Dementia Support Line
Real stories
Juggling work, home-schooling, and full-time dementia care with an unfair system
During coronavirus, Sara and her family had been caring for her dad, Brian, who has frontotemporal dementia (FTD), in addition to working and home-schooling. They have lived through the flawed care system and are now calling on Government to act.
At the beginning of 2020, my dad, Brian lived relatively independently with support. Every day, he would be collected by the local bus service to make his way to the day centre.
Dad relied on structure and routine; a love for getting outdoors and an ice cream at the park. However, as day centres closed their doors due to coronavirus, this lifeline was taken away, with no sign of further care for him or support for me and my family.
Family carers are exhausted, over 40% are caring over 100 hours per week
In April 2020, we were left with the challenging but only decision possible, for myself, my husband and my eleven-year-old daughter, Aimee - to move in with Dad.
Managing caring responsibilities with other commitments
Juggling work, home-schooling, and full-time care, we did our absolute best, but the pressure mounted.
On good days, break-times for Aimee were cuddling up to her Grandad and reading to him. For me, it was witnessing the fun they have in each other’s company.
But on bad days, Dad was up and down the stairs, pacing around the house, back across the room and unable to leave my side, familiarity and routine were key to him.
There was simply no support available to support Dad living with us. The answers we got were he should have remained on his own. The feelings of confusion, anger and isolation he felt, I felt them too.
Due to his frontotemporal dementia (FTD), Dad lost his ability to communicate, and when his discomfort grew, understanding his needs became trickier and trickier.
With a massive neurological decline and a lack of support and guidance from the care system, it soon became too much.
Shortly after entering respite care, Dad had a number of falls.
At 6’2 he is a gentle giant, and a very tactile man. However, without the correct care and attention, he can tumble very far. Within 36 hours, Dad had three falls.
Negligence in the system resulted in a battle to visit him in hospital and then more change for him to place him in a different care home.
Battling with an unfair care system
Whilst after some time both Dad and my family have felt more settled, now the challenge we face is distance, a lack of connection, and the deterioration that the lack of Government support has caused to Dad’s condition.
My daughter, Aimee, would love to bake for my dad and the other residents at the care home or read with him as she did before.
But with the care system unable to meet our needs, Aimee has taken on a role far greater than a granddaughter.
Since Dad’s diagnosis I have seen care in every form. The care my daughter gives to my dad, the care Cathy, a Dementia Support Worker at Alzheimer’s Society, has given me, but also the care provided by a system that has been stretched to its limit.
Now, I’m calling for better care from the Government. Because while dementia isn’t curable yet, the care system is.
Right now, our flawed social care system means that nearly a million UK families are struggling to care for their loved ones with the dignity and support they deserve.
Decades of under-funding have led to a system that’s difficult to access, costly, inadequate and unfair.
It doesn’t have to be this way.
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This article was originally published on 1 March 2021 and most recently updated on 21 July 2021.
Patricia Doney.
saysReading these stories makes me feel very sad.I to was diagnosed with early onset dementia at the age of 63 years old.I still to this day 8 months on can’t get my head around it.Although I know what I am in for as I done 2 years nursing training years ago and I saw a lot then and I know kind of what I am in for.I would like to here from some people around my age and others to hear there stories.I was told that if I am not in the NDIS by age if 65 there’s not a lot of help out there.Trish
Anonymous
saysHi Patricia,
We're really sorry to hear about your diagnosis.
Please know that support is available and we're here for you. You may find it helpful to talk to one of our Dementia Advisers for information, advice and support. You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line here: https://www.alzheimers.org.uk/dementia-connect-support-line
For stories featuring people with young-onset dementia, you may want to have a look at our magazine Dementia together, which you can also subscribe to for free. you can see the latest magazine articles and subscribe for a print or email version here:
https://www.alzheimers.org.uk/get-support/publications-and-factsheets/d…
Our blog is another place where we regularly publish stories from a range of people affected by dementia in different ways. If you want to receive emails twice a month featuring some of these stories, there's a newsletter sign-up box at the bottom of this page.
Another useful place to connect with people affected by dementia is our online community, Talking Point. You're free to browse the forum and read others' experiences, or you can create an account and connect with other people: https://forum.alzheimers.org.uk/
I hope this is helpful, Patricia. Please do call the support line if you'd like support with the above or anything else.
Alzheimer's Society blog team
Gus
saysWow, it sounds like there are a lot of people who can relate to the challenging difficulties in accessing care and support in this last year. My Mum also has FTD, which developed massively in the last 12 months. She is now in full-time care since having a fall at home (on her first night home from respite care). It's such a shame that action seems more possible once a crisis has come about. It would be so nice if the health and social care systems felt more joined up. My experience was that there are a lot of helpful & knowledgeable people out there, but finding them & being able to access services has been really tricky.
Good luck everyone!
Isobel
saysThank you Sara for sharing your story and working so hard to look after your Dad. It sheds a light on the thousands of families who are facing the same heartbreaking struggle in impossible circumstances.
Peter Garside
saysWell done Sara for your care & bringing the broken state of health care in our country. Alzheimer's is classed as a "Primary Health Need " by NHS who have a scheme to enable the public to look after their loved ones in their homes if possible. If not possible then they will cover the cost of Nursing Home fees. All of this finance is tax free. It does not involve Local Authorities & Social Care which is means tested so people with medical health problems have to pay for their care! This system is called Continuing Healthcare (CHC).
NHS have a very difficult Assessment procedure to claim CHC & much depends on the complexity of overall care needs 24/7 every day. However if people win their Assessment the service received is excellent. You will get finance to employ professional carers & extra funds to look after your own respite care , so you can keep going long term.
It is vital you know how to prepare for an Assessment . NHS use a scoring system which can introduce an element of personal opinion which can make the result a success or failure.
To help people get prepared , after my Wife Pauline died in 2016 , I launched a website which is widely used by charities in England. Full details are at https://continuinghealthcare.wordpress.com/
Good luck to everyone who needs to help their loved ones & is prepared to fight for their rights from NHS.
Peter Garside
Anonymous
saysThanks for sharing this, 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…)
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Alzheimer's Society blog team
Sara
saysThank you Peter; we have tried the CHC route once and dad wasn’t eligible but I am in the process of getting this reviewed given a further decline in the last month but nothing is ever straightforward or accessible unless you know what you are doing and most of us unfortunately don’t and it is just a constant battle
Peter Garside
saysHello Sarah. Thank you for your comment & wish you the best of luck with your application. You will see from my website that this is not as easy as it should be. However if you are well prepared as I advise then the result may be success. Professional advice will be an advantage. If you write to me personally on the website link I can advise on some companies. The Society will not assist in this regard.
Best wishes. Peter
Joanne Dawn Lockton-Brown
saysSara I totally understand your struggle. The pandemic has had such a detrimental affect on families caring for someone with Alzheimers. The isolation as carer for my mum living with my dad with alzheimers caused a decline in her mental & physical health. She has recently very sadly passed away & my brother & I had to make the very difficult decision to move dad to a care home as he couldn't cope without mum. We feel we have lost both parents at once. Although we can visit him, it's not the same & he can't see the rest of his family. The cost for care is so great too that any savings he had is all goung on care. Government need to support the carer more & provide more support for social care that's why I have signed your campaign.
Hope you too get to spend quality time with your dad.
G
saysVery sad. The major problem with care homes/domiciliary care is that they are privately owned and run for profit - a very lucrative business. Only have to look up the millions of pounds lump sums, bonuses, salaries paid each year to the bosses of these private care businesses. More government funding will only go to lining their pockets and not to where it should be going in providing proper care for our elderly and vulnerable. More cost effective for government to renationalise care. We need to bring care back into government ownership and government run - a National Care Service on par with NHS.
ROSE M COOIL
saysI feel for anyone coping with a family member with dementia My husband of 52 years has alzheimers , copd prostate cancer hes deaf and going blind with cataracts which cannot be operatd on because with his alzheimers he cannot understand what he would have to do.The past 16 months have been particulaly hard as I am his sole carer. He is 82 and I am 74, my son lives in North Yorkshire and daughter is a key worker and though she lives nearby she is a singl mum with 2 children. They have kept in touch by phone and daughter calls to check physically every few days she hasnt come in house because of his vulnerability. I have severe arthritus so it has been very bad being the only person to look after him. I have to do everything for him so yes we do need support not empty words.
Matthew
saysthis is sad
HAMIDA ISLAM
saysWell done to you both for staying strong and having the strength to take full time care on. I completely understand how tough it is. My dad has alzheimer's dementia, early onset which has been so hard! It has been so fast progressing. So hard to watch with some one who's still in his 50's.
I too now care for him full time with my mum and work full-time. Not easy at all. Services do need to improve to provide support to families and we definitely need more trained staff who understand the needs for someone suffering with this disease.
Sharon Kennard
saysI’m one of Sara’s closest friends and I’ve seen how this has taken its toll on the whole family, but mainly Sara and Aimee having to deal with everything on a day to day basis.
I take my hat off to Sara, she has dealt with everything face on that’s she has been faced with, trying to get on with her job and not mention being a mum, which isn’t easy at the best of times.
I think she has done an amazing job with Brian and having to make the toughest decisions that she will ever have to make for the best way possible for her dad.
I’m super proud of her and Aimee, they have done Brian proud.
Maureen Erdwin
saysI very much feel for you as am in a similar position, as my husband who already has diabetes and was referred to hospital by our GP, contracted COV-19 after being in hospital ward for 10 days
and was there until a few weeks before Christmas after fighting for his life and has left his lungs
badly affected and with great loss of memory, and unable to care for himself.
At the present time he is in a care home, but I have been trying to arrange for his return to home, but because the care home accept other residents with COV-19. I cannot accept
him home until my sons whom are extremely vulnerable to have the COV 19, are vaccinated
but find there is no help to get this more fast tracked by the NHS and yet it was through the NHS system that took us all to where we are today, alone without husband or father and
lay the care responsibility bill on our lap!