Trevor with his wife Yvonne

Separation from care homes: 'Lockdown instantly disconnected us'

For 12 weeks, Trevor has been unable to visit his wife, Yvonne, who lives in a care home. Trevor wants assurance from Government that they will consider the needs of people living with dementia, like Yvonne, as they begin to ease lockdown restrictions.

It has been 12 weeks since Trevor has been able to visit his wife, Yvonne, who has dementia, at her care home.

For nine and a half years, Yvonne and Trevor were able to manage her condition together.

In May 2019, it was decided by Trevor and their children that the best next step, for both Yvonne and Trevor, was for her to move into residential care near their family home.

Since then, the family have been greatly content with the level of care Yvonne has received. 

‘It was so important to me that the care home staff became Yvonne’s surrogate family, and the residents became her friends. That’s exactly what happened.’ 

Despite his trust in the quality of care Yvonne has received, Trevor is deeply concerned that the ongoing pandemic is forcing him and other families to lose control of their loved ones and their care.

With little mention of plans for care homes in lockdown easements, low staff workforces, and inadequate testing and PPE provision in care homes, Trevor fears that his wife’s condition is being put at risk. 

 'People living with dementia need routine and stimulation, familiarity and hugs. With the arrival of coronavirus, and as a result of lockdown in her care home, the regular heartbeat of life in the home changed overnight.

'The familiar faces of care home staff, family and friends ceased to appear, and of necessity carers had to hide behind masks and were unable to wrap their arms around the residents.

'It is no wonder that Yvonne lost her sparkle and found herself in a world which she doesn’t understand.'

Trevor's wife, Yvonne, sitting outdoors

Yvonne sitting outside and enjoying the outdoors

Breaking threads of recognition

Trevor understands that a period of lockdown and measures taken to stop care home visits were necessary.

But like many other families, Trevor wants to know what will happen next.

'I feel resigned to the fact that the situation is out of my control, which is definitely a first for me as a carer.'

'Lockdown instantly disconnected us.'

'I know the staff at the care home are doing an amazing job looking after the residents.

'However, if the lockdown continues for many more weeks – and this is quite probable – then I fear that the thread of recognition could perhaps be irreversibly broken between my wife, myself and all our family and friends.

'The Government still seems incapable of considering the complex nature of dementia and the potential devastation further lockdown could have on people living with the condition and their families.

‘I am so grateful to the care home, but this isn’t just down to them. The Government needs to step up.’

Keeping in touch

'When lockdown began, I asked for a process to be put in place so that we could be in touch with Yvonne.

'The care home manager actioned this and all loved ones can schedule weekly Facetime, Skype and WhatsApp video calls. This works for now, but it is not sustainable for Yvonne’s condition.'

Trevor and Yvonne on a four-way video call with family

Trevor and Yvonne on a four-way video call with family

'At my request, the care home manager also implemented weekly Zoom meetings with all primary loved ones for residents.

'In terms of staying in contact and knowing what’s happening in the care home, this is probably as good as it can get.

'The care home manager can’t be solely responsible for offering and finding solutions.'

'Lockdown easements and planning continue to be underway for just about every group of people. Government are yet to give any guidance on what happens next in care homes.

'Regular testing of all residents and staff at the home would provide me with a degree of reassurance that the virus will be kept at bay and that a second spike won’t occur. The country’s leadership are the only people who can enforce this.'

An urgent need for Government action

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 like Trevor and Yvonne. Will you stand with us?

Sign your name
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26 comments

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My Mum is in a Care Homes UK I leapt for joy when Boris announced last week that care homes would allow visits. At last I thought I can actually go and see my Mum who not only has Lewi Body Dementia but Parkinsons as well. I have struggled as My Dad her husband has been kept away from his wife (50 yrs of marriage) and the elation we felt when we were told that Boris wanted things to change and that Matt Hancock also announced,"People living in care homes in England will soon be allowed to have loved ones visit them inside their residence, so long as the facility has been made Covid-secure,
Matt Hancock acknowledged "people are yearning to see their loved ones" and said announcements will be made in the "next few days" setting out how safe visits can occur.

"There'll be more details soon, but I think that people are yearning to see their loved ones and the residents of care homes get so much from visitors," Mr Hancock told ITV News Political Correspondent Paul Brand.

"It's been a very, very long period and that period where there hasn’t been any visiting to care homes, that’s coming to an end very soon." I was so excited to think finally we could go and see our relatives and spend quality time with them. Not the case it seems. Care homes are still limiting visits Monday to Friday only and for 30 mins only. Sometimes it takes my Mum over 30 mins to hold just a small conversation, she doesnt understand why we are not there any more. It would be cruel to her to go for 30 mins and then leave . I live a 3 and half hour car drive away from my Mum and would love to visit but I am still working Monday to Friday and during these difficult times need to be in the work place as well so it is a very difficult thing to try and balance.

I have tired to talk to the home to arrange a visit on a Saturday where I am told that the nursing homes cannot or will not provide Saturday or Sunday visits for families.
This makes what Boris said an absolute farce. My Mum has deteriorated without the constant daily visits from my Dad and interactions from other family members Each weekend. She has stopped communicating and trying to do a zoom meeting is just too hard. She doesn’t understand why we are not there.

Am I alone in this or are other families also feeling the harshness of still not being allowed to see family members.
I dont know if you can help at all but I am sure I am not alone with this continued frustration. If I wanted to see someone in Prison I would get a much better opportunity. The care home my Mum is in charges high rates and should be fully staffed yet they are keeping us away. I would love to start a families blog or something as I feel alone with all this Care Homes UK are keeping us away so if anyone feels like me I would love to hear from you. we have to try

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I totally get where you’re coming from... half an hour visit once a week and no spaces left this week cos we were told we have to book 2 weeks in advance. I also work 5 days a week and am 80 miles away ! My father has been there for 3 months and we still havent got a copy of his assessment as he’s self funding... he feels he’s not long for this world (94) and cries on the phone... now for his last wish, he’s begging me to take him to Scotland for a holiday but the home has told me they’re not going to allow it. I said he can isolate for two weeks on his return and it will just be me and him. Mum wouldn’t allow it either... now i’m looking to put him in a different care home when we come back.... so stressed😟!

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Hi Nicky Im suprised no one replied to your post, there must be loads of us. I feel exactly like you and its so stressful. The guidelines made everything much worse and theres no end in sight. My mum pays nearly 1k a week and Im really worried about the lack of transparency now. Unfortunately the c/home manager is not at all helpful. It feels as though they prefer to keep relatives at arms length now as its easier for them and as the government have give the homes and managers all the power, I wonder if they will ever feel motivated to open up properly. The fact it has gone on so long is really terrible. I do hope you have managed to arrange some contact with your Mum. Would be interested to know, if you get a chance to update. . Take care..

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You are echoing my sentiments exactly Nikki. My mum was only in a care home for 1 week before lockdown began. She is in a large care home with a lovely big garden but we are still only able to have visits through a small gap in a sash window next to a noisy road which makes it even harder to talk to someone who is already confused with Alzheimer's. We have been told they don't think mum will understand social distancing so can't have garden visits. We have had to push for regular phone calls and these have to be booked Monday day to Friday between 9 and 5 pm, which is difficult when both me and my sister work full time. When I arrange my day to be at home for phone calls they often don't happen at the correct time. We have been told the home is not likely to get back to normal until a vaccine is found. We feel really powerless and need our voices to be heard. . Also,I'm not sure giving care home managers the final decision on opening is a good idea. It is a massive responsibility that many will be petrified of making. Government guidelines need to be very specific to protect them from potential litigation but also protect our loved ones human rights and right to a family life. . In the meantime, more funding for staff to help with visits and keeping in contact with families may help? Does anyone know if there is a specific campaign for pushing the government to find a safe strategy for opening carehomes. ? We have written to our MPs but can't find much on the internet relating to this.

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My dad is 94 and in a nursing home for the past six months all I can do is knock on his bedroom window this thankfully is ground floor and wave at him and blow kisses. He spends days in his bedroom due to Covid and I see the sadness in him he feels like he’s locked in. We used to go out for a drive twice a week into the countryside he so loved it. When will it end all I want to do is hug him and see him smile again.

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It is heart breaking the ignorance around dementia and the sheer lack of humanity shown to the elderly in Britain. My mother's care home was brilliant but the management changed and the home has become corporate and institutionalised. My mother's dementia is in late stage so she needed 'less stimulation' so her quality of care dropped significantly, becoming more like warehousing. I have a background in cognitive neuroscience and health care so can say categorically more stimulation, albeit different stimulation is needed, not less. Due to my background I picked up on my mother's dementia type and finally after, many, many letters requested a specialist to confirm my thoughts on this. The type of dementia she has affects all her autonomic functions including swallowing so I spent many, many hours feeding her and bringing food in I knew she liked.
Partly because of the poorer care I decided to move her back home for her last months, possibly years. The sofa was moved out for the equipment to come in then COVID-19!!! I was blocked from taking her out and the care home locked down. The last date I saw her was Friday, March 13th. I 'booked' to see her for the first time on July 23rd, as the care home was opening back up, approximately 19 weeks ago. I fear because she is 'too slow' eating and I can not visit and feed her, she will have lost a lot of weight. Then on July 22nd I get a call stating my visit has been cancelled. I was furious! The reason given, one staff member had COVID-19 like symptoms so out of "an abundance of caution" everyone was going back into isolation. I considered this completely over the top. I have my own PPE, respirator, gloves, goggles and a plastic poncho and the home has tests so people should not be incarcerated as my unfortunate mother was over Easter, when they didn't have tests. Her type of dementia will always cause COVID like symptoms. The worst part is, this care home has a lovely garden that can be accessed without going into the care home. I can't take her out of the care home, nor visit her in the care home and unfortunately in a few weeks time I will have to leave the country to sort out affairs. This is truly, an abysmal time for my mother who said to me "I don't care what they do to me as long as you are there" and I am NOT!!!! I am sure many are dying of broken hearts not COVID.

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My Mam and Dad were moved into a Care Home on a temporary basis in January, due to Covid they have remained in there ever since. Dad had a mild case of dementia and Mam was diagnosed with anxiety and depression due to this and not being able to cope. Everything was fine prior to the lockdown we could visit whenever we wanted. However since March we haven’t been able to visit apart from a few visits outside talking to them over the garden wall. Dad sadly passed away in June, which has been devastating for us all. He was admitted to hospital and we were allowed to visit there as long as we wore masks but it’s been very hard for us. They have been married for 61 years. The care home have been very good since this happened, allowing me to see Mam as long as I am wearing all the PPE but only this week are now saying that I can only visit Mam in the garden and talk to her over the garden wall. Yesterday I planned to visit however it started raining so the visit was cancelled and I wasn’t allowed inside to see her. This is unacceptable, she needs her family more than ever during this time. It breaks my heart, I am POA for Mam and always have her best interests at heart. I’m so worried about her. Things have got to change!

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When are the government going to get their act together and finally realize that just seeing care staff, day in, day out, without talking to relatives and friends, is going to kill care home residents a lot sooner than the actual virus itself? It's deprivation of liberty and mental abuse. Fear-mongering is all good until people become tired of the same clap trap repeating over and over. Seems like it's not going to end. I can't help but imagine the absolutely huge backlash the british government are going to get from the british public over this. As long as we wear masks while visiting care homes, then there shouldn't really be any "problem". Maybe it's just me but I have a really grave feeling about what could actually be behind all of this care home visiting ban. And if it turns out to be exactly what I think the actual reason is, then I'll be so disgusted with them. Care staff will never be enough to keep care home residents going. This is why they quickly deteriorate without seeing personal family and friends from the outside world. It's soul destroying. They can't just be expected to look all happy or to be having a good time during lockdown. We are talking about care home residents mental wellbeing. What are the British government even doing anymore? I despair. Just last week I heard on the news that care homes were going to reopen their doors to visitors. A week later they still haven't. Tell us lies. Tell us sweet little lies :/ Another thing that makes me laugh, is the government opened up the bars and restaurants and then closed them again. Just wow. And I thought CRIMINALS were bad. They seem okay in comparison. I jest ;) It's just so frustrating. So much for "Happy New Year".

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I totally agree. Care Homes are essentially businesses no matter how good their reputation is. Care staff keeping residents safe during this pandemic, which we are all very grateful for, is not the same as understanding the heartbreak that a resident is going through having lost contact with loved ones for so long, only a family member would understand their sadness. No resident really enjoys being in a care home it will have been their last option due to frailty with the only enjoyment being family visits to support them. Every resident is different too and some will be far more challenged than others during lockdown. Take a person who requires help with mobility and is hard of hearing, lip reads and can understand a lot of what is going on but has difficulty in expressing themselves due to dementia. Carers haven’t got the time to spend chatting or dealing with a case like that as they are busy with a number of other people to care for. FaceTime family calls don’t work where there is hearing difficulty. Then put that resident on the second floor where they cannot see loved ones through the window! More recent 2 metres apart garden visits only work for residents without dementia and hearing issues because they can’t lip read through a mask or understand why there are no hugs etc. The care home I refer to has remained COVID free to date. Our relative who has had two negative COVID results returned at the home following an infection was still isolated for14 days in their room. During recovery in isolation they became worryingly ill reaching code red level so we were allowed a direct visit wearing masks and having a temperature check etc. As soon as our relative saw us they rallied immediately and remained totally elated because we were able to hug and touch while we were allowed 30min daily visits for 5 days. That proves how vital family contact is. Now our relative has recovered to code amber level the direct visits have been stopped and we are only allowed garden visits. So our relative won’t understand what is going on and will start to deteriorate again. Hopefully they will have the strength to remain well. Sense needs to prevail soon in this sector to allow direct family visits wearing PPE or even allow a family member to have a COVID test and be given key worker status for their relative with dementia before that relative is lost and becomes a LOCKDOWN rather than a COVID statistic.

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It seems bizarre that all focus is on getting people back in pubs and restaurants!!!!! The focus should be in ensuring our loved ones get the love and support they so desperately need at this confusing and horrendous time. We try to console ourself by saying ‘ Well ... They don’t remember anyway, They were confused and unhappy at home’ but the reality is they are still human beings in need of love and the touch of a loved ones hand.
I think we shut a few politicians away for 4 months with no contact to loved ones and little access to the outside world. It’s a scandal......

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I agree with you, Patricia :) Four months isn't long enough to make the government stay in their own homes. I think make them do a lockdown for five years. Let's see how THEY cope with it? I don't want to become a country like Japan where we mainly rely on technology and robots. The elderly are always feeling left out because of social networks. Elderly care home residents wouldn't have a clue about technology and social networking.

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My mum is 56 and has early onset Alzheimers and is in residential care. I have seen a decline in mums mood greatly and she says she hopes God takes her as she feels she is in prison. I can't begin to imagine how it feels to walk the same corridors endlessly trying to pass the time and not be able to do anything outside of the same building for months. I guess it must be like prison for all of them. Mum is still mobile and has times when she is very lucid so she gets why she is on lockdown but also asks me to contact the government so they can do something to get her out. It's hard hearing her say she wished she was dead but I'm not able to do anything other than bring her gifts and see her through the window. When she loses things she gets upset and I can't help her find them as I used to. I feel like I have no visability on her care at all now, daily phone calls last a while with mum telling me what troubles she's had that day and that she doesn't understand why she cant have a normal day. I am glad she is safe but I really feel something has to be put in place to have some light at the end of the tunnel. At least then it would provide some comfort to family and residents of residential care to know that good is coming and we can hug each other and comfort each other once again.

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Hi Jazz,

Thanks for your comment, we're so sorry to hear about this situation with your mum.

This sounds really difficult for you. If you ever need some more support, please know that you can speak to one of our trained dementia advisers who can listen to your situation and provide ideas, advice and support. Please either email [email protected] or call our Dementia Connect support line on 0333 150 3456. The support line is open seven days a week:

9.00am to 8.00pm Monday, Tuesday and Wednesday
9.00am to 5.00pm Thursday and Friday
10.00am to 4.00pm Saturday and Sunday

We also have some information on our website that you may find helpful - including pages on keeping in touch with somebody in a care home during coronavirus, and supporting somebody with depression or low mood.

https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/apa…

Hope these are helpful, Jazz, and remember the support line is there if you'd find it helpful to talk to somebody.

Alzheimer's Society's blog team

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My mum is 97 and has dementia. She had a fall in her care home on Sunday & broke her hip. She was sent to hospital in pain, alone and we are still not able to visit her. Even after a hip replacement operation. The hospital has a no visitors policy. She is deaf and very confused . She will wonder why no family are visiting her. This situation is a disgrace. I haven’t seen my mum for 4 months. Residents in care homes have been forgotten.

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My mum is 98 and been in a care home for over 3 years, we are a very close family and visited mum every day she hasn't always received the best care but we were able to monitor that and report our concerns but now as the home has been in locked down since March 19th we can no longer do that but are assured by the staff when we ring that mum is ok ? We have tried Skype but mum doesn't understand and she gets upset so we don't do it anymore so just relient on us ringing the home. Mum has been put on end of life care during the lock down and we are desperate to spend time with her. The government need to prioritize the care homes , we need to see our loved ones while we can.

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There was an uproar in America when ppl stood by as George Ffloyd was killed,as he cried out”I can’t breathe” yet I literally have to watch my mother”dying “ a little EVERY time I visit thro a care home window.cos she doesn’t understand WHY I’ m not helping her with this decease,as I normally do.When will the govt understand she is MORE at risk of her health deteriorating thro this,than the risk of Covid.HOW MUCH LONGER ??!!!

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Hi Linda. I keep wondering MYSELF about how much longer this care home visiting ban is going to go on for? It's all very well mentioning that care home staff are "trying their best to take care" of care home residents, but this visiting ban will leave a huge mental scar in care homes residents mental wellbeing. Only seeing care staff for months on end, isn't enough to keep a care home resident content. It's just so patronizing how care home managers think that as long as their staff are there, then the residents don't exactly need to see family and friends physically. I find it very worrying. Even though care homes are getting a lot more credit during lockdown, I can't help but wonder. Care home residents need their relatives and their friends. I bet they're so tired of seeing the same old four walls of their care home. It's like psychological torture.

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As all the above I feel exactly the same, my partner of 30 years had only just gone into a care home about 3 weeks before lockdown.
I was struggling with the loss of her being in the care home as I have been her main carer for many years, but now it is worse.
I have just visited her, as we are allowed to visit and see each other through the fence she is brought out into the garden, she looks lost and empty, I cry every time I come away, I so much want to hug her and make things better.
She struggles to understand the lockdown, I keep telling myself at least she is safe and being looked after, but until that day comes that I can hug her I will always cry.
This government has a lot to answer, over the last week not One mention about care homes, everything but and we are talking about peoples lives here and their mental health.

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Our mum has been diagnosed with Alzheimer's for about 10 years and in residential care for 4 years now. My sisters and I used to visit everyday, and as her conversational skills, hearing and eyesight deteriorated, physical contact was important and calming for her.
Since lockdown she has gone downhill quickly. Never has she looked so sad. For the last two Saturdays, we have allowed to visit her in the garden. But she does not understand why no contact, is afraid of PPE, and constantly tells us of her crying, and that she wants to die now. When we leave she tells us we are being horrible to her. It's absolutely heartbreaking. X

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Can you imagine what it is like for someone who has young onset dementia and has to be on their own, no contact from family, no contact from carers and no help from organisations like you, it infuriates me that not only has the government let us down but so have organisations like yourselves, everyone in the country who has dementia should of had some support during this time

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Hi there Lorayne,
Thanks for getting in touch. We're really sorry to hear you've been let down. We completely understand the infuriation when you're not feeling supported.
Please be assured that all of our conversations with government address the varying challenges that people affected by dementia face. We are always looking for a variety of experiences to inform our support services and influencing work, and to raise awareness on the experiences of all people living with dementia. If you would like to be involved in this, please email [email protected].
We also recommend that you call our Dementia Connect support line on 0333 150 3456. That way, our advisers can fully understand your situation and provide you with the support you need. Here's some information about our support line and opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
We hope this is helpful, Lorayne.
-
Alzheimer's Society Campaigns team

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Hi I feel the same mum has got worst. We only have call in the 12 weeks mum fell and ended up in hospital with fractured hip and collor bone her condition has got worst she now back in care home and now thinks I don't want her anymore and don't love her anymore she's forgetting ppl in the family and can't remember my father's passing she think he's still here. We need some proper contact my heart breaks I can't see her. I have heard the decline in her voice everyday I know this is done for a reason but I m pooiss her very much from 5 days a week contract to nothing

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Hi Trevour .I know exactly how u feel.My dad is in a nursing home and I haven't seen dad for 11 weeks now.its breaking my heart. My poor mum is just about bearing up.Dad has severe vascular dementia which means that he cant do anything for himself.The only thing he can do is talk even though very confused....The longer the lockdown goes on the harder it gets for me and my mum..The nursing home I feel hasnt really helped us to be in contact with dad.We have to ring and they put the phone to dads ear so we can talk to him.We always feel a nuisance as we know they r busy .....Dad was 80 on the 4th june so I asked the manager if mum and I could go into the carpark which backs on to the garden and for a carer to wheel dad into the garden so we could see him.Luckily she agreed so we got to see dad for the first time in 11 weeks.It was so emotional to see dad but he wouldn't open his eyes or speak,I don't think he really knew we were there..mum.used to visit dad 6 days a week and I would go 3 days a week when I wasn't at work.I feel without the special 1 to 1 with the 2 of us dad is deteriorating very very quickly..Dad needs us now more than ever.i just hope he dosent think we have abandoned him as he dosent understand why we cant be with him.Its tearing me apart not seeing dad.Hes already on borrowed time and j just want to be with dad. I feel that as long as we r wearing PPE mask and gloves we should be able to visit dad as the lock down eases .I would never put dad at risk and I would wear anything to be with him...Reading other peoples stories makes me realise that I'm not alone .It was hard enough watching dad deteriorate but not being there for him is even harder.......

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Hi Trevor
I totally sympathise and understand how upset and frustrating is not being able to see a loved one.myother is83 years old and has Alzheimer's at present she still recognises us on facetime X3 times aweek slots which have been allocated to me.I wanted to see her everyday but was told X3 was all they could manage.I fear by the time lockdown is lifted in care homes she will no longer recognise us.On the last 4 facetimes she has been upset and tearful which is distressing for us and she then starts to stroke the screen to comfort me! my mother's care home is beautiful and has large grounds and garden where social distancing could be carried out quite easily with safety for both mum staff and my family. But I have been told that can't happen and we are now waiting for an area to be built with a perspex screen before any visiting can be allowed.And then it is being allocated in 15 min slots.I am devastated at not being able to see my mum I use to visit her everyday and spend many hours with her.It feels like the care home is becoming like a prison and not her home .what happened to human rights ? I am her POA and have always acted in her best interest but now feel helpless as Trevor says all control as herong time carer has been taken away.When are the Government going to listen and do the right thing to reunite us with our loved ones.Maybe they should invest as much time into achieving that as they are in getting pubs and clubs out of lockdown!!

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I haven't seen my mum for 10 weeks. We have waved once through a window at the beginning of lock down and she had no idea who I was then. We have written letters and little presents. It breaks my heart that she will have drifted further away. However, she is safe and she is still my mum .

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