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

My mum died on Friday after spending 2 years in a care home and suffering with vascular dementia for 8 years. We haven’t been able to be near her since lockdown started, the last time we were able to take her out was on her 81st birthday in February. My dad who has been married to her since 1964 and normally would collect her in the afternoon and have tea with her at the home they lived together for 54years and hasn’t been able to do so since March, which personally I think is wrong. Every day he stood outside the care home for 5 minutes to say hello to her from 2 metres distance, she was upset and crying and couldn’t understand why suddenly she wasn’t allowed out with him. I’m sure something could have been done to allow safe visits to care homes for loved ones who are nearing the end of their lives. It’s caused the whole family distress. I have to say though that the carers who looked after my mum did a fantastic job over the past 2 years, they need more recognition for the great work they do.

my mum and auntie are together everyday in their dementia carehome. They have been on lockdown since 13th march and now we have been told we can have 1 to 1 30 min visits from 3rd aug but you have to book in and see if tbere is a slot available. There is not 2 slots together which mesns cant even wait for 2nd visit, surely if they are together all day and we always take them out or visit them 0together, why arre we being told we hzve to have seperate appt for each of them?

My Mum has been in a care home for the last 2 years over that time I (her daughter) visited or took her out most days which kept a relationship going and she knew who I was. Since lockdown that has now gone and to only have 30 mins in the garden (weather permitting) with her twice a week is just not enough to maybe bring something back between us, it is really heart breaking. I know the staff do not stay at the home and come and go as they need to. I would like to understand why they can do this and not family members especially as I am sure we would be willing to take the same measures as they do. The owners of the home are away in Spain at the moment will they isolate them selves when they come back before they enter the home? If they do not that really makes a mockery of the lockdown measures and who is going to check.
I feel we have no where to go to let them know how important it is for dementia patience’s to get the contact with family members. It’s very frustrating, heart breaking and upsetting however through all of this the team at the care home have been amazing, but they are not family.

I do not understand why my mother in law can only be visited by my wife for 30 minutes a week. If we had a bigger family she could see more people in a week, as the home is saying that my mother can have multiple visits for 30 minutes, but the individual can see them only once in a week. My wife used to go every day, and this home has been under special measures, but she can only go once a week now and as there are no other close family members her mother only gets the one visit! is this normal?

My mother is 96 and in a care home and myself and my two daughters always telephone her every day. Since lockdown she has been unable to hear us on her amplified telephone and needs to have her 6 monthly clearance of her ears at the hospital. I have made an appointment for August but have been told that the home will be unable to take her and that I am out able to take her . If I am able to arrange hospital transport and she goes for treatment, she will be self isolating for 14 days on her return to the home. Without this treatment, she cannot hear so our attempted Skype calls have been to wave at each other and garden visits have been emotional as my mother cannot understand why I am not allowed to go near her. She may have been one of the fortunate ones to avoid Covid in the home but effects have not escaped her. She was afraid to go out of her room after restrictions of self isolation were eased and now cannot hear or understand her carers and cannot read their lips because of masks. There is no doubt of the advancement of Alzeimers on my mother since lockdown and how much benefit she would reap from me at least being allowed into the home.

My mum went
Into hospital following a fall on 26th may she spent 3 weeks in 2 hospitals and has now benn in a care home for over 3 weeks . Me and my brother have only managed to see her twice . Every time we phone that’s if they answer the phone she is always asleep and we have only had 1 video call as apparently their internet is rubbish . Mum has lost at least 3 stone is constantly being drugged up as she is anxious and depressed and losing weight as she’s skipping meals through being asleep all the time . The woman we have seen is not the woman who left home 6 weeks ago and we fear we will never see her again . Her Alzheimer’s was under control at home but the home take her calls
Of help as behaviours so the lorazepam keeps getting administered. Heartbroken

Exactly the same thing happened to my mother when I put her in to a care home after looking after her myself for 8 and a half years she quickly deteriorated losing A lot of weight as the staff struggled to feed her after exactly 3 weeks in the care home she was rushed into hospital suffering with extreme dehydration staff in hospital prepared me and my sister for the worst possible outcome but after 3 weeks in hospital she made a recovery and had to go into a Nursing home instead which is wear she should have gone in the first place not a care home becouse the staff in the care home did not seem to have the time or the ability to cope with my mum unlike where she is now in the Nursing home, So I strongly recommend that you contact your social worker and have your loved 1 transferred to a Nursing home.

Mom is 89 and has been in a care home since January. She had started to settle in as the pandemic began. The home locked down in March. Now I can visit her but I sit outside and talk through an open door with carer present. Everyone comments that Mom is so happy and laughing. She’s always been that way but I also know she does it as it is expected of her and I can tell when it is not genuine.
She looks lost. I read her like a book and I know she is unhappy. I think she feels abandoned. She asks how long she will be in there for? I try to explain about the ‘bad bug’ going around and we’re keeping her safe. She has no idea where she lived before. With other visitors she puts on a happy show, but with me it’s questions and she looks unhappy. She forgets anything she is told after 10 minutes.
Do you think it would be a good idea to write short letters to her regularly? I could explain that we’re not allowed in but things will get better and soon we’ll be able to go out again. To reassure her regularly?
She is deteriorating. But she is a proud Irish woman with a love of life and a strong will. I hate that she thinks I have abandoned her. We are so very close. Do you think letters might help?
Regards
Jill

Hi Jill,

Thanks for your comment. We're really sorry to hear you've noticed this change in your mum.

It sounds like you're doing the right thing visiting how you can for now and in explaining the virus. The letters sound like a great idea too to keep in contact and reassure your mum.

We have some information on our website about keeping in touch with somebody in a care home during coronavirus which you may find helpful: https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…

You can also call our Dementia Connect support line for more information, advice and support tailored to your situation. The number for the support line is 0333 150 3456, and you can find more details (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful,
Alzheimer's Society blog team

This week I have had to put my mum with Alzheimer’s into a care home, because my dad who has bladder cancer had a small heart attack bought On by stress and I am just unable to care for them both. In addition to my day carer and my key night carers are going on holiday. We are all heart broken having to put her in there and not able to visit her. She finds the phone baffling and we all miss being able to reassure her with touch and cuddles. As a family we are all really struggling to come to terms with parting my mum and dad after 60 years of such a loving marriage. It just awful I feel sick and can’t sleep. Surely there must be something we can do to help families likes ours the length and breadth of the country.

Unfortunately, the situation is just as bad - maybe even worse - in hospitals, in Wales. My wife has advanced Alzheimer's Disease. She hasn't known who any of her family are, for over a year, but she still seems to get an emotional warmth when she sees any of us, on Skype calls, or in what I call "fish-tank visits" (We are outside a glass - walled foyer and she is inside with a nurse). She reaches out to us, when she sees us and looks pained that we can't hold hands, or hug one another. The problem is the Welsh Government First Minister says they have sorted out visiting for patients with dementia, but they haven't. They have merely passed the buck to hospital management. The hospital management, understandably, are very cautious about covid-19 getting into a unit full of very vulnerable and elderly patients. However, it is surely possible for patients to be put in a wheelchair and be taken around the hospital grounds by family members, with appropriate PPE being worn and hand sanitisation being practised. The hospital management have so far not even discussed this option with families and it is evident that the patients and their close family members are suffering as a result. The nurses who look after my wife concur that the patients would be doing so much better if they had visits from their family. There doesn't seem to be a plan for alleviating this suffering, from hospital management, nor from the Welsh Government.

I totally agree with Collete above.
It's convenient for care homes to restrict families.
Where's our parents relatives voice.
We cannot visit them but the staff can travel go shopping not wear masks touch our love ones.
We love our parents I would suggest We should be allowed access rather than making a 30 minutes appointment.
Only to find this week's appointments have all gone because I wasn't advised their was limited visits overall.
So my Dad has no visits for two weeks.

We don't know if they are being cared for probably.
Whose checking.
Seems to me They can do what They like...
They do not care for their minds..
My father says its a prison...
Boris come on ...help the most vulnerable .. who can help..

Hi. My mum is deteraiting fast at her care home.we recently realised that she isn't getting the care she needs. I want to tk her out of the care home and have her come live with me.. Could this be possible?

Hi Elaine,

Really sorry to hear that your mum's condition is deteriorating.

This sound like a difficult situation, so we'd recommend calling our Dementia Connect support line on 0333 150 3456. By calling this number you can speak to a trained dementia adviser who can learn more about your experience and give tailored information, advice and support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this helps, Elaine.

Alzheimer's Society blog team

I totally agree with these comments. The manager of my mum's care home told me when trying to see my mum through this period l should just go home and enjoy myself. That to me shows a total lack of care,understanding and empathy. Quality needed in care. They just don't want interference from family just your money. Mum has dementia and is in a care home. Initially l was able to see me through a glass door which was reassuring. I went weekly. Then suddenly in mid June when l visited l kept being told my mum was asleep so not able to see her. l battled to see her and after many email to head office as well. The home moved mum to downstairs room so l could have a window visit. I was shocked at my mum deterioration. She lay in bed confused looking frail ,now cannot walk. Being given a drink by carer through a breaker.
I feel angry if l hadn't battled l wouldn't know how my lovely mum had so sadly deteriorated during this time. I kept receiving generic emails saying all your loved ones well, Rubbish.
I appreciate the situation around covid but in my mind a balanced risk assessed approach to visiting is not being taken by some care home providers. I feel this is the case in my mum's home.
I am happy to have weekly covid test wear PPE ect to see my mum. I would be no more of a risk than carers working.

Hi I agree with Linda and Collette
My mum is 83 with dementia I have been told I can visit her 2 times a month , my fear is that she won't recognise me ...it's heart breaking.
I understand the covid risk but feel that private care homes are thinking of money values not the humanity of their clients and relatives....this is pure hell something needs to be done.

My mum has been in a care home since last August. Up until Coronavirus struck she was happy as there were lots of activities and socialising. Activities stopped for many weeks and have only just restarted. Many times she has said she is living in a prison. Thankfully she can still remember how to use FaceTime, but this no way replaces our twice weekly visits, trips out to the local garden centre for tea and cake and visits to tidy my father’s grave. Previously active, she sits about all day with no incentive to do anything. Once weekly socially distanced outdoor visits are now allowed, but there is no privacy and they will stop if anyone tests positive for the virus under the new retesting regime. When will things ever return to
normal for care home residents?

mum and dad are in a care home my dad is 90years old and desperate to see the family (he has 2 baby great granddaughters), he is also really desperate to get out on his mobility scooter. I can speak to him on the phone looking through his closed window. Skype didn't work with mum or dad (dad couldn't hear the quality was poor and mum didn't seen to focus on the screen) My mother is 86 has Alzheimer's and just before lock down I had a call from the home to say she had been very distressed pulling her hair biting her hands, kicking the walls and that it was becoming a regular occurrence in the late afternoon. I arranged to go and see her and give her a shower. When I got to the home I was told that head office had just announced no visitors. I was very upset that I couldn't comfort and care for mum its been so distressing. A few weeks later mum was found on her bedroom floor,; I was told that her wrist was swollen but they didn't think she'd broken it and she had a gash over her noes. The care home had phoned 111 and were advised to observe her for 24 hours and give painkillers. I asked them to speak to a doctor. The GP gave a zoom consultation and he didn't think she'd broken it, but the following day I received a call to say it was worse would I take her to A&E. She looked terrible with bruised eyes and noes, she looked so frail. She had broken her wrist in 2 places. After a cast was put on I took her back to the home where she had to stay in her room for 2 weeks. I knew how hard this would be for her, she has no understanding, she is active and doesn't watch television or read. She kept trying to come out, and at times they had to barricade her door. Mum needed someone with her, and I realise that the care home haven't enough staff to give mum one to one for long periods of time. The carers worked hard with mum and did what they could; keeping me informed of how mum was doing and telling me the truth when things weren't so good, I really appreciated that. Mum is fortunate in having a garden room, I offered to go through the back gate straight into mums room wear all the PPE and be with mum and help her whilst she was in isolation but I wasn't allowed. The staff have had such a hard job over the past months I really do admire and thank them for working in such difficult circumstances, wearing the PPE is so uncomfortable. We are now allowed to book appointment to social distance in the courtyard across a long table wearing a mask. It didn't work, mum was totally bewildered wondering why she'd been left at the other end of the table; she didn't know who I was behind the mask.
Whilst I appreciate how hard the care home have worked in keeping the coronavirus out, I really think it is time to relax restrictions. If mum and dad had the choice they would not choose to be cocooned, they would rather risk the virus and have quality of life, their short time left is precious. I would love to take mum down to Bosham harbour for a walk which has always been her favourite place, will we ever get the chance again?

My Dad died on 9th May, he was in residential care and had dementia. I do wonder if he would be alive now if Covid 19 had not occurred he had been tested but did not have the virus. In early lock down the home called to say he was not eating or drinking and would not take his medication. I did manage to Skype but he had his eyes shut and would not communicate. I believe he felt abandoned. I was able to sit with him and tell him how much I loved and missed him at the end but it was too late. This makes me feel so sad. My mum passed in March 2019 she also was in care and had dementia.

I feel your pain - my 99 year old Mom died in a nursing home April 21. I was able to see her the day she died but she was unconscious. My guilt at not taking her out of the nursing home and bringing her to my house is unrelenting. After reading your story I feel a little better just knowing I’m not the only one dealing with this.

When can my dad and me take my mam out for the day. Myself and my dad would follow COVID regulations when out with Mam.

Hi Fiona,
Thanks for your comment. Unfortunately we don't know exactly when this will be yet. We do have some information and advice on this page which you may find helpful: https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…
We've also been working to influence the government's care home strategy during the pandemic. You can read more about this work and join our campaign here: https://www.alzheimers.org.uk/blog/government-prioritise-dementia-coron…
We hope to have more news soon, but if you have any more questions or are having a difficult time, please don't hesitate to call our support line on 0333 150 3456: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
Alzheimer's Society blog team

I'm so sorry for your losses Tracey. And for your pain everyone here. This is the hardest thing I have ever been through. Like others here my Dad had only moved into a home a few weeks before lockdown. It is now nearly 3 months since we have seen him and we used to visit with my children every few days. My Mum will soon be able to visit for 30 minutes once a week but won't be allowed to touch him. I am beyond words as to why they can not let us see him outdoors for longer and with more family members. As others have suggested my Dad's quality of life if non-existent. Care home staff have family members within the home whom they want to protect for catching the virus and of course we understand that. However, as others have discussed this is the worst possible end to my Dad's life.

It is heartbreaking for all of us with our parents and close relatives isolated and deteriorating in this way, since16th March in our case. Nothing can take the place of direct family contact where dementia, frailty and deafness are concerned. Everyone has recently tested negative for COVID-19 at our Mother’s home which is wonderful and it is great that residents have been kept safe during the worst of the pandemic. Yes care homes have now reached the garden visit stage observing a 2 meter distance. Our Mother would not understand that at all it would upset her in the same way FaceTime calls have to date. Window visits are impossible for residents on the 2nd floor and she can’t understand how daily family visits have been taken away from her. However there seems no logic in having social support bubbles outside work which have been made available to everyone so includes all care home staff and management with no need for social distance or PPE except to self isolate if someone becomes ill. These members of staff currently go back into work potentially taking virus with them. Surely one family member should be allowed to make a direct visit to a care home resident at this stage to create a social support bubble because there is no more risk in that than being cared for by staff who are mixing in social support bubbles outside work. Our parents and relatives are deteriorating every day and their lockdown at this stage is not necessary. The Government appeared to have no plan in place going into lockdown for care homes and now seems to have no plan to come out of it. It doesn’t matter how caring staff are, our parents and relatives are lonely and in decline without family contact and they have just the same human rights as everyone else. To lose them prematurely through enforced long term isolation would be as bad as losing them to the virus.

Alzheimer’s Society I’m surprised my 23rd June comment shows earlier than 20th June comment from Jo. Where is the society up to at this stage communicating with Government about releasing lockdown in Care Homes, that is both Social and Private Care Homes. Thank you.

Hi Clair, thanks a lot for your comment and feedback.
I'm afraid I don't fully understand what you mean about how the comments are displaying. However, we've recently updated the commenting across the website, so this kind of feedback is really helpful if you're able to expand? Comments that are replies to other comments will always appear underneath the original comment. You can also use the filter to switch between 'newest' and 'oidest' comments, as well as those which have been voted as 'most helpful'.

In terms of the Society's latest actions communicating the Government, you may find this recent blog from our campaigns team helpful: https://www.alzheimers.org.uk/blog/government-prioritise-dementia-coron…

The team is still working hard to influence the Government's strategy for care homes during the pandemic. For all the latest updates and information about how you can help, you can join our campaign here: https://e-activist.com/page/59482/data/1

Hope this is helpful,
Alzheimer's Society blog team

Your comment is so true , we are in the same situation having not seen our mum since 12th March . She has declined so much and now doesn’t recognise us when we have a Skype call . She has started to ‘blank’ us and not speak at all on occasion and it breaks our hearts . My mum is 89 with dementia , 4 months of not visiting is an extremely long amount of valuable time . I agree that we should be allowed a ‘social bubble’ taking all necessary precautions as none of us want to pass anything on . The care home my mum is in has had 2 positive cases of covid , this hasn’t come from the families obviously so it has come from staff ( not on purpose or anything as they are trying their hardest ) I have noticed that my mum hasn’t been taken out of bed for the last few months ( maybe to restrict touching as she has to be hoisted ) we cannot wave through the window as she is on the first floor . Something has to happen soon for our loved ones and for us , I fear the loss of lives through this virus will be higher with people losing the will to carry on . We have to get back to visits and we have to get back soon

Agree

I believe care homes are finding it very convenient to only allow 15 minute once a week appointments outside with a nominated family member that cannot be substituted. It is excessive and harmful to our family members resident in a care home. Why can’t family members take on turn to visit? Why when the government says that 6 people from multiple households can meet up in a garden By appointment cannot we do this? Because it would be inconvenient for the care home. But families are shouted down when they ask to have what government guidelines allow, I have been accused of asking to put people at a ‘tenfold risk’. Don’t know who they use as a statistician!