Dementia Support Line
Real stories
Selling a loved one's home to pay for dementia care
Suzanne knew that selling her mum’s house to pay care home fees was always going to be sad. But going through her parents’ belongings brought back the strong bond she’d had with them both before dementia came along.
'The rooms will look bigger without furniture,' said the estate agent, so getting rid of beds, wardrobes, sofas and armchairs was what we did first when selling mum’s house.
The Parker Knowles 3-piece suite was snapped up by our aunt, who promised to keep mum’s posh sofa in the family. Mum and dad’s ‘his and hers’ old-fashioned wardrobes and chest of drawers went to a charity that upcycles furniture. And so, item by item, we tried to be good citizens and keep stuff from landfill. We put a few bits on eBay to try and get quick cash towards care home fees.
Turned down on a loan for care home fees
My sister and I have had to sell the house rapidly, having been turned down for a loan for care home fees from the local council (a deferred payment agreement).
Mum, who is living with Alzheimer’s and vascular dementia, moved into a care home last summer and that’s when we applied for the loan. We knew we’d have to sell the house but we were shocked at how quickly it had to happen.
From what we’d read about deferred payment agreements, we believed they were automatic. We had somehow understood that if your parent’s in a care home and their bank account dips below a certain amount, that you were entitled to some state help, albeit a loan. We were wrong.
The council disagreed that mum should be in a care home and refused to loan us a penny.
I wrote a long letter spelling out why we felt mum was no longer safe in her own home – her various falls, the way mum was taking a double dose of pills that you should never take an overdose of, mum’s spiralling anxiety and her frequent visits to the hospital because of that anxiety. We had become a serial user of A&E and we couldn’t break the cycle.
I also explained to the council the steps we’d taken previously over the years to keep mum in her own home – gadgets, home adjustments, daily carers, meal on wheels, online deliveries, and a weekly rota for visitors.
But to the council, it was our word against theirs. They did not want to believe us.
Yes, the council did come round to look at mum’s needs but the assessors had a checklist: "can mum wash and dress herself?", and, "Does mum eat well?" The checklist did not ask: "Are you regularly taking an overdose of your tablets?", or, "are you regularly ringing 999 and ending up in A&E? "
Moving mum into a care home
So finally, we gave up on getting help from an uninterested council. We took a gamble to try and improve mum’s mental wellbeing and it has worked out better than we ever imagined it could.
Over the summer we took mum to see a couple of care homes. She liked the gardens and the upbeat atmosphere at one of them.
And after a week where mum rang 999 on 3 days in a row, she finally agreed to try one of them. And it was a relief for us, her daughters.
Nudging mum into a care home was a hard, hard thing to do: mum loved her garden with its fuchsias and foxgloves, the greenfinches on the bird feeder and blackbirds pecking on the lawn, the neighbour’s cat that she always tut-tutted.
Now our mum’s really thriving in the care home – she has a better social life than we do and has sweet people around her night and day.
There have been no more visits to A&E. The caring staff are doing a much better job than my sister and me. And that’s what we have to hang on to as we surf the weak UK house market this winter.
Clearing out mum and dad's house
And so, after the furniture, paper was the next big thing to deal with. It felt like Mum and dad hung on to every single receipt, bank statement and hospital appointment reminder. Dad was meticulous and in those non-digital decades, I guess you kept everything just in case.
There were boxes of papers in the loft and concertina files of papers in cupboards, upstairs and downstairs. It was overwhelming because you can’t just toss the lot into a bin liner - you need to go through it to make sure you don’t miss something valuable, like the deeds of the house you’re selling.
Sorting through Dad's belongings brings back memories
Going through it took time. Things leaped out at me. A local newspaper article from the ‘70s tells readers about Dad and his hobby, collecting Victoriana.
Every Saturday, in a field in Kent, dad went digging through layers of burnt ash at an old rubbish dump for glass lemonade bottles (‘Codd’ bottles) and ink bottles. He lugged them home to clean them back up to scratch.
The Victorian dump was full of these green and blue glass treasures - Dad sold them in bulk to buyers who flew in from Canada and the US, taking their pick from 50 or so bottles laid out on mum’s dining room table.
I was thrilled to find a manuscript of a book Dad wrote ‘Victorian Vessels’. It told would-be collectors how to scout for a Victorian dump to dig: 'Search for elderberry trees and stinging nettles as those two things and ash dumps go together.'
Dad advised people when seeking permission to dig the land, to 'avoid farmers’ mealtimes, milking times and harvest times (I should know – I’m a farmer’s son)'.
The chapters were hand-written in his unmistakable squiggly handwriting that always takes a fair bit of deciphering. The book was never published but what an achievement for someone who left school at 14.
Another newspaper article, this time framed: ‘Pupil power: children sign petition to save caretaker’ reminds me how principled Dad was. He was a school caretaker in the ‘70s, fighting cuts to save colleagues’ jobs. He took pride in keeping the school gleaming and used to say you could eat your school dinner off his floors. (We never tried it!)
A tiny building society book (The Leek and Westbourne) records the 11 pounds 5 shillings and sixpence Dad and Mum paid monthly toward a mortgage. The book’s dated 1969, when Dad worked as a railwayman, and the mortgage is for the house we’re selling now to pay mum’s care home fees.
Dipping into Dad’s belongings like this, in the house I was born in, has helped me re-remember Dad, who passed away in 2013 from the complications of Alzheimer’s and vascular dementia.
At the very end, Dad had stopped eating. He was skin and bone, hooked up to a drip in a care home, in and out of consciousness.
And this upsetting image has, for the last 6 years, been blotting out all other images of who Dad was. And with this house clearance, sad and swift as it is, I’ve been piecing Dad back together again, reconstructing Dad.
And now the house, emptied of furniture, paper and Victoriana, no pictures on the walls – it’s been emptied of mum and dad… at least it makes it easier to sell an empty shell now I’ve got my memories back.
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Molly Brown
saysMy late husband had Alzheimer’s dementia, and during the years we lived with the disease I guess I was on a treadmill, that kicked in everyday. I purposely woke early every morning, I still do and it’s been almost two years since we parted, but my early mornings gave me, “me” time, to bathe and go to the loo, strange that that is so difficult to do once they are awake. Out of sight, was out of mind, he had to be able to see-me, always.
I used music and old films, to ease us through our days, which Ofcourse always began with the washing changing and dressing routine, something like having an overgrown baby, though I hope I never gave him that feeling. He used to say, I did it because I liked doing it, well after 50+ years, why wouldn’t I.
I did pay for professional help each day, morning and night, to physically help us from his bed, to his chair in our other downstairs room, and reverse on an evening. I could not physically manage without them, although just once or twice when a not so good carer let me and the firm down I had to manage alone.
I believe that every person with dementia reacts differently, we may look similar, in most cases but we are individuals, all different, in our own way, and having Alzheimer’s affects us all differently.
My husband as well as losing mental capacity also lost physical capacity too. In fact apart from spells of confusion, the physical signs were at first more apparent.
We started with a walker, and I had a dream that over the period of a summer, going a little further, each time we would make it, to our local park, a few hundred yards from our home, that never happened, we once walked from the back door to the front door outside, as we are only four doors from the end of a street, and you can go around the bottom house and come up to your own home again. It took a long time and even more energy, but once begun we did it. I never tried again, just to walk a few steps indoors with someone else helping us was a twice daily achievement.
Eventually that too was, and pardon the pun, a step too far, a wheelchair became his legs, and then an electric one.
A friend of a friend who wanted a little job, came twice a week for three hours, giving me a good two hours to rush around the town buying food etc., each week. Whilst the sat together, watching, Dads Army, or Open All hours, or listening to old songs, which he seemed to enjoy.
My favourite that takes me back there, was Lena Martell, singing, “One day at a time, sweet Jesus, that’s all I am asking from you.”
So many of you reading this will be on the treadmill, because whether the one you love is with you at home or in another’s care, it is a life made up of days, one day at a time.
Would I wish him back to cure my loneliness, the loneliness I never admit to, No, I wouldn’t wish him another second of his struggle, but did I love him despite that disease why Ofcourse.
Take care on your treadmill, give them a hug if you can, with this dreadful virus, those we love who aren’t in our home anymore, we can’t hug, but you can still tell them that you love them now and always, because inside their disease ridden mind and body is the person they once were. God bless you all. XX
Mark
saysI’m struggling getting a mental capacity report for an old friend of 99 who has a memory issue but Not at all to say that she can’t make an intelligent decision. I’ve called the doctors and the office lady said you can’t get an assessment done through the doctors which I really can’t believe. The purpose of the assessment is at a solicitors request for legal reason to alter a will and removing a lasting power of attorney as the lady in question doesn’t trust the current LPA who incidentally is expecting a large part of her estate upon the ladies death. She is a dear lady with all her faculties and I really can’t see why she should have to have a capacity report just because the solicitor warned her that the LPA and beneficiary of the will could challenge her decision to use someone she trusts in a court of law. She only wants to safe guard herself in the future and as for the local doctors secretary saying they can’t offer this to her and that she seek outside private help and pay to see a psychiatrist it’s beyond me. If a general doctor can’t tell if someone can make such a simple decision then who can. I really need some urgent helps so she can get some help as this lady is really vulnerable should something serious happen to her mentally as she will be stuck with this guy she doesn’t trust.
Anonymous
saysHi there Mark, thanks for getting in touch.
It might be worth speaking with one of our dementia advisers on 0333 150 3456. They can talk through the situation with your friend to provide advice and support. They're available seven days a week - you can find the opening hours here: https://www.alzheimers.org.uk/dementiaconnect
Our advisers can’t offer you professional legal advice. But they can tell you about organisations that may be able to.
We hope this helps, Mark.
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Alzheimer's Society blog team
Mike Heather
saysAs an ex pat who has lived in NZ for the past 48 years, it saddens me to read your story. My wife has had dementia for the past 5 years and it reached the stage last year when I could no longer look after her. We found her a secure care home and although I pay 35 pounds a day for her care we are safe in the knowledge that the family home and car are secure as long as I live Good news is that my wife is as happy as can be and the family are not put under undue stress at this difficult time.
Angela Grainger
saysThanks for sharing this. My Father also had vascular dementia and Alzheimer’s and passed away in 2013. My Mum at the same time, had Alzheimer’s and they both lived 250 miles away from us. I managed finally to find a lovely live in carer who looked after my Mum in between our visits. After two years he got married and needed to start a new life, so I had to find a care home close to us. We had to sell the house to pay the fees, which is traumatic in itself but reading your comments about the paperwork has brought a smile to us. I think my Dad too had kept every bill, receipt every phone bill etc since the were married in 1948, and like you it was all mixed up with current paperwork. Fortunately the care home we found for Mum was lovely and what a social life she had, almost to the last weeks of her life. Mum passed away last February, but although she didn’t know who we were for the last two years or so she was happy and for that we are very thankful.
Helen Barbour
saysThanks for sharing this, Suzanne. Our late parents both had dementia and I have been dreading clearing their house, which we need to do in the next few months. However, your description of how doing this brought back your memories of your mum and dad as they were has made me feel a little more positive at the prospect.
Paul Taylor
saysThank you for sharing. Having done the same to free up the house for rental 5 years ago, it's totally gut-wrenching yet comforting at the same time. Wishing you all well and glad you see the unexpected positives.
Elizabeth Beveridge
saysI didn't realize that someone can have more than one kind of dementia at a time until I read this article.
Anthony
saysSuch a sad yet beautiful story😔
Makes me wonder how to deal with my wife’s Mother, she was diagnosed 5 years ago, between my wife and her brother she has been looked after at home.
It’s getting harder every day.....
No help available due to her savings....
Guess care home is looming but you hear so many negative stories about them ..
Suzanne amos
saysThanks very much for your comment.
And yes, we do hear a lot about bad care homes... I’ve had experience of 1 bad one and 2 good ones. I just really want to emphasise that there ARE good care homes out there. I want to emphasise it because I know how hard it can be for us to care for someone at home, during their various stages of dementia - for example if they experience symptoms such as sundowning, hallucinations or spiralling anxiety. There’s no point us running ourselves into the ground for our loved ones - after all, if we get ill, who’s going to look after them?
BAGreaves
saysThankyou for sharing your story. It does help. My mum passed 3 years ago after 15 years of suffering. When the end comes it’s a relief for all. The suffering is so hard to cope with by how do they feel. Does anyone really know. I feel they are kept struggling for so long. She was depressed in pain and unhappy mostly. Cruel to keep them alive for ourselves. RIP forevermore.
Sue
saysDear Suzanne, thank you for sharing your story; I hope your Mum is happy in her new home, it is such a relief to know she is safe and being well looked after. Your story makes me feel sad as we had a similar experience with our Mum. She was adamant that she wanted to stay in her own home but after a few years, this became impossible for us to manage. She would wander and get lost, she was unable to cook, clean, pay bills, it became dangerous to leave her alone. The council did allow us the 12-week disregard and then a deferred payment until we sold her house. Clearing the house was extremely upsetting and much of it went to charities. Mum has been in the care home for 18 months now and we are pleased with the care she receives (it is a small home of 16 - 18 residents). Her Alzheimer’s has progressed, it makes us feel so sad to see her like this. Her funds will eventually run out, each month it costs almost £4,000. I wish there was more facilities available (mum worked too) and I wish they didn’t cost so much.
Gill Harris
saysVery well written and helpful for people going through a similar experience. Shows a lot of love and exposes the inadequacies of the government to help the vulnerable. Good to hear she's happy.
Debi Thomas
saysDear S & S, what a wonderful and heart wrenching story to read. I remember Uncle Frank & Aunt Doreen fondly from my visits.
Debi Amos Thomas
Louise Prouse
saysThis could have been MY story. Now mum has passed. 😢
Tracey
saysIt’s horrible you work all your life’s and save up to buy your home and pay national insurance stamps and when you need help it’s not there it’s disgusting you have to sell your home to pay for something you’ve been paying for all your life just to get help your entitled to x
Christine durnion
saysThanks for sharing your story it does frighten me of whats to come i am 64 and was diagnosed 3 years ago i have 3 daughterd and a marvellous husband but the future is frightening