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

225 comments

I work for the ambulance service
I visit care homes every day but am only allowed 30 minutes per week to see my terminally ill mum who up until 5 weeks ago lived with me. I have seen her once. If I was to take a patient to the home from hospital I would be allowed in but not to see my own mother. I am a front line worker so do not understand these inhuman rules. I'm so angry that something so barbaric is being allowed to continue. Change is needed. It's quite easy to visit as long as all safety measures are in place.

I HAVE NOT BEEN IN TO SEE MY MUM SINCE MARCH
I HAVE JUST BEEN TOLD I CAN NOT EVEN TALK TO HER THROUGH THE WINDOW ?
IM SO UPSET THAT CARERS GO IN AND OUT
NO MASK
BEEN ABLE TO TOUCH MY MUM . They
KISS AND HUG HER NO MASK OR GOWNES
IM HER DAUGHTER I CAN NOT GO NEAR HER AT ALL .

One carer went in and took her sister in
It’s killing me

Can I ask why you are no longer allowed window visits?

Hi me again
Time after time,post after post the same heartbreaking cruelty. Paula you asked why can't we do window visits. That is a good question, care homes just say Government guidelines. There is no consistency we all post our FRUSTRATION and HEARTBREAK to like minded people. Sadly this won't change anything so we need that petition and we need to be heard NOW. xx

my heart breaks for you all as i am also having the same problem as you ive also ended up on antidepressants as i couldn't cope not seeing and hugging my mother i agree with every single one of you, bless you all at this awful time

i have also observed this happening in my mothers home
its torture to see this when we cant even see our mother through a window TWO STOREYS UP they point blank refused to bring her to her window how can they be so inhumane ?

Dear Janet,
I can totally understand how upsetting this must be. As you may have seen in the replies above, I'm looking to speak to people about this for a piece I'm writing in The Times. Grateful if you could get in touch. I'm on 07824311766. Thank you, Lucy Bannerman

My Dad is in a care home & although he's being care for myself or my mum & sister can't go & see him let alone give hi. A hug & kiss, he has Alzheimer's & need contact with us he must think we have abandoned him, it's so upsetting. Is this the Law that we can't see him can they really stop us from seeing him & giving him a hug which is very much needed. As much as I am sad I'm very angry about the hole thing !!!!

Hi
yes utterly disgusting criminals in prison get more human rights. Than our loved ones who was unfortunate enough to get old.
My mum has dementia and I haven't even been allowed to have a window visit in months. I have emailed Andy Carter to ask if he can explain the crazy reasoning behind this. It is totally inhumane. My mum has deteriorated I am fighting to remove her so she can live with me. We MUST all fight this together otherwise we will never be able to hug,cuddle or kiss our nearest and dearest again.

So sorry to hear about your situation - can I ask why you have to fight for her to leave the home?

Hi Paula
As my mum is in a care home they have to have dolls which is put in to protect and keep them safe. Social workers have to be involved to do further assessments and consulta
tions. It's not easy and certainly not straight forward to remove anyone from a care home.Thanks for asking and caring.
Kind regards
Christine

Hi Christine, I heard the end of your interview on Radio 4 today and had to do a catch up online from the beginning. My heart goes out to you, your family and all those affected by these seemingly draconian measures which isolate families from their loved ones. I know that what I and others say or write, cannot in any way compensate for a simple hug from those who are distanced from us and I can only ask that you (all) remain strong for those family members. My mum has a diagnosis of dementia and as her carer I speak from a position of experience of dealing with a person with dementia. If you are able to look after your mum why won't the authorities allow you to do so ? I think you are amazing for sharing your awful situation on the radio. In your particular case I believe that there is only one solution that will give you peace and happiness and I hope that you will achieve it. Love and best wishes for you all. Stephen

Hi Stephen
Thankyou so much for your lovely email,like many people I do stay positive we must. But this inhumane attitude to all of us is disgusting. As you're aware i've had part of my story told in The Times to which I am very grateful to Lucy, I was also contacted by The Daily mail who I sent information to and they didn't publish as promised. I have news for all of you and please,please spread the word we are being listened to. I have been contacted by ITV and they are filming me next Monday 16th near my mum's care home and it'll hopefully be aired Monday evening. I live in Warrington and I don't mind being the spokesperson for all of our causes. We MUST stick together then we WILL CONQUER. Noisy,aggressive protest's do no good but the masses of people DO get heard. I work for myself so time off is money. But it's something that i'm passionate about for us all to be reunited with our lived ones NOW. So who is with me ? We must PERSIST we WON'T go away. Please,Please support me to help everyone who is in the same boat as each and everyone of us. Please stay strong 💪💪 TOGETHER we WILL move mountains. Thankyou for reading this and I look forward to hearing from all of you xx

There is an even more disturbing thing happening now - care homes are refusing to even let residents go to a window to see their family standing outside in the car park. This has happened to me last week when I asked them to take my mother into the lounge where she could wave to me standing 20 yards OUTSIDE in the car park. Unbelievable. Residents were already sitting at the window and they even waved to me but the manager said he could not take people to the window to wave at families outside. I have now started a Human Rights abuse case as this is clearly not part of preventative virus procedures. has anyone else experienced this utter craziness?

That is blatant control. None of it makes sense. I have just posted saying they let a hairdresser in my mums home last week yet we aren't allowed no where near. I have written to my MP. I have had enough!

Dear Lynne,
I'm replying here in the hope you might see this, in time for my deadline later today. [Thurs 5 Nov]. I'm a journalist at The Times and would like to publicise these issues. Could you (and anyone else who is in a similar position) please get in touch?
I'm on 07824311766. Thank you,
Lucy Bannerman, The Times

My mum is in a carehome and caught coronavirus from staff. She was very unwell so they let me in. I slept in her room, nursed her round the clock, gave her sips of fluids every 10 mins, gave her my love. She picked up and was whisked away from me again. Now not allowed to see her. Inhumane. Taking her out, need lot of support so looking into what were entitled to.

I am having the same issue. My loved one has alziemers and I have not been allowed any contact other than video since March. I requested window visits but was declined. I'm not allowed to stand on the public pavement and wave from afar. I'm disgusted and upset. Its likely that without regularly contact my loved one will feel abandoned and alone. Please help and share any advice on what I could do? I'm devastated. Thank you

HI Jody, my advice is to persist, our area went into local lockdown months back and now national lockdown but we still go to visit dad, yes we received calls from management saying you can't go to the window anymore etc but thankfully they responded to our pleas. It is not against the law to go in national lockdown to provide essential care to a relative and as far as we are concerned those window visits are absolutely essential. Also the home are required to provide an alternative to actual visiting and if video calls are no good, window visits should be the replacement.

Hi I just read your article, I have the same problem, I'm not even aloud to see my nan at the window. She is slipping away. How do I start a human rights case please from Laura

Make a referral for safeguard to social services ! Finally 11 weeks of no window visits and for reasons unknown ( may be restrictions lifted!!!) investigation has began and I’ve signalled intent of bringing her home ! 🙏

My partner is 55 with early onset dementia he went into a care home for assessment in February as at the time I was caring for my dying mother and couldn't do both. The decline in him is terrible hes lost weight and can sometimes hardly hold a conversation especially on a phone which now is my only way of communicating with him. I was allowed visits for about 6 weeks but they have stopped again. The guilt and heartbreak is affecting me so much in fact I'm thinking about bringing him home as hes with people old enough to be his parents and theres no stimulation there for him at least when I visited I could talk to him about things he likes and understood. Though as we are not married I'm often told I have no rights

These stories are heartbreaking and incredulous. Please send copies of your letters to the Government, Opposition, local MP and Breakfast News. This inhumane situation is not getting enough coverage or leverage.

All I'm going to say is I've read all your sad heartbreaking comments and feel for everyone of you I have a mum in care home with Vascular dementia and Alzheimer's everyone your comments has same contents of how I feel and has been said so I won't repeat. Love to you all stay and be strong for yourselves and your family's parents that are in care. Government need to take note and stock and get grip and act now something drastic constructive needs to be done for these elderly, frail and vulnerable sad and lonely on their own with no love, hugs and kisses be from family's who have supported worked kept country running taxes hardwork this how government repay you shame on you. Listen hear how family's feel you government all got parents show some empathy and respect you only get one mum and dad blood tie xxxx

Please can someone share any thoughts on this ... my father passed away in April in a care home. My mother is still in the care home and we are only allowed to visit in the garden for 20mins. Unfortunately my mums health does not allow her to be outdoors this weather. Tonight the care home have appealed for volunteers to go into the home and help. I can’t go in as a daughter but volunteers can!!! The criteria is you have to do a minimum of 8 hours... I work full time and have done all through the pandemic ordering supplies and medication to the NHS so I’m unable to commit to 8 hours as I often take over time to help with the workload. Does anyone else feel this is so unfair?
Please let families into care homes to be with their loved ones. My father had Dementia and died in a room alone, I don’t think as a family we will ever get over this

So sad reading all these comments,strangers being allowed to volunteer but family not. Who do these dictators think they are. This is not right at all dementia takes so much. However, the way we've all been treated by the government is worse.
We MUST act now please,please,please lets fight for OUR right and OUR loved ones right. We are their voice and we must speak up.
Is everyone just going to be silent, if not come on lets get our voices heard.

Have sat pondering, yet again, about this appalling no visiting rule. It' s with me 24 hours a day. Not seen my husband since last garden visit of 45 minutes in early September. I worry about his health as he suffers from constant urine infections which aren't picked up by some of the less experienced care staff. Unfortunately, he can become aggressive during these times and I am concerned they may decide he has to go. Communications between Home and relatives are poor. I spent all of Saturday just trying to get through. Phone just rang and rang. I am in despair as, apart from here, I feel I have no-where to turn and although I have written to all and sundry, no-one responds. Whoever made the dragonian decisions re Care Homes needs to be brought to task.

Hello Valerie,
Thanks for getting in touch. We are so sorry to hear about the difficult time you're going through right now.
Please know that you can speak with a dementia adviser who will listen to your situation and provide you with advice and support. You can call our Dementia Connect support line on 0333 150 3456. Learn more about telephone support: https://www.alzheimers.org.uk/dementia-connect-support-line
We also have a popular our online community, Talking Point, where you can speak with other people affected by dementia, such as family members and loved ones, who may be able to provide you with peer support if they're going through a similar experience: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps for now.
-
Alzheimer's Society blog team

I'm in the same situation as most of these people and it's wrong and heartbreaking for all of us more has got to be done.Cant we all get together and send a petition to Boris sure millions of people will sign it they are pensioners not prisoners

My mum is in a care home which locked down mid-September and now I've been told that they are closed to visitors until November at the earliest. I feel devastated that I'm letting her down so badly. Surely this must be a violation of her human right to family life?

I have recently had to put my 91 year old mum into a home as we could no longer manager her. We was told we would be able to see her once a week but that has now changed and no visits allowed.
It was the governments fault that there were so many deaths in care homes in the beginning, sending people from hospital without test to care homes.
Now we are being punished for this. Surrey the care homes make enough money to set up certain areas for visiting, what about Our loved ones human rights ?

It wasn't the government who sent elderly ppl to carehomes after testing positive, it was the hospital staff, they made the decisions. Yes carehomes should be funding sustainable visiting areas, but they aren't. Families need to make a stand instead of going along with all this BS.

My mum has been into 3 hospital and then a care home since April. April was the last time I saw or spoke to her. Due to Covid, I was not allowed into the hospitals and they did not have the ability to Skype. A few weeks ago mum finally moved into her care home, we were still not allowed to see her, but they were planning on a Skype call but was waiting for her to settle in. Unfortunately non of this happened and sadly, yesterday my mum passed away. It was sudden and unexpected so we were not called. My mum You could say. died alone, she had not seen any of her family since April. I do not know if she knew who I was still, or if she remembered her grandchildren. I never thought that in April when she was taken away by ambulance that would be the last time I saw her. I am truly heart broken.

Hi Amy. My heart goes out to you. I can't imagine your pain and anguish. Please find time for yourself to allow all of the feelings, hurts and heartbreak to surface. I pray that in the following weeks, days, months and years these will increasingly fade and you will be filled with the fondest memories of your dear mum. As someone with a loved one who has gone from a fall, to hospital, to a nursing home, your story is all the more poignant. Thinking of you

Thank you for your kind words.

god bless you my heart breaks for you x

My mother is in a nursing home in Swansea which is brilliant! She is receiving NHS CHC due to the severity of her condition. She has early onset Alzheimer’s and was diagnosed about 10 years ago in her 50’s. I have only seen my mum through a window twice in 7 months due to the restrictions. The home decided to recently open up to outdoor visits (15 min slots and 2 relatives at a time), however due to the weather their gazebo collapsed and visits were postponed due To the lack of shelter. This was really upsetting however I could appreciate that the home were in process of trying to resolve the Situation. Unfortunately, as soon as the new gazebo was in place, they then closed the home down to all visits again, prior to the New government Restrictions, in a bid to stay a step ahead. I can appreciate that this was to proactively stay on top of their safety regulations for the residents, which I also am so grateful for as they are doing a great job of protecting the patients. Yet, I can’t help but feel totally devastated that I can’t hold my mum’s hand or hug her or even see her. Her Alzheimer’s is so advanced and she is very unwell, needing round the clock care. She hasn’t recognised any of her family or loved ones for years now and has lost all ability to communicate verbally. We regularly Skype, however, as mum’s condition is so poor she is unable to understand, respond or benefit from the calls. My mum needs constant tactile interaction that is sensory. This is what she thrives on and can only respond to. I don’t know how long mum has got left to live. 7 months have gone by already and all this time is precious for her. Due to mum’s early onset Alzheimer’s, she has a young family who miss her dearly. My dad is unable to see his wife, which is totally heartbreaking. I myself am currently expecting a baby that mum
May never see. I know she won’t be able to understand or know that the baby is her grandchild, but I know she would thrive emotionally and mentally from that hug and connection.I really wish that the government would provide care homes with additional guidance or rules so that visits could be made possible. Even if we had to dress in full PPE and make sure we self isolate before hand to ensure we are safe to enter. Surely something can be done! To simply say that care homes need to be shut to protect the residents doesn’t take the fact into account that it could actually be more damaging to those individuals in the long run.

Dear Sarah, I'm so sorry - it's heartbreaking to read how many people are in this kind of situation. I'm writing a piece for The Times, highlighting relatives' concerns. Would you like to contribute? Please get in touch on 07824311766 or [email protected]
Thank you, Lucy Bannerman, journalist, The Times

Reading all these stories of families like mine that are going through what we are makes me feel not so alone.
My dad 70 Who has dementia was in respite care at the beginning of the covid and now is in a nursing home long term, it’s been heartbreaking to get my head round it all, and not being able to see him Or take him out or to settle him into his new home has been heartbreaking and has made me depressed.
I was able to visit him once outside on the garden , now even garden visits have been cancelled. Due to the numbers rising again.
It’s not been good for dads mental health and Is heartbreaking when your dad tells you over the phone that he wants to kill himself.
I just can’t get my head round the fact that the Carers who work in these homes can be with their families go to pubs etc and quite easily pass the virus on to our families who they care for , but I,m not able to even visit dad on the garden wearing full PPE.
Something definitely has to change and soon or otherwise a lot of people will still be suffering mentally.
The Carers are all doing a fantastic job , but we all need to see our families that are in care homes now . Something needs to be done.

I feel for you all. I havent seen my Mum for 6 months.(Who has advanced dementia) When lockdown was first announced I offered to volunteer at my Mums home, either as a carer as I have experience or offering free yoga classes.This was turned out.My mums in a large care home which I feel has disadvantages with 80 residents and 50plus staff they have had numerous outbreaks. I recieved a letter as did everyone who had family in the home ,at the beginning of the outbreak saying please dont keep contacting us as we are very busy but we will tell you if anything changes..I respected this so when I could see people allowed to visit there family in the care homes be it by window or garden,I respected the homes letter so didnt call. Then as I am in Manchester we had a local lock down ...When I spoke to the home I was told that I cant go to the home at the moment..Basically I was never offered a window or garden visit.Since then 2 staff have now tested positive and I wonder if I will ever see my mum again.I have spoke to her via Skype but she just doesn't understand..I even wrote to the home and offered to care for any residents that did test positive.As thinking of anyone left alone and confused in there room was very upsetting to me. I try not to get angry about this situation but it's very hard and I do get very upset at times to.
I have wrote again to the home to make sure if there ever is a window to visit my mum that I dont slip through the net again, as missing that opportunity through what I feel should have been offered in a way that was fair to all residents families. Sending you all much love at this time.Mandy Manchester

Myself and my family are in the same position we haven’t seen my mom for 7 months now she as Lewey Body dementia is now only 5st 5lb can barely talk can’t walk as no facial expression and doesn’t recognise any of her family
She was assessed just over a week ago and the medical team who assessed her feel she is end of life yet still we aren’t allowed to see her unless a doctor says yes we can enter the home. How can this be right to deny her family the right to see a loved one we have always been a close family and this is tearing us apart we just want to see her even if it’s a short visit we would be willing to wear all the Protective Gear why can’t we just have 10 mins with her otherwise we might not see her at all

I agree completely. My Dad is in a care home and I haven't been able to see him for many weeks, as we had a spike in covid cases locally and care homes closed to visitors.
We have tried phone calls and skype but this just upsets him even more.
The home have said that they may be able to do visits through glass soon, but I fear this will confuse him even more.
I am scared that he won't recognise anyone in the family when we are finally allowed to see him. It is so sad for both the families and the dementia sufferers.