Dementia Support Line
Real stories
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.
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 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.
Rebecca's story was initially published in September 2020 and was amended in February 2021.
Joy
saysFreddie 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
Mrs White
saysMy 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.
Angie
saysMy 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.
Em
saysI am considering a legal action.
My uncle is in a nursing home with dementia, I haven’t been allowed to see him for six months. His only activities before lockdown that he enjoyed were listening to music, going to the pub once a week for a meal and a pint and seeing his family in particular my young son who always puts a smile on his face. Other than a few FaceTime calls which have confused him we have had no contact and no regular updates, I have been offered a window visit which I believe would confuse him even more. I am appalled by what is happening in the interest of “keeping him and the other residents safe” while what life he has now no longer involves the activities and family he loves 😢
Valerie Tilley
saysI would like to know how the virus is getting into the homes. We have had sparodic garden visits but, suddenly, stopped again because a resident has the virus. How is this happening when there are no visitors allowed in the building. So, once again, we and our loved ones are unable to see/speak to each other. Video calling is a no-no for us as he is far too confused. I think it would be far too upsetting all round.
Sue
saysAre you following John's Campaign who have asked for a Judicial Review of care home visiting. https://johnscampaign.org.uk/#/post/a-judicial-review-of-the-government…
Kelly percy
saysThis is so sad 😞 we are the same for my aunt it’s awful she also has vascular dementia but won’t leave her room she has been in a nursing home for 18month s my mum and I visit twice a week but haven’t seen her since March it’s heart breaking if I had an extra room I would bring her home the home were meant to set up Skype but nothing has been done it’s heart breaking hope they sort something out soon 🔜 for all families as we need to see them before they forget us .
Joanna Malin
saysI am in a similar situation with my mum. She is declining all the time in a care home with vascular dementia. She went in to the home last September, she was absolutely distraught and regularly cried or became hysterical. It broke my heart, I sobbed after every visit. She had just started to settle a bit when Covid happened, I was allowed to visit but only outside. Mum just doesn’t understand why I can’t go in, she gets so distressed and ends up crying to go back to her room where she feels safe (I assume). I have begged the home to let me in, I would wear every item of PPE, I would even pay to get tested if it meant I could spend just a few minutes with her in her room. The home is applying a blanket policy for all residents, but not everyone is the same. Mum is not handling outside visits, she doesn’t like leaving her room. It feels like no one cares about her and her needs. Yes I get that they are protecting her from Covid, but what about her human rights? She has a right to family life and is being denied this. It is a scandal and our loved ones are being treated worse than prisoners who are being allowed visits! Mum can’t fight for her rights, that is my job now, and I feel like I am failing her.
I am so terrified that she could only have days/weeks/months left and she is spending that in solitary confinement, even for someone without dementia that would feel like torture.
Valerie Tilley
saysHow I empathise with you. Received notification today that no visits until 22 October at earliest as 1 patient has the virus. We have had only 6, 50 minute visits in 2 months. Was due one last week but it was cancelled. I am in despair. Suggested I have a video call but that will be more unsettling for my husband. He has hearing problems. I don't know which way to turn. I accept it's not the Home making the rules but some out of touch bod whose title has gone to his/her head.
Pam. Soane
saysMy husband has been stolen he tries to reach out to me and does not understand why l can’t touch him lwant him home and have planned everything carers he has a 117 but authorities have made it impossible and will not fund enough money for his care at home l will have to sell the house l need £600 a week to pay a to up it is killing him faster to be separated from me do l give the house up
Anonymous
saysHi Pam,
It sounds like you're going through such a difficult time. Please know you can call our Dementia Connect support line on 0333 150 3456 for advice, information or emotional support. Our dementia advisers are here to listen and provide support when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/
We hope this is helpful, Pam.
Alzheimer's Society blog team
Michelecadman
saysI'm in the same situation as Rebecca. My dad was diagnosed in 2015 and his health has declined he is now in a dementia care unit. We wanted help to change his medication but instead the hospital have made it impossible for him to come home as they say he needs 24 hour care. I have cared for him like Rebecca for 6 years and I have now been told j cant do this on my own any more.
I feel sick to the stomach not knowing when I will see him again
Freddie Davis
saysYou must understand that care homes are trying to protect all their residents. My mother is in care and I appreciate all the hard work and dedication those carers are devoting to everyone. Stop being so single minded, all families are in the same position, we all have to be patient and accept the current restrictions.
P harden
saysFreddie yes i understand care homes have to keep there residents safe and they are doing a wonderful job .and yes we have to accept the current restrictions BUT IT IS NOT JUST older people in nursing homes all these people are NOT being single minded .how would you feel if one of your children was in a home and you have not seen them for 7months at least and window, garden visits a no no .and touching was a vital part of seeing them before the virus hit .
louise goddard
sayserrr hang on a minute, we all have to accept the current restrictions?? do we. at what cost?? no one is questioning whether the care homes or staff are doing an amazing job, what we are saying is, that this has gone on long enough! as the whole of society is getting on with there lives, why are the elderly in care isolated and made to feel like prisoners, are they not entitle to enjoy the rest of their lives. i can never have the last 6 months back with my dad, he will be 90 in 8 weeks time, he has no one, only me, he has dementia, he doesnt understand whats going on, or where i am, and why i have abandoned him, have you lived with the loneliness, guilt and grief for the last 6 months. Care homes have not been mentioned at all lately, all we hear is how badly done to the poor students are, who have had their freedom for the past 6 months, moaning about being stuck inside for 2 weeks, my heart bleeds for them, they should be glad they are not old.
matt hancock promised weeks ago he would look at getting the next of kin, into care homes whatever it takes, we should be the support bubble, as we are theoretically their carers as well.
no one is being single minded. we are fully aware that we are all suffering one way or another, but i do not think i have ever been so sad, so guilt ridden and so helpless in my life.
i am not prepared to waste any more of my dads precious time, whilst the idiots running the country piddle about with their lies and stupid ideas, its a virus, its contagious so is a cold and flu, if it kills someone so be it, so does cancer, pneumonia, and many more, thats life i am afraid, its for living and we and our loved ones human rights should allow us to do just that!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Lee
saysLouise I totally agree with everything you say, u can have a support bubble with u friend but u can’t have 1 with a family member, as long as you wear a mask, wash you hands and keep 2 metres away can’t can’t see a problem, u are right the government is run by clueless idiots, my antie lost her husband and she’s lonely, she knocks the house I said come on in, she said she can’t cause of the virus, I said ok I meet you down the pub, when there’s loads of people there getting drunk, using the same toliet, the government sucks how the hell could it be safer meeting someone in a pub, than you own house, my father got dementia and he don’t know me half the time and he lives with me, something needs to change, in care homes and in hospitals
Rebecca Fenty
saysFreddie - everyone in a care home has different needs and depending on how advanced someone's dementia is will mean different care plans should be established as the impact on them will be different. Not all care homes are the same and people may not have had as good an experience as you clearly have in your Mother's care home - you should consider yourself very fortunate if you are satisfied - not all families are in the same position (as you stated)! One size does NOT fit all!
Valerie Tilley
saysI have written to everyone I can think of to highlight the plight of care home residents suffering from dementia but have received only one reply from my MP. No-one else wants to know. They are too busy slapping themselves on the back for encaserating our loved ones for months on end with no visitation rights saying they are keeping them safe. Utter rubbish. They should bow their heads in shame for making such false statements. What planet do they live on? Why can we see what's happening to our loved ones and they cannot.