Kathy and her mother walking and smiling

Coronavirus restrictions in care homes: ‘Bit by bit, Mum is forgetting who I am’

Kathy has been separated from her mum, who has dementia, for eight weeks. Like many other families, Kathy is angry about Government’s lack of planning for care homes and believes people with dementia are being ignored.

Kathy’s mum, Mavis, is 90 years old and has Alzheimer’s disease.

Mavis lives in a care home in North West England, which is currently closed from visitors because of coronavirus.

Being unable to see her mother in person for such a long time is a great cause for concern for Kathy.

Kathy is worried about Mavis’ mobility deteriorating because of fewer opportunities to walk during lockdown.

But much more importantly, she is worried about Mavis’ cognitive decline and lack of wellbeing.

Kathy and her mother Mavis, smiling

Doing all I can to stay in touch

Kathy has tried to keep some face-to-face contact with her mother through video calls. But while this virtual method works for some, it doesn't work for others.

Mavis doesn’t like video calls. The past few times they’ve used this method to talk, Mavis hasn't recognised her daughter.

‘My absolute main concern is that bit by bit, Mum is forgetting who I am.

‘It's heart-breaking.’

‘When we were able to meet up, I could nudge the needle on the broken record and stop it getting stuck. For the hours we were together she knew (roughly) who I was. But using virtual means, that's impossible.

‘It isn't just once or twice that Mum hasn't been able to recognise or understand who I am when using FaceTime... it's every time.’

Trying to stay positive

Focusing on the positives is hard when you’re caring for someone with dementia from a distance.

For some time now, Mavis’ strongest memories are from her childhood. She talks about her dad, her sister and other relatives who have long since passed as if they are still alive.

Kathy and the care home staff have always used reminiscence therapy in order to engage Mavis and keep her happy.

‘I try to concentrate on the fact that she is happy, safe and cared for right now. But she must have wondered sometimes why no one is coming to visit.

‘Alzheimer's disease means that even if she could understand about the dangers (which she can't) she won't remember.

‘Even though we try to explain that 'this flu thing' means we have to stay safe, we can see that she can't understand in the slightest.’

Kathy and her mother

An urgent need for Government action

Kathy understands why care homes need restrictions. But she passionately believes that the government needs to do more.

There needs to be a balance between the residents’ physical health, and also their wellbeing and quality of life. For Kathy, care homes in places like the United States and Australia have made a compromise between these issues that makes much more sense.

In the hopes of getting an update on what plans are being made for care homes, Kathy is sending questions to the government every few days.

She has heard a rumour that care home restrictions may last until the end of the year.

If that is the case, she doesn't think she will ever see her mum again where her mum recognises her.

Kathy says, 'I feel frustrated that the Prime Minister’s announcements are not properly dealing with this group of vulnerable people.

'People with dementia are simply being ignored.'

'I want the right to be able to see my mum in the grounds of the care home while keeping two metres away from her. This could be done in a way that would not compromise the staff or other residents.

'Or, I at least want reassurance that the government are thinking about how this could work.

'I believe a coordinated effort is needed from individuals and charities, like Alzheimer’s Society, to push Government to get answers.'

Calling for changes

People affected by dementia have been worst hit by the coronavirus pandemic – facing devastation at home, in their community and in care homes. The effects of the outbreak cannot be undone, but action can be taken to better protect people now, and in the future. To make this happen, urgent solutions must be put in place to better protect, support and connect people affected by dementia during the pandemic.

Alzheimer’s Society have secured a parliamentary debate on the shattering impact of Covid-19 on families affected by dementia. We have shared thousands of lived experiences with government, but you can also make sure your MP represents you.

Government must take urgent action

Help us maximise MP engagement in our upcoming parliamentary debate by writing to them to ensure they take part.

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225 comments

I believe the government have dumped on us and our loved ones from a great height! They don’t care about them or their mental health and what this is doing to them , it’s nothing short of barbaric keeping them away from us and us away from them ... my mum is in care and a great care home it is but I am seeing the decline in my mum and weight loss and there is nothing we can do .. the care staff are out and about mixing with their friends and families then going into ours and we are left outside waiting ! Then when you do actually find a person to speak to about how your loved one is doing they say fine everything is ok nothing g to worry about .. how about what it’s doing to us ! How about what it’s doing g to our loved ones! We don’t stand a dam chance the government have shut us up and shut us down and we are left anxious not being g able to be with our loved ones in their last few years .. I hope the government follow the same rules for theirselves if they have people on care !!! Oh no silly me their probably slipping in the back door to visit a big like popping out getting their eyes tested !!!!!’

It’s the “can’t do” attitude that is getting to me. Care home managers are simply hiding behind government guidance rather than being proactive and driving the agenda. My mum is 88 and is starting to go down hill now - rapidly - through a lack of meaningful activity. The risk of catching covid is far outweighed compared to being a vegetable. I’m thinking about bringing her home as all she wants is to see the family - it’s not a lot for her to ask really is it ? God knows how we would cope but it’s that or let her rot. Stark choices.

My mum 92 years is in a very good care home but the visiting is awful, coming out of a nice warm environment Into a cold gazebo is not a good solution, it feels like a prison visit no touching , stay back ,no hug , I realise there has to be precautions but surely a room indoors that can be sanitised after a visit would be more comfortable for the elderly and a bit more social, I worry our connection is going to be lost as I’m sure some time mum doesn’t realise how I am 😢

my husband went into care in March e has vascular dementia I looked after him for almost 3 years but I have had parkinsonism for 9 years am 82 my husband 86 married for 62 years and I am so worried what will happen to visiting when the winter comes and can sit outside elderly people seem to be of no consequence to anybody but their loved ones

My mum is 74 and is in a Dementia home.Me and my sister were visiting her but only allowed in the garden with full PPE but now only one person from one household is allowed to visit but I do not drive so it's difficult for me to go and it means that only one of us is allowed to see her but mum doesnt talk much and it's hard work with only one person as you need someone else with you to talk to if she isn't talking. We have tried video calling but she doesn't even want to do that now.
My mum still knows us but I'm worried that by the time we get back to seeing her she might not remember us. We were already loosing her but now it feels like we have already lost her.
We need to get back to visiting her. Miss her so very much.

I keep asking my dear husbands care home to let the next of kin be tested each week the same as the carers do an do all the things they do to be safe an then go back in to the home as before an help my dear husband he needs me now not next year but the manager just says no test on day may be ok but you can have the virus the next so mad as this can be the same for the carers just keeps saying the government say no

This is what I think too, the carers lead day to day lives go home to their families go shopping go out ? Why can’t we become key workers be tested to have valuable time with our family members ? Something has to be done before it’s too late.

Yes I so no what you mean my dear husband is getting so bad now he sadly keeps trying to get to me for a hug an I have to say no this is so heart breaking I just think the government do not care after all it is not there love one is it I am very sorry will not get in to care for my Pete before it is to late an what is going to happen for Christmas is it to be for same of us no Christmas this year Pete would came home for the day I was with my husband five days a week before all this an one day aweek he came home for the day

My Mum is in a Care Home with Dementia and turned 94 during lockdown. She is also extremely deaf. She is my only family. I'm her only visitor. To communicate with her I need to be close enough . I've been unable to do this for 6 months now. She no longer knows me when I visit - and will never again ...... I have to sit 2 m away with a face mask on...... I've been unable to hold her hand for 6 months and don't know if I'll ever be able to........(Has anyone held her hand in a caring way in the last 6 months ? ) Why can't relatives hold their loved ones' hands after sanitising ? It would mean so much.........

Sally I just read this although posted in August and it rang so deep with me, like you my mum is my only family. She hasnt been happy in the home for quite a while and I feel she is just "fading away" and Im totally powerless to do anything. I'm sure, like you, it is easier if you have other family members to share your feelings with, someone else to care with you. Just to let you know I understand and even as a stranger I feel you pain.

My mum is 90 and has been deprived of her family for 6 months here in Canada. The home has an internal garden where I would take her on my daily visits, it is just down the hall from from her room in the dementia wing. They have not allowed her to go there the whole spring and summer. I am absolutely appalled! It is time people, to bloody do something! Why isnt anyone fighting back in a real way? We need to get together somehow. I have let them know my frustration and that what they are doing is criminal. There are safe ways to visit but they are not implementing it. I am disappointed that the families are not fighting back, they are just taking it quietly. To the people here, why did you take this?

My dad is 88 and breaks down in tears everyday we have not seen mum for months she has a patio window but the home still will not let us visit because she is not mobile as visits are only allowed if residents are mobile this is discrimination to the immobile my dad says he is worried he will never see my mum again we all think the same why are homes doing this to families they have been together for nearly 70 years and have never been apart is there nithing we can do about this or is there somewhere we can go i live my life heartbroken everyday day somebody somewhere must be able to help

Get these care homes opened up for visitors. It’s just not fair. My dad would rather see me daily and be here a shorter time rather than once a week wondering where we are. They just don’t realise what it’s doing to us

My mum was admitted to hospital in June where I was allowed to see her twice, helping her to eat etc, she was then transferred to a temporary care home for 2 weeks, during that time they brought mum down to reception whilst I stood at a distance wearing my mask but at least she recognised me we were also able to face time mum when we wanted,,she has since been moved to a permanent care home which we have not been able to visit, we don't know what it's like inside or have not met the staff and feel it's a struggle to get to speak to my mum, you have to pre book a face time call with mum and today my sister rang and mum didnt recognise her or her grandchildren I feel that mum is slipping away from us and face time is not suitable for mum as her eyesight is bad, I could cry with frustration and worry that by the time the restrictions are lifted my mum will be in her own world and we would have lost her totally to the illness, I am waiting for a call from the home so that I can plead to them for better access

My mum had a stroke on fri in the care home
The hospital were brilliant and said could visit on the Saturday and Sunday.she was transferred to another hospital on mon.i phoned today tues to be told I cant see her as shes quite happy.ihad not see her for 6mths and doesn't look like I will anytime soon icant speakto her on phone as she is totally deaf.i seem I have now lost my mum and her needs
I am extremely close to my mum I feel I have now lost her. The initial worry now ongoing is making me I'll.

This story is exactly mine I have put suggestions to the care home I have emailed the MP I’m feel my husband is just abandoned I a building I know nothing about I just want to hold his hand while he still knows me and I haven’t left him please please help us all

We had to make the heart-wrenching decision to put my mum into a care home in Wales in June because her partner, her carer, had to go into hospital. Her social worker was all for her going into care, and not coming to live with family, because she was 'sociable' and 'outgoing' and would benefit from being around people. Since then, we haven't been able to visit her, apart from one time, 15 minutes in the garden behind a perspex screen, to make sure she's settled. The last time I spoke to her, via video messaging, she said she doesn't like it there but she knows she'll probably never leave because she's declining. It broke my heart. She hasn't left the home since she went there. She's fully capable of a walk round the park opposite the home, and desperate to do so. I understand why the staff at the home are erring on the side of the caution. They're doing the best they can and I don't think it's their fault at all, because if they relaxed the rules for a second and COVID-19 got in, everyone in the home will be at risk. They can't really do a 'can-do' attitude' because that puts them at risk of all kinds of repercussions, legal or otherwise. What I do think is that someone in the government needs to be working night and day with experts in the facilities management field to work out how to do this safely. And not just allowing family visits but allowing them out of the care home. They've managed to let pubs and restaurants open. My mum went in with dementia but still a lively character with plenty of life and interest in the world around her. I don't know how long that will last the way things are. And she's paying around 800 a week for this! I'm so sad.

I am so sorry that you are going through this with your Mum. It is heartbreaking. My Mum is ninety and also in care with dementia. I live overseas and am on immunosuppressant medication so I do not know when or if I will ever see my Mum again. Sometimes the sadness completely overwhelms me and I have to pause and calm myself for I honestly feel I could die of a broken heart. Lately I have tried to take some comfort from the fact that as Mum will more than likely not understand what this pandemic is, and perhaps this might be a blessing in disguise. My heart goes out to you 🌸

I feel you pain! My dad was admitted to a care home in May this year. A fiasco in itself and we still don't know if he can stay as waiting on social services to go to panel, all delayed due to covid19. Suffering from Alzheimer's for 8 years he had started wandering and was no longer safe in his Extra Care flat. Although he didn't really know myself and my sister were his daughter's he was always happy to be with us. His smiles were worth a thousand words. After no visiting for a number of weeks, only Skype calls, dad no longer has any recognition of us. It really is heart breaking. My sister and I had been able to visit outside for a few weeks but he clearly has no idea who we are and on one occasion refused to even come and see us. Visiting has now been reduced to only one nominated person. Still outside. How are we expected to make this decision? I appreciate we are not alone in this dilemma but I feel like things are going backwards. My sister and I are totally distraught by this. There has to be some changes to this policy for residents in care homes suffering with any form of dementia. We both fear we will never be able to get close enough to hug him and tell him how much we love him again. Surely the government/care homes have to balance safety with sanity! I have tears everyday and can see no light at the end of the tunnel.

I have even asked can I lockdown with my mum in her Nursing Home and have been told no! Carers are going home and even out to pubs and shops then going back into nursing homes next day its ridiculous! My mum totally bed nursed late stage Alzeimers and too poorly for window visit, plus she's on a top floor. Where is the hardship in letting me lockdown with her and care for her, she's dying and forgetting. . Makes me so angry

I have commented previously but thought it necessary to reply to your comment. My mother is late stage Lewy Body Dementia (LBD) and all autonomic functions fail including ability to swallow and to control body temperature. Because of swallowing difficulty I spent many, many hours feeding her and carers commented "she always eats well when you feed her". When lock down occurred I offered to help, using all PPE as staff do, to continue helping with this. I was thanked but have not been invited to do so. I know a letter has been sent to the Government to allow relatives in as key workers; I hope this succeeds!
In Italy they have been researching into the cause of care home deaths and are finding that COVID positive residents weren't dying of respiratory distress so much, they were dying of dehydration. This was due to the abundance of fear, understandably so with no or little PPE equipment, leading to staff spending insufficient time with residents to hydrate them adequately. The relatives of course had been banned so residents missed out on a level of care, which contributed to the high death rate.
Our mothers are in late stages and so likely have less time left; we are their advocates. My mother can't verbally express her wishes. When lock down started I kept up to date with goings on in the care home and was pleased to see residents out in the garden in the sun over Easter. However it transpired my mother wasn't one of them. She had COVID like symptoms caused by LBD and a hot room, small room with a window that only opens 2.5cms so she spent 6 weeks in isolation. She tested negative for COVID but I really felt like she didn't count as far as the care home was concerned. I only found this out because I Skyped her often and saw she was in her room all the time and I asked a staff member, why?
I am very pleased that visiting is being allowed but there has to be consideration for the types of residents and how they benefit. Those that are bed ridden, unable to walk and talk have different needs which must be addressed. I have worked and taught nursing in several countries for many years and have a Ph.D in cognitive neuroscience. As a nurse I always valued and encouraged relatives to visit. Relatives have a very valuable role and if, as you and I and many others have done, offer our time freely, we should be allowed to contribute in a meaningful, safe way.
My next move is to write a letter to the care home company CEO as this needs to go higher than local managerial level. Reading your comment and others on this site, there is a lot of variation in what is being done to enable relatives' visits and variation in attitude. Hopefully input to care homes from higher up might jolt the CAN'T do care homes to action and the CAN do care homes to further action. Deterioration is totally predictable but is now becoming evident for all to see; I see it in my mother through Skype. People need reasons to live and relatives are a very important contributors towards this. We deserve to be recognised for this role and considered part of the 'team'.

The last time I saw my mother was on Friday 13th March and I spent that visit feeding her as I was not happy with how I found her the day before, hungry, thirsty and very stressed. She even screamed out which I had never heard before. The meal I fed her with was not good on this day but I supplemented it with highly nutritious food I know she likes.
I was due to visit a week ago when I got a call the day before saying I couldn't because of an abundance of caution and everyone was going to he kept in their rooms again! I had booked a taxi driver who kept the day free for me turning down other work; I booked this driver to protect the care home as I used to take public transport for the 13 mile trip. I have a respirator mask, gloves, goggles and a 'coverall'. The most important thing about this care home is the visitors DO NOT have to go into the care home at all! There is a path and gate that runs outside of the building to the garden; my mother loves the garden and even likes rain now. There is every risk of second class care for late stage dementia. My concern is management is getting accustomed to the absence of relatives and the CQC, who abandoned their post, which I contacted them about, and are now 'rushing' back in because care homes weren't applying infection control measures properly. The care home she is in, was brilliant but under new management it is now no longer so, becoming very corporate and institutional. I was moving her out of the home but was blocked from doing so, now I am blocked from seeing her. My mother is not a 'walking, talking' resident and I fear it is this group that is most vulnerable; on Skype I have seen agency staff not wearing masks with my mother and while they are very good with PPE now I wonder if she is still getting agency staff. There is no longer a staff list on the wing where she is; before I prided myself on knowing her carers. Soon I will have to leave England and it is quite likely I will never be with my mother in a 'meaningful way' again. Relatives are the third leg on a three legged stool; without them 'care becomes meaningless , warehousing'. Deaths in care homes are not just driven by COVID-19, they are also driven by abandonment, forced when relatives are blocked from visiting.

My father had started crying at 94 ... he tells me he is not long for this world and all he wants me to do is to take him for a little walk outside the care home in his wheelchair. We don’t have to talk to anyone.. we can both wear a mask, he doesn’t mix with anyone in the home anyway. It’s all just so heart-wrenching😟

Thank you for your reply to my comment. It is heart-wrenching but many care homes have taken a 'can't' do attitude. I am not sure what your care home surroundings are like but my mother's has its own garden accessible from the outside so relatives do not need to enter the care home itself. It was a nice sunny day when they cancelled my visit and she, like your father enjoys being outside in the garden. I think care home managers need to be taken to task about attitudes to relatives visits and to think creatively with a CAN do attitude as to how these can be managed safely. Our loved ones went through WW2 and their parents through WW1, they deserve a kind compassionate end of life. Relatives and their input need to be more highly valued and respected. We seem to have more ideas how to get our loved ones outside than the homes do.

I totally agree. His care home garden is huge with a side entrance... they now only allow one person ti visit so mum and i only had a quarter of an hour each. Asked if i could take dad out and they said they wouldnt allow it and would get a restraining order against me.... 😟