Jacqui that dementia care is deplorable.

I never had home support to help me, we managed OK, so my comments refer to some care home staff with heatless cruel attitudes who treat the elderly like naughty children. Some of these carers are employed straight off the street with bad attitudes, no nursing or caring experience or even acceptable attitudes. I worried a lot leaving her in that environment, but I wasn't allowed to take her out. Now at least half the carers were good natured lovely happy ladies who treated the residents with kindness and respect. The worry was not knowing what the night staff were like.

Oh dear, I could write a book, but this is not the place to rabbit on with my story. I do have a large amount of correspondence, letters and emails, between myself and higher places, but what I wanted to say was, in the early days with Betty, I made some enquiries 'What do I do" and I received shed loads of printed advice which overwhelmed me. It came from many different places (don't ask) containing similar information which overlapped each other, and far too much for me to read. If there had been just one booklet containing the important stuff, summarized and properly filed, that would be useful.

I'll cut out now Julie and get something off to my MP. Oh, but Betty is still in the care home and now doesn't know who anybody is, or who even who she is or where she is. of course the lockdown means I haven't seen her for, what, 20 months although son David goes occasionally.
You too are in my thoughts now Julie.

Totally agree, i am one of those people who doesn't know who to ask regarding care! My husband isnt too bad yet but that day wont be that far away, and it worries me to death!!

A wife of a friend has recently been diagnosed and is very pleased with the care being provided through our local GP practice.

Dementia care in care homes also needs addressing. There has to be much more robust training of staff who need to understand fully what people living with dementia go through. My 91 year old mother has basically been ‘evicted’ from her current Bupa care home after only 8 weeks due to her apparent ‘ violent’ behaviour, which is managed perfectly well by some members of staff but not others! The whole situation has been handled appallingly by the care home. I am in total despair.

I have a daughter who was diagnosed with early onset Alzheimers aged 49.As a family we applied for Continuous Health Care for assistance which she eventually received .My daughter has never married and being single and living alone it fell to myself and her 2 sisters to undertake her care until CHC was given when she became violent and had to be placed into a care home.Recently reviewed this payment is to be stopped but my understanding is that Alzheimers is a disease and her care cover should be continued .My daughter will be 56 next week.Her 2 sisters are both working and without their assistance I would not have been able to cope as long as we did.Her younger sister is an insulin dependant diabetic and registered partially sighted and no longer driving. Born in1939 I have 2 new knees and spinal stenosis so we are grateful for all the help we can get.Our family would very much like to see a clearer and fairer picture of the help available.,as it is our understanding that we would be breaking the law if social services were to give my daughter any funding.

Until the funding is in one place then the system will remain broken. Care is funded by so many different departments local authorities primary care and nhs all trying their best not to pick the bill up so families are left with poor care or none!
Care at home can be very poor (speaking from experience) having had local authority carers that were always in a rush, we had cameras fitted and the footage is alarming even with the carers aware they were being filmed. When they wanted to not be seen/filmed they would intentionally block the view of the camera, the sound was still on as they could block that.

The support for dementia care is deplorable in England and needs to change.

Almost forgot unles you know how the system currently works most families have no idea where or what they are entitled to or how to access it, plus what choices are available. This services needs to be more transparent and easier to access.