Dementia Support Line
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.
Teresa Cook
saysMy son is in a nursing home - he went into a diabetic coma - resulting in a dementia. He is now 60 yrs old. He is in a nursing home with very elderly people.
I went three times a week to take him out to the shops & see his sister. His nursing home never took him outside anywhere. He looked forward to my visits . Now he stuck indoors in a unit with no outside space - he has become very distressed & lost a lot of weight.
When the first wave started in March 2020 I tried to get him out of the home to live with me - I was told it would be a lot of red tape to get him out & then the carehome got Covid so he didn’t come home.
We his parents are in our eighties & resigned our son would have to stay in the nursing home.
I’ve seen him on the times I was allowed to visit fir 20 mins once a week - in an outside pod with a plastic screen between us.
Every visit he asked us to take him out but gradually stopped asking & became quieter & now looks so unhappy & sad.
He has still not been vaccinated - his care home had the virus in April & have it in the home again.
I’m worried sick about my son but are not told anything - I think it’s a good nursing home but why must they be so secretive? I knew people in the home had died with Covid - but not told how many - I only found out by accident the home had Covid!
It’s a big home & they have Covid again but I not told if it’s anywhere near my son - I don’t know if he is in danger - it’s wrong ! He’s my son.
The residents have still not been vaccinated- I’m told they won’t be while there’s Covid in the home. It’s a big home with many departments - why can’t some of the residents be vaccinated?
My self & husband have been vaccinated now.
I’m told also his doctor will not go into the care home while it had Covid.
I have not seen his bedroom for nearly a year - seen what he needs - just to care for my son.
I can’t wait to hold my son - take him out in the fresh air - show him some normal life outside his prison!
It’s not really the care homes fault - it’s this terrible virus - my son would die if he caught Covid - But my son is so miserable & unhappy & I fear it will be many more months before care homes allowed visits inside their homes.
linda lovell
saysI feel for you Teresa as l am sure most people do that have posted on hear .I hope you can see your son soon and take him out as you use to do Thats all we all want to see our loved ones smile again . I hope you can take comfort in knowing l feel your pain
Donna Clark
saysBeing stopped from visiting our loved ones, is simply devastating. My Mum has Alzheimer’s and is in a care home. I agonised over leaving her there or giving up my job and moving her in with me, not only because of the visiting restrictions but the fear of her getting Covid-19.
I delayed in doing this because I stupidly thought things would get better with a vaccine in sight and also had to weigh up the financial implications having been widowed last year. She has been safe but 3 days before the vaccine day, she and other residents tested positive along with a staff member. I am absolutely devastated. Her fate was in someone else’s hands. I feel so guilty that I knew this was possible and didn’t protect her. Although she is receiving all the treatment she would get in hospital ( other than a respirator which she would not want) the doctors have said she will not recover from this and you have to think about where she would be most comfortable. These are times nightmares are made of and I feel for each and every person not being able to see their relatives in what are probably their final years/months/days. It’s heartbreaking for all. This is going to cause life long distress and the Government need to know this. Sending love to each and every person right now being denied so much. X
Dawn
saysI have the same with my mother we all miss her so much, isn’t there enough pain in the world without our loved ones feeling there on there own. The possibility of my losing my mum is killing me. I just want to be close to her we are her family not drs or nurses. We should have the right to be with them at home. Family is what they wish for.
Us too. I want my mum back home 😢😢😢😢😢😢😢
Michelle Holdsworth
saysSuch sad stories ,go with your gut instincts normally theyl be right
linda lovell
saysHow do you get out of the never ending spiral that says a home has to be free of any possitive covid test for 28 days the home my mum is in is constantly telling us some one else has had a positive test back and another 28 days are added they have done the same again todaywhich was the last day of the 28 so now we start again and we cant go any where near the home also it means my 92 year old mum cant have her 1st vaccine either this could go on for ever is this happening to any one else.
Kay CALLAN
saysYes. Still not been able to see my Dad. Earliest date now 7th April provided no more positive tests. The 28 days needs changing. What is the rationale for this? If a whole household had covid they would be allowed back to work & school after 10 days!
Geraldine Mold
saysMy dad is 92 and went into a care home in March 2020 the before lockdown. At first we could visit but now we can't. My father had a fall a couple of weeks ago and was in hospitail. No visitors. He came back to care home and had to isolate in his room for another two weeks spending Xmas day alone in his room. He is depressed I am depressed as can't see him. Something has to be done and quick. We should be making memories with our elderly parents. Not locked away.
Maggie Riley
saysMy mom first went into a care home in July 2019 . I thought I’d chosen the right one after looking at several . My mom had always had a lovely home so my sister and I wanted the best for her. We sold her bungalow and that’s what’s been paying for her care.
She was in the care home until she had a couple of falls the first apparently causing a bleed to the brain. She was never taken to hospital and because it was lockdown was not allowed any contact with either myself or my sister Each time we rang she wasn’t able to talk to us and we were told that she was very confused probably because she’d got concussion. Still they didn’t get her any medical help. About 9 days after the first fall I received a phone saying she’d had another fall I’d tried to speak to her only about 40mins previous but she seemed totally out of it. This time the paramedics were called and when we asked if we could go to the hospital with her they refused because of “COVID” They didn’t take her in that night but one of the carers said he was concerned about her and rang the paramedics the next day. Again we weren’t allowed to go with her. That afternoon I received a phone call from the hospital saying that mom was unresponsive and probably wouldn’t pull through. I was devastated and rang my sister who had been waiting outside of the hospital for the last 2hours again being refused entry.
We still never got to see her and she was in hospital for 3 weeks . We rang every other day sometimes it took up to 8 hours before we could get through . The nurses on the ward were rude ,lacked any kind of compassion and gave us no information at all.
After the three weeks they said they were discharging her. We didn’t want to put her back in the original care home because of the dreadful care. We decided to see if they had a place in the nursing home where my sisters mother-in- law was.
She was given a place at an astronomical price but we were desperate to get her away from the other home so we agreed. The manager seemed really compassionate and couldn’t do enough for us until she got there . He said if we turned up on the car park when she came from hospital we could see her no contact but at least we could see her. She seemed like she recognised us , she was in a wheelchair unbelievably thin and virtually unrecognisable. , but we were just grateful to be able to see her. After that she had to isolate and there was no form of contact because she couldn’t really talk. On December 11th I received a call from “ continuing health care “ they said mom had rapidly deteriorated and she was being fast tracked. They said from that day they would be paying for her care., because she was end of life.
We tried to get in touch with the manager by email on lots of occasions so that we could visit. He chose to ignore us for days and then agreed to a visit on Christmas Eve. We were elated,
However we still carried on paying which apparently was an administrative error. We were given a second visit on Tuesday 5th Jan but was told we probably couldn’t go again because of the restrictions. We said we should be allowed because of the fact that she was end if life. That same afternoon my sister received a call from the owner of homes wife who dealt with all the administrative side . She said we needed to pay a top up alongside the continuing healthcare payment of basically £400 a week. We agreed , but then the next day I received a call from continuing healthcare to arrange another assessment visit for my mom . She was horrified when I told her about the top up and said you shouldn’t have to pay anything. This is where we’re at now , the administrative person( owners wife) wouldn’t answer the phone. Tonight the actual owner has rang my sister and was really awful no compassion and in a nutshell you either pay or take her somewhere else. We have never tried to get out of paying for her care but was told that legally we shouldn’t be doing so anyway. My sister was so upset because she didn’t expect the lack of empathy and compassion he showed . And as we expected he won’t let us see her anymore.
We’re just devastated and don’t know what to do.
Whatever we do won’t help my mom because I don’t think she’ll be here much longer but if we can stop other people going through this it’ll be worth it
Karron Lovatt-Fraser
saysSo sorry to hear about the appalling treatment from the home. You never know how good/bad it is until you experience it day to day. All the CQC reports don't go into enough depth about the important things like treatment of relatives, communication and problem-solving. We got my mum out of such a place and landed on our feet with a brilliant nursing home. Now it's my dad that needs respite to assess his needs, and I genuinely believe in January 2021 the hard and fast rules around no test no admission (dad has refused tests) means his needs are being delayed when there is no time to lose.
Megan Le Grys
saysMy Mum has dementia and is in a Care Home which at 5pm last night cancelled all visits to residents for the foreseeable future, despite having a Covid Safe Visiting Pod. Apparently this is because Public Health England have arbitrarily decided that Care Home visits constitute non-essential journeys. If they pretended that my Mum was 9 instead of 93 perhaps some consideration for her mental health might b shown. We have already been deprived of spending what could well be her last Christmas with her and had a visit booked for her Birthday on 6th February. Now we may well miss what could be her last birthday as well.
Kath hodges
saysI hated reading this. So painful for you. My mums nursing home initially shut to all visits.
The government guidance clearly states visits should go ahead thro a screen or pod. Very clear in the guidance. It’s not great is it ? I cannot soothe or connect with mum via a screen pod but it is better than Skype calls.
Please do challenge this with the home as it seems to me they are very defenitely mis interpreting guidance.
Nichola Lines
saysI am horrified by these stories and have two parents one with Alzheimer’s one with vascular dementia in two different hospitals. Where has the right to familial contact gone? My mother, father and myself have all been vaccinated and my mother is post Covid. She has been searching for me since she was admitted on section last November. A carer who came in to allow me to sleep, had no English and terrified my mother. She asked the carers to leave and got upset snd frustrated. She tried to hold on to my father who was frail after a stroke. Since being sectioned last Autumn we have only seen her once she is pacing and misidentifying me: it’s desperate. I
have been told I am not allowed in to see her even though her distress is caused by not seeing me....
Loraine
saysMy dad who had Alzheimer’s Dementia was taken into hospital on the 13th September 2020 with a chest infection.My dad was in hospital for 6 wks my brother got to visit for a week then the visiting stopped.My dad was then transferred from hospital to a rehabilitation centre with no visiting,dad had to isolate for 14 days 2days before the finish of his isolation my dad tested positive for covid which they said he must have caught while in hospital I was horrified he is 85 yrs old but luckily he showed no symptoms so that was another 14 days isolating in a small room and unfamiliar surroundings.Then dad got C-diff which they also said he must have got while in hospital he lost 2 and a half stone in 3wks we got face time each day it was totally heartbreaking sometimes he was very sleepy and other times they said signal was not working well.My dad was in this rehabilitation centre where we saw no improvement in his mobility or eating he was there for 4weeks and 4days and suddenly passed away on the 28th of December we are all totally heartbroken,We are a very close family and I just can’t come to terms with his loss I can’t stop thinking about him in that room no visitors and don’t even know if he was in any pain.I am so angry that they are treated like this it it just a heartbreaking situation and you don’t know what is going through their minds, not seeing their loved ones and thinking that we don’t care about them.Then you have them resting at the funeral homes with closed coffins not being able to put in clothes for them and not being able to say goodbye and we have to live with these restrictions for the rest of our lives😪😪😪😪
Hello Loraine,
We are so sorry to learn about the devastating loss you're dealing with. This must be an incredibly difficult time for you.
Please call our Dementia Connect support line on 0333 150 3456 if you need any emotional support. Our dementia advisers are here to listen when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/
We hope this is helpful, Loraine.
Alzheimer's Society blog team
Cheryl Tyler
saysMy mum had a fall 3 weeks ago and fractured her ankle. She has mild dementia after having a number of strokes over the passed years. She's been moved from hospital to another hospital and now a care home. I had no choice of where she was going and was unable to see her Christmas day! I have had a few phone calls with her, and she cries! It is breaking my heart. They've put her in an up stairs room for a two weeks isolation, even though she had a test and it was Negative. We've asked if we can see her through a window and they have declined. She's so unhappy and is losing the will to live.😔
Maurice steed
saysI had the jab. I had the swab nose a nd throat wore a mask, and was still refused entry past a screen. What a farce. Mypoor wife has demecia and is confused I cannot go in. That was before the grade 4 came in.
Stan Hill
saysAm I allowed to have my 80 year old relative for christmas day we are both in tier 4 and she suffers from memory loss
Stan
Hello Stan, thanks for your comment.
Everyone’s circumstances are different so you will need to look carefully at the government guidance.
The guidance on GOV.UK states that if you live in a tier 4 area, you cannot meet other people indoors, unless you ordinarily live with them, or they are part of your existing support bubble. We explain ‘support bubbles’ here: https://www.alzheimers.org.uk/get-support/coronavirus/support-person-de…
The following government guidance is specific to the protection of people more at risk from coronavirus in tier 4 areas: https://www.gov.uk/guidance/tier-4-stay-at-home#protecting-people-more-…
For further information and support, you can call our Dementia Connect support line on 0333 150 3456 to speak with one of our trained advisers. Please keep a note of their Christmas opening hours: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this is helpful for now.
Alzheimer's Society blog team
Anna
saysI am very distressed that I am unable to see my dad at his care home. He had to become a resident there during the pandemic so I have never actually been inside e care home. The care home have said they are doing window visits for Christmas and that’s it. I think both my dad and I would be distressed at this. He wouldn’t understand why I am not going in to see him. And i don’t want to make him distressed. But I also can’t bear him sat in the care home, wondering where I am and feeling like I don’t love him. I am really struggling and am heart broken.
Ann Handy
saysI am so sorry for all the family's who are going through this nightmare situation in care homes with their loved ones. Our family has just found out that the residential care home my mom lives in has cancelled all pre booked Christmas visits from 23rd December! The home says its got nothing to do with the covid situation, it's because the majority of staff will be off duty during the Christmas break and the home will be run by a few skeleton staff. So we cannot see our loved ones, however the staff are able to see their family at Christmas, which is totally unfair. In addition, the level of care could be reduced because of this policy, as it is a demanding dementia friendly home. I am so angry but what can I do? Mom is already deteriorating mentally, due to the covid visiting rules and I know this new policy is going to devastate Mom physically and mentally. I am heartbroken.
Mary Bedford
saysI believe I have had a similar experience. I wanted to Skype my mother on Christmas day, using her own IPAD I bought her 3 years ago. I sent emails to the activities team and nursing staff letting them know they could contact me between 11.00 -13.00 and again between 14.30-16.00. My mother has late stage LBD and sleeps a lot so the staff know when she is up and alert and better able to appreciate a Skype call. I waited until 16.00 still no call. When I phoned in there was no one on reception. Finally someone answered and I got to speak to her but she was in bed in Christmas day at 16.00 and sleepy which is what I was trying to avoid. I believe there was only a skeleton staff on and the activities planner emailed out was for the walking, talking residents only.
Having worked in this field for many years and having a Ph.D. in cognitive neuroscience, reading your's and others' experience and from my own observations, care homes seem woefully ignorant in understanding the psychological and emotional needs of people with dementia, particularly the later stages. If they weren't they would put more not less staff on for Christmas; it's supposed to be a family time. All forms of dementia are tragic in themselves; denying access to family in a meaningful and safe way is inhuman. It is only family that appreciate all they have done for us and our visits are a way of demonstrating that. Visits also allow us to support them through a devastating disease and not being able to do so is equally, devastating.
Ann Handy
saysMary, so sorry to hear about your Mother, it must have been devastating for you. I agree with everything you have written about. If the care home is disrespectful to the relatives, I dread to think how they treat our loved ones. My mothers care home website states Christmas visiting is as normal, so why have they closed the home for visiting? My mother is paying nearly £1000 per week to a business and that is the problem. She is a profitable commodity to them, not a person, who has feelings and emotions. I am heartbroken reading all these stories and I will write to the CQC, however they do not take on individual complaints.
Julie Bolt
saysReading your post Mary, I so understand your feelings. My Mum lives in her own home with a live in carer from a care agency which has been incredibly negative about enabling family visits. After the first lockdown was eased they were still refusing family visits of any kind. With the help of a CQC inspector who 'knows' the care agency I got regular garden visits established. Then in October we agreed protocols for indoor, socially distanced visits with PPE. My last visit was Christmas Eve - I arrived to find a relief carer , Mums usual carer had been swopped out without notice. This carer did not where PPE and I had to ask her to socially distance . When I alerted the care manager to this she basically called me a liar by saying the carer had sent her a photo of herself in full PPE ahead of my visit !! Unfortunately, while many of the carers are good , the care manager has a 'back covering' mentality which includes using misinformation and allegations against family members to respond to care concerns. Today she has updated the visit policy to no longer allow my Mum to have family visits. I will be going back to CQC...... We must keep fighting for the right of our loved ones to have family contact, however stressful it is for us to pursue this on their behalf. The alternative is the even more heartbreaking separation that so many of the comments on here show.
Ann Handy
saysJulie I agree with you regarding care providers, as they supposed to support the duty of candour. They are not open or honest and the home is treating us with contempt, I have complained to the manager of the care home in writing, however they have not responded. So what can I do?
Sandra Woods
saysFamilies are in in awful position in a lot of cases of being too afraid to assert themselves about their rights to see their loved ones in case of reprisals against their loved ones care.
Mum has dementia and ha recently been diagnosed with stage 4 cancer but I am still unable to see her as the home have said that she is not at end of life. I want to spend time with her before she reaches that stage. This is downright cruel on many fronts and urgent action is required to stop homes who are covid free from denying visits.
Laura
saysIt totally feel for you. My fit and able chatty Dad had a major stroke in July and has been in hospital and care homes since. When he was in hospital we could visit each week but the care home won’t allow it. He is 84 and seeing no one has definitely made him worse. I can’t get my head around hybrid fact that the nurses looking after him are all maxing with their families but we aren’t allowed to visit and would probably be even more careful??
Jane
saysWe all fully understand the need to be careful in these difficult times but sometimes this can be too much for all concerned. We are not allowed to visit my father because the care home only allows outdoors window visits. BUT because I have to drive my disabled mother to the care home and push her wheelchair to the window I am classed as from a different household, even though I am her "bubble"carer. So even if I was to walk away and leave her there she cannot see my father. This is very hard for her as she has nursed him for many years. I pnly hope the rules change soon.
Rachel
saysNow things are loosening up ever so slightly in regards to visiting in care homes why can't Care Home managers arrange for a designated room which is cleaned each time a visit takes place - so that family can go and visit their relative without these ridiculous screens.
Angie
saysMum has been in care home just has the 1st lock down started in March...mum has early on set dementia is unable to walk..even so mums only enjoyment is having a cigarette i know its bad for her but that's what she enjoys...mum has to come outside for visits but care home has stopped her smoking when I visit ...mum sees my visit a time that she can smoke mum now gets very stressed because she can not have her cigarette...when mum smokes she is away from everyone and outside...I know more important things are going on in the world at the moment but I just feel like mums human rights are being taken away ..