Rebecca’s story: ‘I need to have some proper contact with my dad in his care home’

Rebecca’s dad, John Carthy, who has dementia, went into a care home at the beginning of the first lockdown. Rebecca worries her dad's dementia will have progressed further by the time she's allowed to help care for him. She explains why she’s signed our urgent letter to the Secretary of State for Health and Social Care.

Becoming isolated

My dad was diagnosed with mixed dementia in 2015.

He always loved to socialise and walked every day. Mum and I were struggling to cope as he declined in the last year. So, in April 2020 we decided to move him into a care home. We never imagined lockdown would continue for as long as it has.

It was very difficult putting him into a care home during coronavirus. When he went in, he had to isolate in his room for 14 days.

Rebecca and John talking over video call

John and Rebecca talking over video call after John had a fall (left), during a garden a garden visit (middle) and a happier video call (right).

That was a really difficult time. We wrote him 14 letters, one for each day, and rang him twice a day.

By the end of the 14 days, Dad had got into the habit of not coming out of his room so now he stays in there most of the time, getting little stimulation or exercise. The care home keep telling me, ‘He likes his own company.’ No, he doesn’t. He’s a very sociable man.

When we speak to him on the telephone he’s confused, asking when we are coming to get him. It’s heartbreaking. I know he’s really struggling.

I can’t go in to see him 

Dad is very proud and was always smartly dressed. Lately his appearance isn’t as good. I used to cut his fingernails, shave him, get him up and dressed every morning. Dad's mobility is much worse too – he’s had more and more falls. In December, he had 11 falls in two weeks.

The doctor also had to increase Dad's dose of Memantine (an anti-psychotic medication). If I was able to provide extra care, I would be able to help with some of this.

I know best how to care for him so I asked to go in and help but was told no – despite now having had my first vaccine and being tested twice a week, I am not deemed safe enough to care for my dad.

Rebecca with mum and dad

Rebecca celebrating with her mum and dad before lockdown.

We need to do what we can to beat this virus. But people living with dementia aren’t just dying from COVID-19, they are dying from the loneliness that a lack of social contact brings.

As the Government plans to relieve national lockdown restrictions, they should prioritise a timetable for care home visits and provide transparency on how vaccinations impact these visits.

I am also told if he attends his hospital appointments he has to isolate for 14 days again. People outside of care homes don’t have to do that. I either take Dad to his appointment and then he has to self-isolate which will make him decline more, or I decide not to take him to appointments – and he’s got a heart condition and glaucoma. Either his physical health or mental health is going to decline.

My mum is blaming herself for putting him in there. She’s spiralling mentally, thinking, shall I take him out? But she can’t because she wouldn’t cope. 

I begged for him to go into the care home. I thought it would be a relief for Mum and give him some stimulation. It’s gone completely the opposite way. We miss spending time with him so much. 

I want the Government to have a ‘can-do’ attitude. I fear that there is a real possibility that, should the Government not take urgent action, visits could remain stopped until those in JCVI priority 1 groups have had their second vaccination, which could be three months away.

Wait until May? No way

Almost a year into the pandemic, I don’t want any more time wasted. I don’t want my dad to be even further into his dementia by the time we get to see him.

I need to know I’m not going to be living the next three months as I am now. If I have to wear full PPE and be tested, that’s fine.

I will do whatever it takes. We need to have some proper contact. 

The worst thing would be if something happened and he passed away and I haven’t held his hand, given him a hug, or even had close contact with him in the last year. That would make me so furious. 

Stand with Rebecca 

The pandemic has caused too much devastation for families affected by dementia. 

The Government must prioritise care home visits in their upcoming roadmap to ease lockdown. These visits are vital to the health and wellbeing of people affected by dementia.

Stand with Rebecca

Our urgent letter has now been sent, but you can still stand with Rebecca in future campaigns - sign up here.

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Rebecca's story was initially published in September 2020 and was amended in February 2021.

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41 comments

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I too am fighting a battle, I'm trying to get my dad out of a nursing home but its a struggle. I've got social worker involved which proved of no use what's so ever, I've got solicitor involved and he wants answers from both nursing home manager and social worker, its got so bad now that the manager has stopped my dad using his phone to call me. Im seeking advice.

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My Mum has alzheimers.
For 4 years after my Dad died my role as daughter expanded to being her carer. Cooking, cleaning, gardening, shopping and seeing to her every need, steadily increased to 4 times a day, often night's as well as her Alzheimer's got worse.
I had to give up my job, as I had too many plates spinning with having 3 children as well.
We were just left to get on with it. I was no expert, and it was a steep learning curve. Every time I felt i'd got the measure of Mums latest issues, she'd go onto the next phase of her disease.
When ever I tried to access help for us, the first questions would be, 'has she got savings, does she own a house,' which strangely seemed to prevent anyone from being able to help.
It took me a while to work out that if you get cancer nhs will help you but not if your brain starts to malfunction from dementia?
Finally I had to admit I could no longer cope, and despite knowing it was the thing that she did not want to happen most, I moved her into a care home.
For every minute, of every day, for all of these years I've done my absolute best for her, sacrificing a lot and living and breathing all things Mum. A dependence and bond similar to that of a toddler.
Covid happened and suddenly I became nobody important? Carehome-front door shut. Ok for professionals to cut toenails and do her hair, paid carers, that don't know her past allowed in, but not me?
Mum is declining fast. Time is something she hasn't got, Her prescribed medicine should include me being part of her care, singing her favourite songs with her; reminiscing about trips to the beach; swim teaching; xmas's past; family holidays; her new great grand child taking his first steps who she met once soon after being born and never seen since; but most importantly of all, giving her a sense of being loved, not forgotten.
Enough separation and heart ache. Dementia sufferers have suffered enough. This isn't the Victorian sanitorium era of lock them up and chuck away the key, out of sight out of mind as it were? Safety yes, but at what cost.
Where required, a nominated family carer, needs to be recognised as a vital part of a dementia suffers care, and allowed access in the same way a member of staff would be, with all the same precautions necessary to keep themselves and others safe.
I don't profess to have all the answers. I respect care homes and staff are doing there best. I just know that this feels far from right and that change is needed now, and into the future. So this horrifying 6 year journey our family has been on, is made an easier experience for the next person, and their family, that gets diagnosed.
p.s. Our family home has been sold and is now paying for her care although I'm not sure she'd agree it was money being well spent right now in this latest lockdown.
p.p.s. Thanks to the Alzheimer's charity that gives a voice to ordinary people like me, that don't like to make a fuss, but do have opinions that need to be heard. My fingers are crossed that one day the powers that be will listen.

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I just put my husband in a memory home. I was told that I couldn’t see or hear from him for 2 Weeks. I felt that was to get him used to the new surroundings. I was wrong. After 2 weeks I could only see him through his bedroom window. I know if he sees me and can’t touch or hug me he wii get very agitated
. I fill very guilty about sending there. I was told that I couldn’t care for him any more. I was told by doctors that I this day will com. I am very upset that when you leave someone you love and care for that you loose them to the memory home.

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Reading Rebeccas story reminded me
I am not alone : there are so many families with dementia relatives that are suffering in silence, my husband went into a Dementia/ Nursing home in may 2020 His dementia deteriorated from January along with giving him 4 injections a day for his diabetes and sleepless nights I had to make the worse decision of my life to put him in a care home naively thinking it would be short term and I could visit him regularly
Now it’s been 10 months of guilt and heartbreak not being with him to even hold his hand and reassure and comfort him only visits through a screen with months of none when the home goes into shut down
He has deteriorated so much and is barely recognisable he has gone from walking and always smiling with a cheeky grin when he’s been up to mischief, to a quiet almost lost soul, unable to walk through muscle waste and loss of weight he survived the coronavirus which did claim a lot in the home and my heart goes out to those families but surely someone should be there to stand up for their rights as a human being and end this humiliating and heartbreaking situation
Please please someone out there speak for them 😢

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I am sad to hear so many of your stories.. My sister and I had to put our dear 92 year old Mum into a Care Home early January this year after she had a fall last October which has worsened her Dementia...She survived catching Covid in Hospital too...However We fully understand the need to restrict visiting currently both for her well being and ours and the Home has been fantastic in keeping in touch and we are able to talk to mum on facetime or by phone as are her sisters and brothers..
Many activities are still going on there and I know she is not at all stressed as always happy when we see her...It would appear that we are the lucky ones as the degree of Mums dementia means us not visiting has not affected her and my sister and I appreciate that the Mum we knew and still love so dearly has gone from us but is still enjoying her new life and all that it offers...Our Dad died December 2019 after a fall and also had Alzheimers and it was heartbreaking to see him deteriorating as he did at Home but we were lucky to have had him till the age of 94...we do feel that families must appreciate Care Homes are working under extremely difficult circumstances and have certain Local Authority /Government rules they are obliged to follow...It will only create more stress for the families if they continue to pursue avenues to which at the moment there are no answers...Your loved ones would not want this I am sure..Please be patient..

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Rebecca’s letter could have been written by me substituting her father’s name for my darling wife Maureen’s name. There are no words to explain the angst and sadness that I am experiencing and no doubt Maureen is experiencing also. The time has come when a form of normal visiting must be put in place ... this virus is not going to disappear overnight and some bold decisions must be made.

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The home that my dad has been in, has had money spent, to build a room, so that we could visit him and chat to him via a microphone, it was completely sealed, exit through a outside door, thus having no contact in any way, with my dad or any other person, in the home, but still not allowed to visit, what a waste of money, which also took about 5 months to make suitable, he doesn't come out of his room much, cannot watch TV, as cannot use the TV remote. So virtually just sits in his chair all day.
Why can't we visit?

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What price safety ?? As a nation, in years to come we will hang our heads in shame for the way we’ve treated our elderly .

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My father was in a care home at the beginning of lockdown he was in hospital having had a stroke, when he went back into the home he was in nursing care on a different floor. We were not allowed to visit and even at the end we were told we could not see him, my dad was terrified of dying alone. He did die alone I think it is heartless and cruel I would have done anything one any PPE to be able to have seen him and stay with him for those last moments.

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Hi Rebecca I really feel for you. My mum has severe dementia and is deteriorating on a weekly basis. I have cameras in her flat & carers going in 3 times a day. I would recommend you get cameras in his room so that you can monitor them yourself. We brought blink from Amazon and it is the best £250 we have ever spent.

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Another sad sad story the same as us and so many families of loved ones are going through the same. We need urgent help too and our loved ones in Care Homes iIt is having a devastating affect on all of us. Our Wellbeing is suffering. Help is needed now enough is enough .

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Take him home.. now ... I took my wife home and she is 150% better

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Yes. More people our working a t home and care for their love ones.in their or your home, other countries care for their parents at home, it's a family , some countries don't. Have
Nursing homes we take care of family, we make time to care for them, you can provide the best care for your loved. Ones quality of live

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We ,are going through the same,no one is listening,we are forgotten.I wit tness tears everyday,not just my own ,90 year olds never been separated in their lives,having to be put on antidepressants they can not cope .This is not living it is hell watching your loved ones fade away ,never being able to give them comfort.

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Stay strong as there is little that can be done. This is a disease that issues a warrant for life as we know it. Beyond this there will always be life! Lost my mother in November. Understanding in the beginning is easy, but not the future till we reach for the stars for some understanding of the future.

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This is the same story as my mums, I feel we all need some contact, it's physically painful for us so what my mum is feeling is beyound

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Please help our poor family who dident have the best life dont make and of life so cruel we want our parents out even for a walk or ride in wheel chair not a prison with no staff for communication it's to cruel to think about but that's happening to our elder generation please gov stop it now sad way to pass lonely ignored proper no human rights

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I work in a care home and we so hard to keep covid out we change our clothes when we get into work and change them again when we leave, I have spent a small fortune on scrubs for this. I literally sweat in autumn with all my ppe on but it is worth it to keep covid out, You wouldn't believe the poor education the community have on ppe not wearing a mask properly for example and it only takes one person to bring it into the home and then every resident will have to self isolate and I have cared for people with covid on end of life it is not a nice death. I think staff would have a nervous breakdown if covid got into the home again it is heart breaking to see a resident due in pain.

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Helen - I too work in PPE all day as I work on a ward at the hospital so I am not naïve as to how PPE works and every care home is working differently and everyone's journey is different. My experience with my Dad and his deterioration is why I am desperate to be able to have better contact with him. I am a responsible person and understand how to use PPE and would not put myself or anyone else at risk but some of the rules in SOME care homes are causing distress for the residents and their families. You are correct not everyone is as knowledgeable but the risks can be minimised.

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It is wonderful to hear about the great work you are doing in your care home.
But at the end of the day, it is inhumane to keep residents locked away with no hope of any contact with their families.
We families need to know when we can go back to seeing a loved one, even if it is just one member of the family, who is isolated, vaccinated, using rapid testing and wearing PPE etc.
Yes, there is a risk that covid may infect residents (my mum's home recently had 4 residents and 2 staff test positive... No visiting is allowed so it must have been unwittingly bought in by the staff, who were asymptomatic when tested) but all residents have had their jab and all 4 have recovered.
Residents cannot be kept cooped up forever - sorry but that's the truth.
Keep up the good work.
Best wishes x

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I work with residents living with dementia.
This is a very difficult time for families.
The residents safety is our upmost concern at this time, but believe me when I say this breaks my heart for my residents and their families.
All we can do is continue each day ensuring our residents are cared for to the best of our ability with safety at all times.
Engage our residents in regular activity reminding the residents each day by showing photographs etc. I believe for most video call etc is not good for most of my residents as they are confused and can make them agitated which is not good for their wellbeing. We keep families updated daily by telephone. Let's hope visits can commence soon 🙏

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My mum passed away just over 2 weeks ago. She was in a care home for the past 3 years but during lockdown she deteriorated and had 3 falls, before this she was very active always dancing helping with the washing etc. Then it all changed she fractured her wrist after one fall and was sent to hospital where she has a cast fitted then sent back to the care home on a stretcher so clearly unable to walk was sent back via ambulance the next day as the care home could not take proper care of her in a condition where she couldn’t walk. She was in Aintree hospital for over 5 weeks on a ward (25) where she was clearly neglected she lost over a stone in weight became doubly incontinent probably because she was unable to walk or communicate at this point through no stimulation and neglect she had no TV no one to come and visit. To rely on a normal hospital ward who don’t really understand dementia is not ok! My mum kept getting urine infections and was moved around very confusing for her. She finally left Fazakerley hospital to go to end of life care in a nursing home which the council chose as with Covid we didn’t have a choice. My mother was dirty her clothes were dirty she had sticky stuff in her neck where something had spilled. Her teeth were caked in food all gone grey looked disgusting she looked like she had come from a concentration camp not a hospital. Afterr 5 days she had to go back to have her cast removed at the hospital and they found her fracture had been a break and it had been set wrong. Nothing was done as she passed away the following week. It has been so traumatic for us as a family I can’t even imagine what my lovely poor mum had been through and we feel so guilty.

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Thats so heartbreaking...my mum passed away on 4 September in her care home where she had been for 3 and half very happy years. Last 7 months changed her and I think she missed my regular visits.. I went every other day for several hours. The care home staff are truly amazing I can't fault them...but they're not family.
Miss my mum so so much but I couldn't have managed through another several months if hardly seeing her and Skype calls which she didn't understand due to her dementia...clearly mum didn't want to go through it either.

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Freddie Davis what a dreadful comment to make, slating us for being "single minded"
We have not been able to see our Mum since 14th March.
There have been a few random what's app calls in the spring, which Mum cannot comprehend anyway.
No consistency with communication, no updates whatsoever, no garden or window visits either.
Our loved ones lives are limited, we may never see them alive again.
They are being held captive against their will.
Matt Hancock dangled his carrot in early summer saying care homes were reopening, still nothing, it's now October.
Hospitals allow visitors for inpatients but care homes are making their own decisions and not communicating and depriving our family members of their liberty.
Its cruel, heartbreaking and barbaric.
Where is the transparency and clear communication?
Head in the sand and family members will go away.
Who is the voice of care home patients ?
It's obvious they are being ignored.
If we could bring our Mum out of residential care and look after her ourselves we would, unfortunately her needs are too great now.
Shameful situation

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My husband also had been in a care home /nursing, but became very ill. The home didn't phone to tell us. I was unwell three days and couldn't visit, which l used to do every day. But was blessed arrived at the home, after l rang them, my cab arrived just as ambulance arrived. When he was able to leave hospital my son agreed with me we would have my husband home.with us we talk to him,l sing to him. Yes it's not easy, but am so happy he's with us not in care. He has carers 4 times a day just for personal care, we do every thing else. My heart goes out to everyone who had to put their loved ones in care homes.

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My Mum & Dad were in the care home together, my Dad died end of January, the care home locked down in February so my poor Mum is grieving for he husband of 70 years without her family to support her. She is 92 years old with vascular dementia. She writes letters to me to say how she cries and feels like she is in prison. Her care home has basically stopped all communication with families except for their invoices. It is a disgrace, she needs quality of life, not quantity.

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