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 living with dementia and their families are being disproportionately affected by the COVID-19 pandemic.

As a result of interrupted healthcare and little to no social contact with loved ones, families and care home staff are reporting significant cognitive decline and deterioration in people living with dementia.

We know that good dementia care involves lots of social contact, which is why we are calling on Government to consider the needs of people living with dementia in their plans to lift lockdown.

Join our campaign today

We are standing with people affected by dementia. Will you stand with us?

Sign your name
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52 comments

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

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

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

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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.

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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?

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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.

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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?

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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.

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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

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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.

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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

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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

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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.

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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.

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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..

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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?

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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

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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?

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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?

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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.

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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.

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