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 in the middle of lockdown. Rebecca worries her dad's dementia will have progressed further by the time the care home allows her to to help care for him. Rebecca is calling on the local government to step in.

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, he 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. His mobility is much worse too – he’s had three falls recently.

I know best how to care for him so I asked to go in and help but was told no – garden visits only. 

Rebecca with mum and dad

Rebecca celebrating with her mum and dad before lockdown.

This isn’t a criticism of the care home or its staff. I totally understand their point of view. They want to keep everyone safe. But the number of coronavirus cases locally are low, so why are the rules so strict? Why are some care homes allowing inside visits but not ours? Why can’t a family member wear PPE and have closer contact?

I’m 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 care home hierarchy to have a ‘can-do’ attitude. Where there’s a will there’s a way. I wonder if it’s a misunderstanding of what the guidance allows that’s preventing them from being more creative.  

Worries about the winter  

I worry about a second spike and further periods of lockdown. By the time we’d get to see my dad he would be much further into his dementia.

I need to know the care home is going to bridge the gap between families and their loved ones. I need to know I’m not going to be living the next six 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 six months. That would make me so furious. 

Care homes are trying their best but sometimes they’re getting it wrong and making decisions which don’t seem logical. Local Government must step in and give people their lives back. 

Stand with Rebecca 

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

As care homes look to re-open safely, or face a local lockdown, families must be more involved in the care of their loved one with dementia. Our recommendations to local government can make this possible. 

Support our campaign to connect families during coronavirus

Join our campaign to hear more about how we're supporting people with dementia in care homes and how you can help. 

Join our campaign
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20 comments

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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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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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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 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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I 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 😢

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I 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.

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Are 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…

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This 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 .

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I 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.

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How 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.

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My 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

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Hi 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

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I'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

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You 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.

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Freddie 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 .

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errr 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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Freddie - 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!

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I 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.

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