Dementia Support Line
Real stories
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.
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.’
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.
Julie Jones
saysOur dad, Tony is 80 years old and has altzeimers. He lives in a care home and we have not seen him since February. My mum has seen my dad twice, once outside in a wooden hut which was a disaster as he was taken out of his normal environment, which is the worse thing you can do with someone when they are suffering from altzeimers. The second time she saw him was inside the home and was very distressing for her as he went to hug her and they were parted. My mum is 79 and is very upset to say the least, she is missing him and feels that he is deteriorating from not having close contact from his loved ones. The home is very good at keeping us updated via Facebook with regular photos etc. but we are missing out by not having contact with him. We have tryed FaceTime but my dad does not recognise us which is heartbreaking and his attention span is zero. We cannot go and see him at the window as his ward is within the home with no windows only on the inside.
We watched the BBC news today which we found encouraging about the vaccine and my mum phoned the home and they said even after the vaccine is delivered and administered my mum could visit but it would be behind a plastic screen. I watched the BBC news tonight and it showed a story of a woman whose mother was in a home and the daughter had the COVID test and got the results in 30 minutes and was then allowed to go and sit by her mother in the home and hold her hand she was wearing PPE but no plastic screens. We are so confused and my poor mum is ‘loosing the will’ We just want to go and see my dad and hug him. Altzeimers is a cruel disease as it is never mind the added torture of not being able to sit with him during the last few months/years of his life is that too much to ask ? Do the people who make these rules actually know anything about altzeimers and what it actually is like for families I do wonder ???
Paul
saysMy mam is ninety six I have only seen her about ten times through a window in eight months she has been in the care home four years. She always asks me why I haven't been coming in to see her which breaks my heart I last saw her last Sunday at window which are always closed then I went today and was told the home was in lock down due to some one has covid and I can not go to the window for one month I live on my own I'm sixty nine years old iv aways been there for my mam I don't know how she will cope its going to be along Xmas thanks Paul thinking of every body at this time
Lynn Gronnow
saysI really feel for you my mum is 95 in February I haven’t seen her since beginning of lock down it is breaking my heart there is a real possibility I may never see her alive again
Cindy El Zoghbi
saysMy mum is 83 and after taking care of her for years 12 years, I could no longer look after due to deterioration from dementia. She went into care last December. She remembers her five daughters and misses us so much. When I saw her before the second wave outside in a pod, she’d cry continuously and say she couldn’t go on without her seeing her girls. The second wave, the care home called me to say they were in lockdown on a Sunday morning when I had promised to see her that day as I knew the country were going into lockdown on the Thursday as Boris Johnson had said. No warning or time to prepare her. Then I had a 15 minute visit from her window which I discovered they had put lock on the window so it couldn’t be opened more than an inch. We were both extremely upset and I called the manager the next date ask why they had done so. She said, Suicide! I was in total shock. I said she’s on the first floor and disabled. Next day a contacted care Direct and spoke to a social worker. They said It was fire regulation. I went to see her today in a new built wooden pod outside. They had lost her hearing aid so I sat outside and she sat inside. It was heartbreaking as they came to take her away after 20 minutes. She became distressed and ask why were they taking her away so soon. They told her we are taking you to your room now. She asked them, “with my daughter“? I then told them, please let me explain to her before you take her. I told her, mum I had only 20 minutes and they are taking you to your room but I will come again soon to see you. Please don’t worry mum. With that they took her away. The young carer said, You are lucky, my mum is in London and I can’t see her. I replied, mum mum is elderly with dementia and doesn’t have time to waste. I cry myself to sleep at night. There is no testing and no vaccine ready for her. The government make it seem that it all fine and make us feel like it all ok. Why have they taken all their human rights away and us as family have no rights. I lost my father when he was taken hostage in Iraq and held in captivity for five months before he fell to the ground with a heart attack. I can’t see my mum dye alone too. I pray just to hold her and hug her before it’s too late. It’s just heartbreaking 😢😞
All I ask is for at least 30 minutes outside in a pod. What harm is that?
I even had a mask on.
I really want my mums window to be able to open. It’s like she is caged in her room
😞
Robert Phipps
saysMy dad has been in a nursing home since 2016 after having a stroke. When my mum passed away in 2005 I promised my dad i would look after him i when to his home six days a week he has dementia and was becoming vulnerable he was robbed in own home and knocked to the floor in2011 then in 2013 he fell down the stairs he fractured his foot and ended up in hospital i still whent six days a week to the hospital. He managed to get out of hospital and I decided it was time for him to have a ground floor property 2 minutes from ware l live he moved in 2014 and was very happy he then had a stroke in 2015 he spent six months in hospital and ended up in a nursing home. I still went six days a week I was shaving him I was cutting his hair I was cutting his finger nails brushing the few teeth he has left .I was his voice. In March I was told I could no longer go in the building so u spent six days a week looking through his window I did this for six months he use to beg me to go in and got upset when I told him I wasn't allowed. I finally managed to get back in in July 3 days a week 20 mins at a time .then the next lockdown November I was again told I couldn't go in so I went back to his window. The beginning of December I was allowed back in twice a week 30 minutes .each time I was wearing ppe and having a covid test every week I wasn't allowed to see him Christmas day first time in 61 year's. I have now been told I have got to go back to his window I am in my sixties and it his cold but if I don't go I think he will think I have forgotten him .
Kelly Ainscough
saysMy heart goes out to everybody that's missing there loved ones in care. My dad been in 5 mths with no visits!! Everyday is heart breaking.
Jenny
saysMy Mother is in a Care Home and has been there for 2 years. She is 102 and has very poor hearing and poor sight. I have tried FaceTiming, but it doesn’t work for her. She cannot see me through a window either. I do not see why I cannot see her outside somewhere. I have today been told that no one over 65 can visit. There are no screens and as far as I can see no effort has been made to arrange a safe place for me to make contact with her. It’s depressing for us both. The staff come and go home to their families, I live alone. I think the Manager should be forced to comply with government guidelines but she refuses to work with relatives and doesn’t understand how my mother or I feel. It’s making me angry...
Sue mayor
saysWrote to mp and just got the response that’s recorded. No personal response. We are devastated that mum is slipping away and not even allowed to see through a window. It’s torture
Lisa
saysMy gran is in a home after having a fall & breaking her hip after finding out that the first hospital she was in wasn't giving her the tablets she need ....so now she as gone down hill in 7 wks im so scared for her & our family that we might not see her again & its heart breaking keeping loved ones away at such a sad time
Hello Lisa,
We're sorry to hear about your gran's situation. This must be a really difficult time for you and your family.
Please know that you can speak with one of our dementia advisers on 0333 150 3456 for information and support: https://www.alzheimers.org.uk/dementia-connect-support-line
If you're looking to talk to others who have been through a similar situation, you can turn to our online community. Share your experiences and ask questions on Talking Point, or just read what other people affected by dementia have to say: https://forum.alzheimers.org.uk/
We hope this helps for now, Lisa. Remember to call our support line if you need someone to talk to.
Alzheimer's Society blog team
Karen Singleton
saysI have only seen my dad twice through a window to do an assessment. And when he was very poorly the home allowed me to see him with ppi on. He still not to good but better than he was. I now can't see him again but need to. He deteriarating quickly and he has dementia. Am scared for him now not knowing who is am and were he is.
Mary Freeman
saysI have only seen my mum 3 times since the middle of March, prior to that I would see her practically every day. My dad died in January so I feel like I have lost both parents. The deterioration from March to August when I was allowed to see my mum was shocking, I last saw her on the 7th of September and so I’m expecting her to be much worse. She had forgot who I was in august. It’s just so sad, I understand that the residents have to be protected but there must be a way of getting family in safely. My mum was so ill with covid and fast tracked out of hospital and it seems to have brought on terrible memory loss and total muscle wastage. I miss her so much and I hope the testing comes in so I can see her soon. My heart goes out to all family’s who are in the same position. It’s absolutely tragic.
Bev Gilroy
saysHi, my mum died beginning of April with a short unexpected battle with cancer. My brother and I nursed her at home during the big lock down. Dad was sleeping upstairs, doing the garden and going for walks after her passing. He then had a fall and then to cut a long story short a catheter a urine infection and pneumonia. I had left work to care for him as he had already started with dementia. Being ill accelerated this and he went straight from hospital to the nursing home, unable to walk, needing care with everything. So with covid he hasn't seen anyone familiar until last few weeks now only with two tables between us and me with a mask on. He barely knows I'm there or who I am we are devastated at his deterioration, not being able to get to him. I fear he will have forgotten us completely by the time we get in to him. He's been in since early August. It's an unbelievable nightmare for everyone 😢
Shirley Brown
saysMy friend is living in assisted living, and the warden has stopped the residents meeting up with each other in the lounge they're paying for is this legal
Hi Shirley,
We'd recommend speaking with one of our trained dementia advisers about your friend's living situation. They cannot provide you with legal advice, but they can listen to the situation and can to tell you about organisations that may be able to.
You can call the Dementia Connect support line on 0333 150 3456: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, Shirley.
Alzheimer's Society blog team
Linda Morrison
saysMy mum went into a new care home on 13 July 2020 and it was the hardest decision my sister and I have had to make. We had to leave her at the front door and have never even seen inside the home or even had a video vewing of her room. Now it feels like the worst decision ever made. Whilst we fully understand that the care home is working to keep mum safe and well and they are looking after her, it's absolutely heart breaking not being able to see her. We have managed to see her about 6 Or 7 times for a half hour each time but staff keep testing positive and they go into a 28 day full lockdown. We are now on the 3rd time. Her birthday is coming up at the beginning of December and it is horrendous as we won't get to see her. I have been asking why I cannot wrap her birthday presents in plastic and seal them and they could quarantine the parcel for a week or two before her birthday but no . . Not allowed. . Government policy . . Which I cannot understand ad other care homes in Glasgow and surrounding areas allow this. We are also not allowed to hand a birthday card in but we can post one, so obviously the royal mail staff must be exempt from catch covid. We can have the staff shop for some gifts for mum but we can't buy them and hand them in or have them delivered. Someone please tell me where the logic in this is . . It's so distressing when speaking to mum and even more distressing with video calls when she's asking to come home and saying she misses us . . You can hear the joy in her voice when you call and it absolutely has me in tears every time. I know she's safe and well and with the Alzheimer's I know she won't remember everything but this government need to do more for families to get us into see our loved ones. They are not doing enough and I agree with the others . . Don't treat our parents like they don't matter . . . They need the love as much as we do and children do. I will fight tooth and nail to see my mum and at 62 years of age this is the first time in my life I haven't been able to spend the time with mum on her birthday and whether or not she knows it's her birthday she's still entitled to celebrate with her family. There has to be more the care homes can do for visits and no more excuses about not having enough staff. There are a lot of people unemployed due to the current situation so care homes should not have that excuse. Get us tests, vaccine whatever it takes to get back to even outside visits . . Come on Nicola Sturgeon . . Get the care homes sorted . I feel for you all with loved ones in care.
Marie
saysThis cruelty has to STOP! On her diagnosis I promised my lovely mum I would walk every inch of the way with her as she journied through dementia, she was initially terrified but eventually felt reassured as we spent more & more special times together, we talked freely about the illness & together worked out ways to get round each obstacle as they appeared.
However after a very bad fall, & a long op to pin a broken femur, the dementure was hugely exacerbated. Overnight she went from independent living, excellent mobility & a very happy nature, to requiring 24 hour care. We still enjoyed lots of time together with lovely trips out and LOTS OF CUDDLES....Now...after 9 months locked away, she is suffering from depression, is weepy, not eating and desperately asking to go home. I'm at my wits end, I can see myself becoming very low too, I have days and night where I'm also becoming weepy because I feel I've abandoned my lovely mum. It's heartbreaking. I'm haunted by images of her distress. I struggle with the fact that the staff (who are lovely by the way) can come & go, back to their own families then return to work where they have full access to my mum, yet I'm not allowed.
The only difference between us is, the staff are tested and we are not....something MUST BE DONE!!! My lovely mum doesn't have time in her favour she is 93 yrs of age & yet, it's a role reversal for she is now the child & im the mother. Would the government lock away our children & instruct us to abandon them I wonder? I too have courted the possibility of bringing her home even though I could end up caring for both my mum & my husband.
Rachel
saysJohn's campaign has highlighted that 'there is no law against visiting by close family in either care homes, hospices or hospitals and the other is that people's right to have their needs and risks looked at individually is as valid in current tiers two and three as in tier one'. Does this mean that as relatives we can ask for a risk assessment and get in to the Care Home now?
Claire Rayner
saysMy Dad was admitted to a home in August 2019 with dementia after rapidly deteriorating from January 2019. I have not been able to visit him since March as he is in Birmingham, I watch videos on the care home website and he has lost so much weight, aged about 20 years and just looks incredibly lost. It breaks my heart, when I last saw him he was very chatty albeit random but his face lit up when he saw me. I am terrified he will have no idea who I am and I know the carers are doing their best but the change in him from not having contact with family is so distressing. I HATE the incompetence of this government, the lack of strategy and feel the our care homes and their residents have been abandoned.
Lucy bannerman
saysDear Claire,
This is heartbreaking. I'm so sorry to hear you're in this situation. I'm a journalist at The Times and I'm trying to speak to people who are struggling to visit their loved ones in care homes because of the Covid restrictions. We want to highlight these awful situations so many families are finding themselves in. Would you like to talk about this situation?
If you, or anyone reading this, would like to contribute to the article, please contact me on 07824311766 or [email protected]
Laura Farrow
saysCan someone please tell me how do I start a petition to at least see my nan at the window in Alexandra house in harlow Essex please. I'm so angry and upset. I was told yesterday that if I come to my nans window, they will call the police on me. She went in there in April, I was aloud to come to the window a few times in the summer and I dont recognize her as she has lost that much weight.she keeps saying I'm so lonely and depressed. My heart hurts so bad as she brought me up and I dont have any other familie members in my life. The staff are so rude and got attitude problems. Its always hard to get through on the phone. Plus my nan lost her partner and I had to tell her and I wasn't aloud to cuddle her or anything and now she is so weak, she cant hold the phone to her ear, so I can hardly hear her. Can someone please help me do a petition as I feel like I'm slipping away with her, it's too painful.
Hi Laura,
We are so, so sorry to hear this.
Please do give our Dementia Connect support line a call on 0333 150 3456 and one of our Dementia Advisers will be able to give you advice and support.
We are working hard to push the Government for further change on letting family members visit loved ones with dementia in care homes. We're campaigning for local councils to undertake our recommendations (https://bit.ly/3hVemhV) so that families affected by dementia are better connected in a way that works best for their needs.
We implemented this campaign (https://bit.ly/2EGfVSH) following national guidance that gives local authorities the autonomy to work with care home providers in their area, and support how they develop visitor guidance following local risk assessments. We're confident that our recommendations will ensure that families affected by dementia will be better supported to visit loved ones living in care homes.
Also, our chief executive has led a group of dementia charities to call upon the Prime Minister and Secretary of State for Health and Social Care to give key worker status to family members of people with dementia in care homes and the community. Following our joint open letter (https://bit.ly/3gTdx7S) we've been reassured that further guidance on this is coming, and we remain in regular contact with the Department of Health and Social Care to hold them to account on this.
Best wishes
Lucy bannerman
saysDear Laura, I'm so sorry to hear this. It is heartbreaking to read the comments from everyone here. I'm a journalist at The Times and I'm trying to speak to people who are struggling to visit their loved ones in care homes because of the Covid restrictions. We want to highlight these awful situations so many families are finding themselves in. Would you like to talk about this situation?
If you, or anyone reading this, would like to contribute to the article, please contact me on 07824311766 or [email protected]
Daisy
saysThis is so like my mum and my situation! For last 20 yrs I’ve been mums carer. It was her choice to go for respite when she was diagnosed with Lewy bodies dementia. And liked it so much she asked to stay. All has been well and she has been happy. I have still come to see her every day because we are so close. Lockdown in March horrified me but I still came everyday and sometimes she would ask why did I even bother if I wasn’t bother to come in and sit down! I had to explain daily but she coped! Hated not hugging and having to prompt carers to meet her simple needs constantly! One day out the blue I was told me at a closed window was a risk and not to come anymore! I said no way i would allow my mums rights to be taken away! I also was threatened with arrest!That was 10 weeks ago! The last 34 yrs I have only had 2x7 day holidays away from her and every other day we spent together. I have fought for her rights and her routine to be kept as close to normal as possible. I have my local MP. 10 social workers . The mayor . With no results! Her care in home is not what it should be I have to beg for FaceTime which is rare and she is heartbroken . Her rapid decline I know is isolation . Gifts and stuff I know will bring her a little joy are not given to her . No exersize and sometimes an attitude from management which is appalling. I have asked over and over as matter of emergency for appointed social worker so I can bring her home and nothing 10 different ones and still denying any help! It’s barbaric cruel and unjustified. Now government confirmed window visits. Home said when they put measures in place! How dare they treat a human being worse than an animal. All help and all care has gone and replaced with neglect and misery! Every part of this is abuse by everyone allowing this to continue. Evil
Christine Igoe
saysHi Laura
Have you managed to get a petition started ? This is soooo much worse than the outside world truly knows about.
If no petition has been started then it would be an honour to start one.
I read people's comments and believe me I definitely know how it feels to constantly have a heavy heart.
My mum is my whole and always will be,let me say not one person who puts a post on this forum is alone. We might not know one another yet but we have made that first crucial step. We spoke up so lets stand together. Put our shoulders back and STAND PROUD. WE CAN MAKE A CHANGE. I DON'T mean next year I mean NOW. Laura please stay strong Xx
Lynne Riley
saysIts 2am and again I can't sleep worrying about my Mum. I've seen her once through a window since March and I had to appeal and almost beg for that. When we were put into tier 2 they stopped the window visits one week after they eventually allowed them. Last week on a video call I noticed my mum had had her hair cut. When I asked the carer she said they had allowed the hairdresser in. I asked why that is allowed when family aren't even allowed in the garden their excuse was the residents were looking unkempt. I am fuming. Their attitude towards family's is insensitive and I know they see us as an inconvenience. I intend to take this further
Lucy bannerman
saysDear Lynne,
This is awful. As you may have seen, in my replies to others, I'm a journalist at The Times and I'm trying to speak to people who are struggling to visit their loved ones in care homes because of the Covid restrictions. We want to highlight these awful situations so many families are finding themselves in. Would you like to talk about this situation?
If you, or anyone reading this, would like to contribute to the article, please contact me on 07824311766 or [email protected]
Rachel
saysMy father is in a Care Home and we haven't been able to get in for 7 months, thankfully we have been able to see him through a window but during this time he had a fall and went into hospital where we could actually make proper human contact with him. Then he was taken back to the home and isolated in his room and swabbed I don't know how many times a day! When we eventually did see him he had lost so much weight and deteriorated to the point that I couldn't help crying, he was so altered. During that convalescence time his family should have been allowed into the home as an essential visit but this did not happen. We have continued our window visits as face time and modern tech don't equate to actually seeing your relative and would be useless to dad anyway with his dementia. During the window visits he has sometimes been happy to see us, othertimes frustrated, distressed, beckoning us in, trying to reach the locked window and crying out loud. How utterly heartless a system that would cause such distress to a dementia sufferer and their family. It is horrible to witness your loved one like this who is unable to process why you are standing outside. We are looking into taking dad out of the Care Home. There are so many moving stories from people and to realise that this is happening on a huge scale in a country that people would call 'civilised'...
Cheryl jones
saysHi my name is Cheryl and we are in the same situation as yourself with your dad can i ask did you get your dad home we are so worried for our mum
Best wishes
Rachel
saysHI Cheryl, We have been in contact with About Healthcare & Social Services who have sent our urgent referral to scheduling, we are still awaiting a meeting to discuss further. The final deciding factor will be whether it is in his/her best interests and also giving valid proof that you and your family (with the help of carers if need be) can give the best care to your relative. I hope your situation improves.