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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116 comments

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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.

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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?

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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

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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.

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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

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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

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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.

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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.

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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

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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

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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?

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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 ?

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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.

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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

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Thank you for your kind words.

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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.

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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.

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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

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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

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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.

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It appears to me that every person with a loved one in a care home is in the same sad situation. It’s heartbreaking to see them hold out their arms to have a hug . I really can’t understand why the care home staff can hug and hold them while we can’t . Surely if we have masks on and rubber gloves we could at least hold a hand. Are the staff not capable of washing our loved ones hands after we have gone ? We are told that soap and water will kill the virus , true or false. Care homes have to be more responsive to family members. After all this is not a free service, they are paid huge amounts of money to care for our loved ones , with little or no interaction with family members. The blogs on this site are all heart wrenchingly similar, our loved ones do feel like they have been locked away, kept from loved ones who would happily isolate themselves so that they could give that all essential hug . I’m positive the staff do not isolate when they go home.
My other complaint is if a loved one is at the end of life and obviously remaining in their own room why can’t we hold their hand ? We can all be responsible and use sanitiser and PPE , it’s cruel and uncalled for. If the Care homes are struggling then the government should help families to care for loved ones at home. Some older people like my father are in a care home for their own safety because he can’t look after himself. He doesn’t have dementia and could be living in his own home if carers were more consistent with visits that lasted longer than 30 mins if your lucky. Our elderly fought for our freedom it’s time we fought for theirs.

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My mother has been in assisted living dementia care since April 2018. We are and have always been very close and I’ve taken her out and spent time with her every day since my father died in March 2018. Covid meant stopping that very important family contact with her. She has had a fall resulting in multiple fractures during lockdown and I have been denied access to her throughout. I’m a qualified nurse, midwife and specialist nurse advisor with experience working with infection control. I have continually been denied access despite my volunteering to help with her care and her dementia has been negatively effected as a result of the reduced activities during lockdown and lack of family contact. Now that I have finally managed to arrange visits to her room after 7 months of justifying why I should have access, I have been made to feel unwelcome by Receptionists and senior nurses and this has been questioned in front of my mother. She has picked up on their and my upset and I’m now concerned as to her mental health if access is again denied with another lockdown. Until her fall in lockdown I felt confident in their ability to care for Mum but no longer feel they have her best interests at heart. The staffs’ interests and other residents are being prioritised and the reason given for non access has been, and continues to be, “its not fair for others”!!!! When did we lose the ability to treat individuals like individuals? I’m at a loss as to what to do as my mother is settled but visibly missing family contact and deteriorating. I feel stressed about covid, father's death, mum’s loss, Mum’s care, her dementia progressing quicker without my input and addressing these issues with the Care Home adds to these stresses.

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