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.

Write to my MP
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This Is a national discrace. My mum died frightened and alone after going into a care home from hospital in march 2020. She spent exactly one year believing we had abandoned her. Eventually we were allowed in to see her at the end ( after much begging and arguing with the manager) but it was too late by then. She was too far gone. I am now looking into legal action.

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My mum went in to a nursing home in April 2020 after a 2 week stay in hospital &is still in the home. Mum does have dementia,when mum went into the home she could talk,walk, & eat independently,mum now doesn’t recognise me any more even though she saw me ever day,she repeats the same words,is so scared & anxious she won’t leave her room & lays on her bed all day.
she hasn’t seen any other family members since April 2020. Her personal care is non existent,she hasn’t had her haircut & is in desperate need of a chiropodist & her finger nails are filthy, I can’t even do them for her as I’m not allowed to go near her when I am allowed to visit.
I don’t know how long my Mental health can cope with this & now I might have to go against every thing mum didn’t want & worked hard for & sell her bungalow to pay for her care. She would be devastated to know it’s come to this, it’s so so sad.

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Its Bloomin hard I agree, similar happened to my mum but I cared for her for 4 years, I'm not 100% well myself so the idea to move mum into support didn't go as planned. I did consider having her live with me But the Nursing home won. It was the right idea for her needs. It has been soo hard not being able to see her but we had a 'house phone's installed in her room and she phones me when she needs support. Mainly when shes packing everyday to go home! But she doesn't remember the address!. It's going to be hard for you to come to terms with this change but It will work out for the Best, ( you have to take a leap of faith) remember shes being cared for and that's what matters most. X

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What a load of rubbish the government is hopeless they do not have anyone in care there are thousands of people all over the uk dying in these care homes because they are not seeing friends or family the care homes should be doing more it is not good enough we need to fight for our loved ones and not in the courts in front of our prime minister so he can do something about it you or I any of us should be looking for a way forward if schools open then so should homes if shops restaurants pubs hotels etc etc open then make the care homes open make sure you are well wear pep and visit our families lots of people don’t care I do and I intend to do something to see my aunt who is a 100 and her daughter is hard as rock does not care my friend and love of my life died her sons didn’t care I’ll with mnd but my daughter myself and 4 hours a day 5 days a week helped us sons did nothing now that’s it luckily she didn’t go in a home and was brilliant happy loved to sing she lasted 10 years went into hospital 1 night and 24 hours later she died from sepsis they said they did not know If at all possible do not let your loved ones go in a home keep them safe there are ways God Bless everyone xxx

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Before March 2020 lockdown I took my mother out all the time . We would spend hours going places in and out of the car. Going for Coffee or out for lunch we would go to the cinema the theatre , shopping , visit relatives . Staying with me at my home on my days off. All these things were done to help keep my mother connected with her life as it had been before she had gone into care. This was one way of making her stay in a carehome more acceptable. Now we have nothing. Not even garden or pod visits.anymore. Each time we see each other on FaceTime she regularly asks me am I coming to pick her up. I am sick of saying sorry I can’t. She has accepted and been so patient trusting that I will come as soon as I am allowed but there seems no clear hope of that dream happening anytime soon. I feel such despair and hopelessness for me and for her. She has quite advanced Alzheimer’s she knows who I am she is mobile & physically quite well her needs are not being fully met right now I fear that she will succumb to this illness as the daily drudge is all about waiting and looking at four walls. We do need to have meaningful time together we need #essentialfamilycarer status implemented ASAP. I want to care for my mother she wants me to care for her it is very simple. We want our freedom to love each other again in the way we always have. To walk out arm in arm in the fresh air together , I’m already grieving for the mum she used to be I don’t want to watch her plead to me to be near her I hate denying her that closeness that affection that reassuring cuddle. This separation is unbearable and unforgivable.

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My Nan was placed in a care home over Christmas for respite she was meant to be there for 6 weeks but ended up staying longer due to covid being in the home! I rung everyday to see how she was I was told everyday she was doing ok! Due to wifi problems no video calls are working at this time! As family member had briefly spoken to her I wasn’t to worried about it! Till Monday when I asked how she was to be told she hadn’t eaten for 9 days and I couldn’t speak to her as was in isolation for covid yet no one was told about any of this even when I was told she was doing ok! I turned up at the home on Monday about an hour after the call to find my Nan in bed in such a bad way she had no meat on her body her face looked sunken in! My poor nan died a few hours later! I do think it’s neglect on from the home! But something needs to be done people need to see there loved ones homes! It’s not fair on people with dementia

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This could be me . My mom went into a care home with Demencia 5 months ago she could walk with a stick and hold a conversation. Now she can’t walk doesn't talk and needs help eating how can someone go down hill so quick . She also doesn’t get the FaceTime calls I need to hold her and talk to her face to face . This is so so sad

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My husband has alzheimers disease and has been in a care home for just over 3 years. I cannot fault the care home. I do ring them to check he is ok, and they also ring me with updates. Throughout the covid times ( not full lockdown, but while restrictions are in place) , I have been able to have a 15 minute visit, be it through the conservatory window, but it better than not seeing him at all. As I work in a leisure facility, and its a close proximity job, when it was 1st said about limiting visits, I decided I didn't want to be the person taking the virus with me and passing it on, so explained this to the management at the carehome, who totally understood where I was coming from. We have kept in regular contact with the staff, checking to see he is ok. Despite being in hospital numerous times last year, with a 50/50 chance of coming out, each time he pulled through. He has been like a cat with 9 lives!! At no point either going into hospital or while there, has he caught Covid. I am so proud to say the carehome and hospital have been amazing with his treatment in and out od hospital. When he has come out of hospital, he has had to be isolated for 10 days each time, but they have made sure he is still cared for, being with him as much as they could throughout the awake times, having monitors in his room if it was unmanned so they could still make sure he was ok. I couldn't have asked for him to be cared for any better. In between lockdowns, I have had a couple of 15 min visits, through the conservatory window. Totally surprised to see that he still recognises me, trying to touch my hand and kiss me through the window. Its the best feeling ever to see his smile when he sees me. So having read so many disappointing stories here from relatives and loved ones about the awful way they have been treated by carehome staff, I am proud to say the staff are amazing, always giving 110% to looking after our loved ones, giving up time off, keeping them all safe. Its a hard job to do at beat of times, and in the times we are looking at now, their job is so much harder foe them to do. I take my hat off to all the staff at the carehome and the hospital in these challenging times.

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My son is in a nursing home - he went into a diabetic coma - resulting in a dementia. He is now 60 yrs old. He is in a nursing home with very elderly people.
I went three times a week to take him out to the shops & see his sister. His nursing home never took him outside anywhere. He looked forward to my visits . Now he stuck indoors in a unit with no outside space - he has become very distressed & lost a lot of weight.
When the first wave started in March 2020 I tried to get him out of the home to live with me - I was told it would be a lot of red tape to get him out & then the carehome got Covid so he didn’t come home.
We his parents are in our eighties & resigned our son would have to stay in the nursing home.
I’ve seen him on the times I was allowed to visit fir 20 mins once a week - in an outside pod with a plastic screen between us.
Every visit he asked us to take him out but gradually stopped asking & became quieter & now looks so unhappy & sad.
He has still not been vaccinated - his care home had the virus in April & have it in the home again.
I’m worried sick about my son but are not told anything - I think it’s a good nursing home but why must they be so secretive? I knew people in the home had died with Covid - but not told how many - I only found out by accident the home had Covid!
It’s a big home & they have Covid again but I not told if it’s anywhere near my son - I don’t know if he is in danger - it’s wrong ! He’s my son.
The residents have still not been vaccinated- I’m told they won’t be while there’s Covid in the home. It’s a big home with many departments - why can’t some of the residents be vaccinated?
My self & husband have been vaccinated now.
I’m told also his doctor will not go into the care home while it had Covid.
I have not seen his bedroom for nearly a year - seen what he needs - just to care for my son.
I can’t wait to hold my son - take him out in the fresh air - show him some normal life outside his prison!
It’s not really the care homes fault - it’s this terrible virus - my son would die if he caught Covid - But my son is so miserable & unhappy & I fear it will be many more months before care homes allowed visits inside their homes.

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I feel for you Teresa as l am sure most people do that have posted on hear .I hope you can see your son soon and take him out as you use to do Thats all we all want to see our loved ones smile again . I hope you can take comfort in knowing l feel your pain

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Being stopped from visiting our loved ones, is simply devastating. My Mum has Alzheimer’s and is in a care home. I agonised over leaving her there or giving up my job and moving her in with me, not only because of the visiting restrictions but the fear of her getting Covid-19.
I delayed in doing this because I stupidly thought things would get better with a vaccine in sight and also had to weigh up the financial implications having been widowed last year. She has been safe but 3 days before the vaccine day, she and other residents tested positive along with a staff member. I am absolutely devastated. Her fate was in someone else’s hands. I feel so guilty that I knew this was possible and didn’t protect her. Although she is receiving all the treatment she would get in hospital ( other than a respirator which she would not want) the doctors have said she will not recover from this and you have to think about where she would be most comfortable. These are times nightmares are made of and I feel for each and every person not being able to see their relatives in what are probably their final years/months/days. It’s heartbreaking for all. This is going to cause life long distress and the Government need to know this. Sending love to each and every person right now being denied so much. X

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I have the same with my mother we all miss her so much, isn’t there enough pain in the world without our loved ones feeling there on there own. The possibility of my losing my mum is killing me. I just want to be close to her we are her family not drs or nurses. We should have the right to be with them at home. Family is what they wish for.
Us too. I want my mum back home 😢😢😢😢😢😢😢

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How do you get out of the never ending spiral that says a home has to be free of any possitive covid test for 28 days the home my mum is in is constantly telling us some one else has had a positive test back and another 28 days are added they have done the same again todaywhich was the last day of the 28 so now we start again and we cant go any where near the home also it means my 92 year old mum cant have her 1st vaccine either this could go on for ever is this happening to any one else.

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Yes. Still not been able to see my Dad. Earliest date now 7th April provided no more positive tests. The 28 days needs changing. What is the rationale for this? If a whole household had covid they would be allowed back to work & school after 10 days!

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My dad is 92 and went into a care home in March 2020 the before lockdown. At first we could visit but now we can't. My father had a fall a couple of weeks ago and was in hospitail. No visitors. He came back to care home and had to isolate in his room for another two weeks spending Xmas day alone in his room. He is depressed I am depressed as can't see him. Something has to be done and quick. We should be making memories with our elderly parents. Not locked away.

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My mom first went into a care home in July 2019 . I thought I’d chosen the right one after looking at several . My mom had always had a lovely home so my sister and I wanted the best for her. We sold her bungalow and that’s what’s been paying for her care.
She was in the care home until she had a couple of falls the first apparently causing a bleed to the brain. She was never taken to hospital and because it was lockdown was not allowed any contact with either myself or my sister Each time we rang she wasn’t able to talk to us and we were told that she was very confused probably because she’d got concussion. Still they didn’t get her any medical help. About 9 days after the first fall I received a phone saying she’d had another fall I’d tried to speak to her only about 40mins previous but she seemed totally out of it. This time the paramedics were called and when we asked if we could go to the hospital with her they refused because of “COVID” They didn’t take her in that night but one of the carers said he was concerned about her and rang the paramedics the next day. Again we weren’t allowed to go with her. That afternoon I received a phone call from the hospital saying that mom was unresponsive and probably wouldn’t pull through. I was devastated and rang my sister who had been waiting outside of the hospital for the last 2hours again being refused entry.
We still never got to see her and she was in hospital for 3 weeks . We rang every other day sometimes it took up to 8 hours before we could get through . The nurses on the ward were rude ,lacked any kind of compassion and gave us no information at all.
After the three weeks they said they were discharging her. We didn’t want to put her back in the original care home because of the dreadful care. We decided to see if they had a place in the nursing home where my sisters mother-in- law was.
She was given a place at an astronomical price but we were desperate to get her away from the other home so we agreed. The manager seemed really compassionate and couldn’t do enough for us until she got there . He said if we turned up on the car park when she came from hospital we could see her no contact but at least we could see her. She seemed like she recognised us , she was in a wheelchair unbelievably thin and virtually unrecognisable. , but we were just grateful to be able to see her. After that she had to isolate and there was no form of contact because she couldn’t really talk. On December 11th I received a call from “ continuing health care “ they said mom had rapidly deteriorated and she was being fast tracked. They said from that day they would be paying for her care., because she was end of life.
We tried to get in touch with the manager by email on lots of occasions so that we could visit. He chose to ignore us for days and then agreed to a visit on Christmas Eve. We were elated,
However we still carried on paying which apparently was an administrative error. We were given a second visit on Tuesday 5th Jan but was told we probably couldn’t go again because of the restrictions. We said we should be allowed because of the fact that she was end if life. That same afternoon my sister received a call from the owner of homes wife who dealt with all the administrative side . She said we needed to pay a top up alongside the continuing healthcare payment of basically £400 a week. We agreed , but then the next day I received a call from continuing healthcare to arrange another assessment visit for my mom . She was horrified when I told her about the top up and said you shouldn’t have to pay anything. This is where we’re at now , the administrative person( owners wife) wouldn’t answer the phone. Tonight the actual owner has rang my sister and was really awful no compassion and in a nutshell you either pay or take her somewhere else. We have never tried to get out of paying for her care but was told that legally we shouldn’t be doing so anyway. My sister was so upset because she didn’t expect the lack of empathy and compassion he showed . And as we expected he won’t let us see her anymore.
We’re just devastated and don’t know what to do.
Whatever we do won’t help my mom because I don’t think she’ll be here much longer but if we can stop other people going through this it’ll be worth it

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So sorry to hear about the appalling treatment from the home. You never know how good/bad it is until you experience it day to day. All the CQC reports don't go into enough depth about the important things like treatment of relatives, communication and problem-solving. We got my mum out of such a place and landed on our feet with a brilliant nursing home. Now it's my dad that needs respite to assess his needs, and I genuinely believe in January 2021 the hard and fast rules around no test no admission (dad has refused tests) means his needs are being delayed when there is no time to lose.

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My Mum has dementia and is in a Care Home which at 5pm last night cancelled all visits to residents for the foreseeable future, despite having a Covid Safe Visiting Pod. Apparently this is because Public Health England have arbitrarily decided that Care Home visits constitute non-essential journeys. If they pretended that my Mum was 9 instead of 93 perhaps some consideration for her mental health might b shown. We have already been deprived of spending what could well be her last Christmas with her and had a visit booked for her Birthday on 6th February. Now we may well miss what could be her last birthday as well.

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I hated reading this. So painful for you. My mums nursing home initially shut to all visits.
The government guidance clearly states visits should go ahead thro a screen or pod. Very clear in the guidance. It’s not great is it ? I cannot soothe or connect with mum via a screen pod but it is better than Skype calls.
Please do challenge this with the home as it seems to me they are very defenitely mis interpreting guidance.

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I am horrified by these stories and have two parents one with Alzheimer’s one with vascular dementia in two different hospitals. Where has the right to familial contact gone? My mother, father and myself have all been vaccinated and my mother is post Covid. She has been searching for me since she was admitted on section last November. A carer who came in to allow me to sleep, had no English and terrified my mother. She asked the carers to leave and got upset snd frustrated. She tried to hold on to my father who was frail after a stroke. Since being sectioned last Autumn we have only seen her once she is pacing and misidentifying me: it’s desperate. I
have been told I am not allowed in to see her even though her distress is caused by not seeing me....

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My dad who had Alzheimer’s Dementia was taken into hospital on the 13th September 2020 with a chest infection.My dad was in hospital for 6 wks my brother got to visit for a week then the visiting stopped.My dad was then transferred from hospital to a rehabilitation centre with no visiting,dad had to isolate for 14 days 2days before the finish of his isolation my dad tested positive for covid which they said he must have caught while in hospital I was horrified he is 85 yrs old but luckily he showed no symptoms so that was another 14 days isolating in a small room and unfamiliar surroundings.Then dad got C-diff which they also said he must have got while in hospital he lost 2 and a half stone in 3wks we got face time each day it was totally heartbreaking sometimes he was very sleepy and other times they said signal was not working well.My dad was in this rehabilitation centre where we saw no improvement in his mobility or eating he was there for 4weeks and 4days and suddenly passed away on the 28th of December we are all totally heartbroken,We are a very close family and I just can’t come to terms with his loss I can’t stop thinking about him in that room no visitors and don’t even know if he was in any pain.I am so angry that they are treated like this it it just a heartbreaking situation and you don’t know what is going through their minds, not seeing their loved ones and thinking that we don’t care about them.Then you have them resting at the funeral homes with closed coffins not being able to put in clothes for them and not being able to say goodbye and we have to live with these restrictions for the rest of our lives😪😪😪😪

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Hello Loraine,

We are so sorry to learn about the devastating loss you're dealing with. This must be an incredibly difficult time for you.

Please call our Dementia Connect support line on 0333 150 3456 if you need any emotional support. Our dementia advisers are here to listen 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, Loraine.

Alzheimer's Society blog team

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My mum had a fall 3 weeks ago and fractured her ankle. She has mild dementia after having a number of strokes over the passed years. She's been moved from hospital to another hospital and now a care home. I had no choice of where she was going and was unable to see her Christmas day! I have had a few phone calls with her, and she cries! It is breaking my heart. They've put her in an up stairs room for a two weeks isolation, even though she had a test and it was Negative. We've asked if we can see her through a window and they have declined. She's so unhappy and is losing the will to live.😔

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I had the jab. I had the swab nose a nd throat wore a mask, and was still refused entry past a screen. What a farce. Mypoor wife has demecia and is confused I cannot go in. That was before the grade 4 came in.

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