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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220 comments

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My mum has had to go into respite care and had Alzheimer's. I had to leave her at the door and was not able to settle her in or see her room. I was heartbroken and still unable to sit in her room with her. I get a half hour time slot with no touching aloud

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I fully understand what everyone is going through. Mum is at early stages but over the last 12 months, being alone in her room with little contact with others has meant her condition is deteriorating. We call her daily but she isn't keen on phones so our calls last only 2 mins. She isn't good with technology so we can't video call her. The government mentions people's wellbeing but when I asked about taking Mum to the hairdresser - this was refused straight away. My hairdresser even offered to go to the home to do her hair - which is very long now - and again this was refused. Why is it that we (healthy people) can go out and about - to pubs, restaurants and even to cinemas when I can't take Mum for a haircut!! Surely her mental health and wellbeing is also important! Frustrated does not quite cut it.

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Like all on here I too am heartbroken and frustrated. Following a horrific fall my Dad ended up in Hospital for 3 months, confused, on deaths door, broken neck, and now seems to have Dimentia although not diagnosed yet. He was transferred to a care home. I doubt he will be coming home as my Mum has gone down hill rapidly and I am sure she too now has dimentia but again not diagnosed yet. The care homes are making up their on rules on top of the ridiculous, cruel government guidance. I have written to my MP who offered to contact the care home! I declined this offer as scared it could make things harder for my Dad or us. Instead I have asked him to take this up at Parliament. Keep fighting everyone! Keep writing to government, your MPs and complain to the owners of the care home if you feel comfortable with that. Life is and always has been a balance between quality of life and risks. We all get in our cars and take risks without thinking about them. More people are being affected and die because of these restrictions than of any single virus. The elderly and confused are being hit hard.
I would also like to add that any care home (like the one my Dad is in) that enforces supervised visits only should be shut down. This directly removes the safe environment in which a resident suffering abuse in the care home can speak out. The booking in advance, technology around testing required and half hr visits are impossible to navigate for a lot of elderly loved ones wishing to visit. The whole set up is against human rights.

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Why can't we visit in my mother's room she gets frightened when they bring her to see me in the dinning room it will be better for my mam and myself my mam room is the first room I do not have to go past any other room to access her room

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We have same heartbreaking issue, my mum is brought down 2 floors and along a corridor she does not know and room she is unfamiliar with, which causes anxiety, this week she was too tired at allotted 30 min slot so staff cancelled visit as we are not allowed to see her in her room

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I totally agree , I asked last night if we could sit in my dads room , the girl said no . But e sit in a eat room where everyone is going to eat ,

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There should be no reason why we cannot visit our relatives in their rooms wearing PPE if all involved are vaccinated. No different than going to the Supermarket! Actually more controlled and Safer! Covid suits the care homes keeps the relatives out! God knows what is going on with these poor vulnerable residents during Covid! My Mum has definitely deteriorated and having Dementia cannot tell me how she is being treated! Spends most of her time in her room! Definitely losing weight and sad! Only allowed 30 mins visits when you can get an appointment! not helping as receiving very little stimulation!
Care home owners getting richer with even less effort! Cash homes not Care Homes! Our poor elderly dying alone! Disgraceful!!!!!

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My mother has just been admitted after my sisters who live near her felt unable to support her and keep her safe. It was planned but its now so awful not being able to visit freely and often (I live UK, she's in Ireland). I'm heartbroken.

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I have not seen my Mom for 14 months. Every time new legislation appears to allow visits the care home moves the goal posts. At present, my mom will not leave her room to see her children in some 'designated area', which conjures up some sort of prison visit. I have asked to seem my mom in her own room, that she is paying for. But no. Apparently it is up to the discretion of the Manager. My Mother has Alzheimer's and does not understand, why, we cannot visits her in her room. I am sorry to say, that after 14 months of seeing my Mother through a window, two words come to mind about this particular care home's policies and practices: Perverse and Sadistic.

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My mum went in a care home in February 2020 after a fall, before she could go home covid arrived and social services recommended she stay there, temporarily. She had previously been diagnosed with early dementia. By September, when I could visit, I saw a huge difference and it was decided, along with mum, that she needed to stay there. Now, the home make their own rules up, we could only start visiting last week. I need a test before going in and a mask, which is fine, but I also have to wear a visor, so mum can't see my face properly. Additionally, we have to stay behind the glass screen, so no hand holding and mum can't really have a proper conversation as she can't hear me through the mask, visor and screen. Yet, two weeks ago I was asked to take her to hospital for appointment, I only wore a mask but they said test not needed! I obviously did my own test. I currently can't visit my brother in his home, but the care home said we can both go together to visit mum and sit next to each other inside. I said I'll be taking her to my house next week to sit in garden, but they said she'd only be able to go out in walking distance of the home, not in a car, and not yet anyway. They then said the easier it gets out there the harder we'll make it for visiting! The 'rules' are all mixed up. Boris says one thing, I cheer, the home then does another, I groan. Its as though she's in prison. She even said that she'd rather see us and risk getting covid, as she probably won't be around much longer! Its heart breaking.

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My dad has dementia and after 3 week stay in hospital he had to go into a care home for a 6 week Emmergency assessment.
My parents have been together almost 60 years and never been apart. I can’t even begin to imagine how my mum is feeling right now because even though dad has come from a hospital with regular Covid testing, always negative, as well as both parents having had their 2nd Covid vaccines, dad still has to self isolate for 14 days. Mum isn’t allowed to visit him, she is heartbroken and hasn’t stopped crying, Mum always tried to make sure dad had shaved and clean had clean clothes everyday. This rule has been so barbaric and while I do understand people have lost their lives and loved ones due to Covid I don’t believe that our vulnerable adults have been given a second thought, Mam worries dad forgets her completely, it would seem like she is going through a grieving process and that is so unfair, I feel I need to complain but not sure who I need to contact, so if anyone can give me some advice it would be much appreciated

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I agree that this has gone on for long enough. I am allowed a 30 minute visit once a week in a designated room as my mother's designated visitor. What is holding up care homes being opened properly. They have all had two vaccines, I have had two vaccines and as a key worker am tested twice a week. My mother has vascular dementia and I can see her disappearing before my eyes. She is frustrated and desperately needs to see family more often.

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My mum has now been in a care gone for 2 years since March 2020 we have barely seen her. We are only allowed a single visit each week for the last 5 weeks and when I went last week she had forgotten me. She did not know who I was. She has forgotten her grandchildren and gt grandchildren who were her life. They have only just built a booth and even then will only allow 1 person a week in and no children and this is behind a window!! It’s ridiculous and a breach of her human rights. I have never seen my mum look in such a state her gaur is long and straggly, the only thing that helps us get through this is that because of the dementia she doesn’t realise. It is also the case for me that this was the last thing my mum ever wanted and I too had to sell her flat to pay forher care. It is heartbreaking for us. I bee Ed lives the homes are terrified of being sued and the poor residents and their families are suffering for it. Strangely last November my mum had a hospital appointment and they were quite happy to let ME take her!!! As they couldn’t spare anyone. It makes no sense. Lift these ridiculous restrictions soon please it is affecting our mental health and I feel so guilty !

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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.
I FEEL SO GUILTY......

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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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It’s absolutely disgusting.. im so sorry you are going through this I’m so scared to read these things as I’m fighting to get my mum home , after been put in one for respite .. she’s already distressed and then been put in isolation for two weeks and facing two more weeks in somewhere she doesn’t want to be .. I’ve seen the decline in two weeks , it sickens me to the stomach the place she is in .. an independent lady having to sit in what can only be described as a waiting room .. this is no quality of life for anyone . The system stinks and they are just been overlooked like their lives don't matter . She has been happy and safe from Covid for the last year done everything she was asked to do .. then locked up like some prisoner I don’t feel comfortable having her in these places at all .

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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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