Jag’s story: ‘Mum knows every nook and cranny of her home, I promised I wouldn’t move her’

Jag and her mum, who has dementia, live 200 miles apart. Like so many others, Jag has been exhausted trying to find appropriate care and is worried that she soon won't be able to afford the costs.

This December, the UK goes to the polls to vote for the next Government. The outcome of this General Election could have big implications for people like Jag and the the future of dementia care.

It's stories like Jag’s that demonstrate why dementia needs to be on the agenda of every political party and, most importantly, at the heart of the next Government’s plans. 

Jag’s Story

‘I coordinate my mum’s care from my home in Manchester – 200 miles from her home in Maidenhead.

‘Mum needs around the clock care, and it costs more to arrange Punjabi-speaking carers. It’s difficult to find carers too.'

‘For three months I was driving 400 miles every week to mum’s house and back. It all became too much and I ended up seriously ill, because of the stress of it all and the demands on my time.' 

Utterly Exhausting

Our dementia advisers are here for you.

Jag ended up leaving her job because coordinating her mum’s care was taking up so much time. She was constantly having to search for carers, speak to the council, and try and get different health professionals to speak to each other. 

'With no income coming in and my savings having been depleted, I am no longer in a position to top up mum’s care.'

‘I promised mum years ago that I wouldn’t move her into a care home, and I’m doing everything I can to keep that promise.'

‘She knows every nook and cranny of her home and just wouldn’t be happy anywhere else.

‘It’s been utterly exhausting, but you keep at it out of love, don’t you? I just want to make sure mum has the best life she can in the time she has.’

Demanding action on dementia – our manifesto for the General Election

Jag’s experience is much too common. People with dementia and their carers don’t get the care and support they should. That’s unacceptable and unfair. 

This Election, we need commitments to end this injustice. People with dementia should have the same support as people with other diseases.

We’ve published a manifesto, Demanding Action on Dementia, that outlines commitments all parties should make during this election period. All the recommendations should be delivered by a National Strategy under the name of the Prime Minister. 

As a nation, we can be a global leader in creating a dementia-friendly society – by demanding better care and support, by changing social attitudes and by investing more in dementia research. 

Together, we can fix dementia care.

Demand action on Dementia

Find out more about our manifesto and how you can help us make dementia a key issue during this election.

Demand action


Add your own

Sorry to hear your story but Local Authority Care is a last resort in my opinion. Far better to apply for Continuing Health Care paid for by our NHS , & its not means tested at all. The test is on medical needs for adequate care, & NHS provide a Personal Budget covering all the costs including respite care for family members. It sound perfect but the catch is the Assessment procedure. A Primary Care need like Alzheimer's Disease should qualify provided there are associated complexities. Alzheimer's when advanced has all the qualifications as any full time carer can confirm.
I was a full time carer until my Wife Pauline died in 2016. We managed to get NHS funding at an Appeal hearing, & the benefits were backdated to the original Application date. We had no experience how to deal with NHS & had no time to learn. However when I was newly bereaved I launched a website to help people to obtain adequate care from NHS enabling professional carers to be employed under my supervision.
Full details are online at https://continuinghealthcare.wordpress.com/
Please advertise this valuable service , & persuade all our politicians to get NHS to adequately fund this type of care in our country.
Best wishes. Peter Garside

Thanks for sharing your experience Peter - we hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
For anyone looking for more information, our page ‘Tips on preparing your case for NHS continuing healthcare’ should prove useful (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) - we also have a free downloadable booklet with further information (https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/whe…).
Alzheimer's Society blog team

Thank you for all this information Peter. Both mum and dad have Dimentia. Dad was in a carehome which he didn’t like but passed away in September and mum is still at home.
Mums not eligible for NHS CHC as she can still do many thinks even though she has no short term memory.
Mum would like to go into assisted living however The council have advised this could take up to 12 months.
Mum will have to sell her home for the care payments.
I think Dimentia should be recognised as any other terminal illness by the NHS.

Many thanks for highlighting this. My late Mum was adamant she would not leave her home. We also lived 200 miles apart, and her Alzheimer's was a big problem. But because she was never considered suitable for CHC we managed with weekly journeys to support her, down early Saturday and back Sunday evening , 200 miles each way. She couldn't afford private care other than a kindly neighbour, who was invaluable. Assessment for CHC is vital, and recognition of the overall needs of people with dementia fully considered.

Hi Peter. I too went down the route of applying for CHC for my mother who had late stage Alzheimers. They took ages to respond, nearly 2 months and by the time they did, my mother had just passed away. They didn't award her with it, but, had she lived I would have appealed. Unfortunately I did heard that if they do award CHC funds, it's usually rather late for some so was realistic but I too agree it is time the NHS took Alzheimers as a seriously progressive disease as it affects not only memory but strips the person of the ability to do anything for the self and to communicate, among other distressing behaviors. It is hideous to witness and distressing to see your loved one in anguish knowing they aren't the person they were.

This is definitely a major crisis that all the political party’s should have high on their agenda.
I lost my father to Alzheimer’s in 2016 and now my father in law has it too. My Dad was in care for four years after we could no longer manage him at home and even though he could not even communicate or do anything for himself, he also had bowel cancer in the end did not meet the CHC criteria for funding ?
As I said we are now going through this again with my father in law and funding £ 6000 per month is devastating the whole family. He also has aggressive issues but still turned down for CHC.
Alzheimer’s should definitely be treated under the same umbrella as Cancer and any other terminal illness. Fighting for funding is the last thing families want when living and caring for a loved one who is so poorly and at times so challenging. It is the saddest thing to see.

My husband has dementia he can still do things, but, he used to work on cars and now can’t remember how to put them back together. He drinks alcohol and I have to monitor his drinks because he drinks them like a glass of water, I know he doesn’t know that he is doing it because he will say ,I just had one drink after he has had 5 or 6 in 15 mins. What else can I do for him?

I understand the difficulties of long distance caring for a parent....I live 4,000 miles away in another country but travels back and forth 6-7 times a year to look after my Father. My income has dropped dramatically though I am still able to do some remotely when I am with Dad. He has a 24/7 Carer when I am not there. I sat for 4-6 weeks each visit and when I am there I am his Carer - this helps to reduce his Care fees but still funds are running out.

Yes Dementia should Be recognized as any terminal illness. There are so many people I know that don't get the care they need, only thing I can do is pray for all of them.

My mother is 97 and has mixed dementia
She has been n a care now for approx 5 years
She has no mobility and only sleeps in her chair as she will not lie on her bed
She suffered a brain heamatoma 2 years ago following a fall and has a range of medical conditions for which she takes medication
Unfortunately she does not qualify for CHC and has used up most of her money from the sale of her 2 bedroom ex council house
Since December 2018 there is a contribution from the local
Authority but I have to pay a top upevery month to ensure mum isn’t moved to a cheaper place
I sm retired and suffer ill health
A living nightmare !

I know it is difficult but no one should make promises to their loved one when they have no idea what is going to happen. Everyone that is unfortunate to get Dementia is going to be different in their deterioration and capabilities. My husband was suffering from vascular dementia and I looked after him at home for 9 years. But in the end when he became doublely incontinent and would not let me change and clean him there was no choice. Someone coming in once a day would not work as he was not predictable in his toileting. He would not sit on the toilet either so there was nothing i could do. He was having seizures and therefore the dementia unit suggested i let him go into a nursing home. It took three carers to help him for a long while and then he changed and became more calm and only needed two carers. He died in May this year. It was sudden and a terrible shock. Carers need more help. I will never get over seeing my husband in that home. Like a lost child. But one carer 24 hours a day cannot cope.

My mother who died in 2017, after having Alzheimer`s disease for more than 13 years, was assessed for CHC several times and was refused because she was not complicated enough. This was when she was chair or bed bound, unable to speak or understand, spoonfed thickened food and fluids therefore at constant risk of choking and doubly incontinent. It is a box ticking exercise and as such can be subjective. I worked in a care home and it was not always clear why some people received CHC and some did not. I feel that in the latter stages of this disease people should be under the umbrella of the NHS, social care in their case is I feel a misnomer.
There are many stages of the illness but education is needed at each one, often it is the professionals who don`t seem to have a clue and sometimes a passer by who is the kindest of all but in the last stages it is only the law that will help us all to be looked after when we need it the most. It is how we look after the most vulnerable in our society that defines what type of society we are.

We are so lucky as we have brilliant back up from live well at home officer the GP and hospital specialist Also student researcher visits every two weeks if needed.Our wish is for living well at home as long as possible.It is hard to ask for help but I researched the best I could to get as much information We live in the Bath and North East district.I am able to phone and get help for my partner as I was struggling on my previously. My wish is for everyone to get the help they need .Sandra

Thanks for the huge interest in my website since this blog went live. You need to prepare in advance of a NHS Assessment, & be prepared to get professional advice. I can recommend the person on my Links Page from personal experience. We would not have won our CHC without her expertise.
The Conservative Manifesto pledges that if they win the General Election people will not have to sell their Homes to pay for care needs. This is very good news, but much more resources are needed as we all know. Now is the time to campaign for changes.
Best wishes. Peter Garside

Who pays for care when all their money is spent on fees? What happens if the family has no funds to pay or simply refuse to pay For ongoing residential care? Or no family whatsoever?
I’ve a parent with Alzheimer’s and I worry how we are going to be able to get the future care she will need.

My mum has vascular dementia and now resides in a care home . We are lucky that my stepdad is there too. He felt he couldn’t cope without mum and a very kind relative of his, is funding his care for now. Unsure how long this may last. We have been unable to sell their house as yet but aim to try again in the new year. They are both very happy and the home is very near to us. It is a lovely small home and caters for their needs very well. They have more than regular visits from our family who love them both very much. In an ideal world if the financial support could have been given to our family rather than the care home option the scenario could have been very different and the monies could have been used to provide extra care / building works etc to accommodate them with family members. As a family we are adapting including Mum and stepdad and feel blessed at the moment. We don’t know what the future will be like but hope they can be together . Certainly I will do my very best in keeping them together. I fill fortunate that this only option that was given to them and our family is working for now. They have been in the home since May/June this year 2019. We are about to embark on deferred payment s for Mum so will see what that brings . My stepfather is quite frail so we will be looking into assessing his health and social needs in the new year . Am hoping that he flags up with enough to suggest residential care as an option for him even though once house sold both become eligible to fund care on a private basis. This we calculate will only last about two years based on care home costs. If all this money could be put back with the family and more flexible working available and added to this parent care benefit ....as we do in society for child care then just a maybe we might have been able to have mum and step dad under our roofs.

Boris Johnston has said he will see nobody will have to sell their home to pay for care. Is this a certainty?

I think that the sale (or not) of the family home is a side issue and typical of a government pledge that does not begin to address many of the real problems. My mum has dementia, my stepdad is 86 and he has a right to remain in the family home. This however does not help him to take care of his wife 24/7 when the social care system is an absolute lottery and the complexity and tragedy of this disease continues to be ignored. I firmly believe this is because the burden of care is falling to those least able to protest due to age and often their own ill health. There needs to be a national care service ( like the nhs) which affords old people some dignity and dementia should be recognised for what it is, a terminal health condition from which there is no recovery. On behalf of both parents I will be fighting for the best for both of them with the help of campaigns such as this.

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