Tony and Pauline Claydon

I have key worker status – why am I still being kept from caring for my wife?

Tony and his wife Pauline, who has dementia and lives in a nursing home, were kept apart for over three months because of coronavirus. Even as the Government opened care homes to socially distanced visits, these types of visits don’t suit Pauline’s needs, nor do they acknowledge Tony having key worker status to support her care.

Tony Claydon bristles with pride and love when he talks about his wife, Pauline. They have been married for over 49 years.  

Pauline, who has young onset Alzheimer’s disease and now lives in residential care, first showed symptoms in her late fifties.

During lockdown, they were kept apart for over three months. There should have been so much joy as the Government announced that care homes could open to visits, if done safely and with the guidance of the local authority.

Sadly, this isn’t working for families like Tony’s. His wife’s care home allows social distanced visits, but these types of visits don’t suit Pauline's needs. 

'I worry about Pauline all the time now'

Tony has been supporting Pauline for twelve years and is her most dedicated advocate. He would help her with everyday tasks, such as feeding and drinking. 

Tony used to visit Pauline almost every day, but he wasn't allowed to be with her throughout the coronavirus lockdown that began in March, this year. The care home didn't allow access to anyone except healthcare professionals. 

Pauline had a stroke four years ago. Currently, she cannot walk or talk and is blind in one eye. She needs to be manually turned in the night, and a hoist is required to help her from bed. Tony is the only person Pauline really responds to. 

Tony says, ‘During lockdown, I was really worried about Pauline. I worried that she would feel alone and that she wouldn't understand what is going on. I know she hasn't been eating as well as she normally does. I worry all the time about her.'  

Families need to be able to stay in touch

Despite some technical challenges, Tony managed to place some video calls to Pauline with help from care home staff.  

These were some comfort to Tony, as Pauline responded to his voice and gave him a signal to say she could hear him. But he says those reactions were only occasional and became fewer as the weeks under lockdown passed by.

He believes that hard pressed staff simply didn’t and still don’t have the time to give the personal attention to residents that relatives can. And that 1-2-1 care is vital for resident’s’ quality of life.  

'Socially distanced visits don't work for Pauline, or me'

Tony was given key worker status as his role in Pauline’s care is considered vital. However, this hasn’t made a huge amount of difference, and socially distanced visits are not a solution.  

‘I am not allowed to hug my wife or give her any of the personal care she needs from me. I am restricted to having to keep three metres from Pauline when I do visit.’ 

Pauline is unable to raise her head and can’t engage with Tony without the power of touch. He tells us that visits are therefore 'emotionally painful'. 

“When will my key worker status be recognised?”

Tony knows that at first people were asking to “see” their loved ones, but he believes it is more about needing to “be with” loved ones for the sake of their wellbeing.  

He told us: “When I ask the care home why my key worker status isn’t acknowledged so I can be near Pauline, I am told that they haven’t had the go ahead from government which doesn’t make sense. That’s why Alzheimer’s Society’s calls to local government are so important. Visits should be implemented with consideration to individual needs.” 

Our dementia advisers are here for you.

Fighting for change

National guidance announced in July advised that local government should work with care home providers to establish safe methods to reopen to visits from loved ones. The guidance says visitor policies should also consider the specific and varying needs of individuals. This doesn’t appear to be happening, keeping so many families affected by dementia disconnected.  

We have developed key recommendations that we need local authorities to take into account when supporting care homes to reopen so that families like Tony’s can be connected.  

Our key recommendations are: 

  • Family or close friend carers must be seen as equal partners in the wellbeing of each resident. 

  • Ways of staying in touch with care home residents must always meet individual needs, despite potential future periods of lockdown.  

  • Regular and clear communication with families about their loved one’s health and wellbeing are vital. 

  • Active consideration must be given to understand on what basis residents should have more than one more designated family visitor to meet their individual needs and that is appropriate to family circumstance. 

‘I seriously think there is a chance that the last time I helped Pauline, before the lockdown, could be the last time I ever touch her.’ 

Coronavirus has disconnected too many families affected by dementia. As care homes look to re-open safely or should they face a local lockdown, families must be more involved in the care of their loved one with dementia. Our recommendations to local government can make this possible.  

Ask your council to commit to better connecting families affected by dementia during Covid-19. 

Stand with us to support Tony and others

Join our campaign to hear more about how we're supporting people with dementia in care homes and how you can help.

Join our campaign
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34 comments

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I see all these tragic stories about the impact on people suffering from dementia in residential homes but I do not see any action. My husband is in a residential home he has suffered a great deal of harm because of the LOCK DOWN imposed by people who have no idea what they are doing. I can tell them what their inhumane policy is doing it's breaking our hearts there would be public outcry if animals were treated like this. Human rights they have none. Writing letters of complaint does not work I have tried that. No more pieces of paper please let us get together and stop this senseless banning of visiting we are the only lifeline these poor demented people have. let us band together and hold Matt Hancock and the rest of them to account

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My mother is in a care home in Harrow. It is excellent and she is really being looked after. But I have to see her half an hour in the garden and in the care home hairdressers. Also, as is the case with dementia, my mother cannot now have long conversations so trying to have a half hour conversation at an appointed time really does not help.

We were allowed a couple of visitors at a time but now we are only allowed one visitor and an email has stated that it should be the same visitor if possible. I live closer to mum, my sister lives in Brighton and is distraught that she now cannot now see her and my mum's memory will fade. My sister has been tested three times owing to her job so I will ask if we can alternate as before.

I wrote to her MP and included the LHA note that suggests getting a delegated family member to be able to have greater access. The MP was very interested but unfortunately has passed it on to Matt Hancock. I'm afraid I cannot go into what I think of this man without using very bad language so I will go no further!

I have constant anxiety - I wake up in the morning with it and it's there all day.

I have heard that Helen Wildbore of the Relatives and Residents Association and a All Party Parliamentary Group are looking into this problem. So I will write to them.

Can I also say that my heart goes out to all those people who are struggling with this. I've heard so much anguish from people who have relatives in a much more desperate state than my mum. She is well looked after and incidentally her chest infections that she kept getting have kept at bay.

The carers took her to the care home hairdressers and she had her hair done, she's had her feet done and had her meals in the dining room. Before she refused to go there. So I am grateful.

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Hi Carolyn,

Thank you for your comment. It’s such a difficult time for families with loved ones in care homes right now.

If you or your sister would like any support or advice, please know that we’re here for you. You can call our Dementia Connect support line on 0333 150 3456 and speak with one of our amazing dementia advisers.

You may also like to sign up to our online community, Talking Point, if you haven’t already, where you can speak with others going through the same as you and share your own experiences: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

Best wishes

The blog team

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My father has been evicted from his care home. They say that they can no longer meet his needs. The needs that they have stated have always been present, the only change is that the family are not providing 1:1 every afternoon. The home have never had to care for him 24/7 until lockdown. He has had three mini strokes and four falls during lockdown and we were not allowed to see him. Communication has been poor with no updates re his health & wellbeing unless we asked them and then they made us feel we were making a fuss. When we asked adult services when they would be opening the home to visits tbey said it was a matter for public health not the local authority which contradicts the current guidance. Neither the home nor local authority seem to have any compassion or understanding for what famies are going through at the moment. My mother and father have been together for 70 years and not being with him for more than six months is breaking her heart.

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Hi there Helen,

Thanks for your comment. We're really sorry to hear about your father's situation - this must be a very stressful time for you and your family.

Please know that you can always call our Dementia Connect support line on 0333 150 3456 for more information, advice and support specific to your situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

In the meantime, you may find this magazine article of interest - 'Evicted from a care home: What to do if a person with dementia is asked to leave' - there may be information here that could be useful: https://www.alzheimers.org.uk/dementia-together-magazine-dec-19jan-20/e…

We hope this is helpful,
Alzheimer's Society blog team

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We have just had to put my father into a care home . As we have not been allowed to visit he feels we have abandoned him . After 65 years of marriage my mother is racked with guilt. He has lost mobility due to being bed ridden for 8 weeks in hospital which is why he’s had to go to a care home. When He has spoken to my mother on the phone he has become very abusive and keeps repeating that we have abandoned him and that he is so lonely . The feeling of helplessness is overwhelming for me and my mother . We can’t even get the dementia assessment we need so that he can get some medical help. The whole situation is so difficult for him and us and no one seems to be addressing the problem.

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This has got to STOP it is barbaric and cruel beyond belief. The powers that be must BE inhuman aliens. Who are they making these rules, THIS MUST STOP.

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Both my Mum, who is 90 and my Brother, who is 63, live in the same care home. They are both suffering greatly by the total lack of any support from family. The care home staff have being doing a great job, but they are not their family and cannot give them the love and support they so desperately need. In my brother’s case, I am his voice, as he does not have capacity, after a road accident when he was a child. He is distressed and confused, we used to visit every day, now he won’t answer the phone to me, because I don’t go - he doesn’t understand I am not allowed to. My Mum and him were on separate floors, but it was decided 4 weeks ago the floors had to be kept apart, so this meant my Mum had to be moved downstairs in order that they could have some contact with each other, obviously this move has caused her upset. What is happening to our loved ones is cruel and heartless, they are locked away like “prisoners” left to deteriorate further, both mentally and physically. They are allowed no personal services, the hairdresser has not been allowed in for over 6 months, and it was only after I made a lot of fuss that they finally allowed a chiropodist in 2 weeks ago, to cut their nails and give foot care which many elderly need, mine were both in pain from the lack of this service. Why cannot the government, local authorities and care homes manage to set up, after 6 long months, a safe system where one relative could see their loved one, tested, wearing PPE, for a pre-arranged visit at least once a week - why is it so difficult to arrange this? The care home owners are still getting their huge fees from us, and many emails and phone calls with my families care home head office, leaves me feeling, that as long as they are getting their money they feel under no pressure to make the representations they should be doing to ensure that our loved ones, we entrust into their care, get the contact they so desperately need with their families. Time is not on their side and for many it will soon be too late, and there is no end in sight to this dreadful situation they and we are facing. I have made representations to my local MP, Councillors, Local Authority Officials and The Mayor of Greater Manchester, but have made little progress. Tomorrow I intend to contact the local and national press and the TV., in the hope that they may give more publicity to what is happening in care homes because someone has got to be made to listen and act on the plight of our loved ones who are now so isolated in their care homes. It’s good to know we not alone in this, as it is a situation that makes you feel so helpless.

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I feel your pain. My husband has been in a care home for over 3 years, during which time I had been able to visit him and be involved in his care every day. Not being able to be with him since March is excruciating for me and confusing and distressing for him; he has been my best friend since we were 14 years old. When he was diagnosed I told him I would be there for him until the end. Given the reported capacity for coronavirus testing, which seems to be greater than tests done, I dont understand why regular tests can't be extended to people like myself in order to allow me to resume supporting both my husband and the overstretched staff at his home.

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Many care homes employ staff who work in multiple settings, especially agency staff including nurses who circulate between care homes and hospitals and this must surely increase the risk of transmission of coronavirus. Therefore I would expect that there would be a minimal safety impact of granting key worker status to a small number of selected visitors to those care home residents who have a particular need for support. This especially applies to people who have dementia but also too for those who have other severe disabilities and require support. Since March I have not been able to visit a close friend who is quadriplegic and living in a nursing following a stroke. I would usually visit 4 days each week to assist with meals, drinks, physiotherapy and help with his interests to help him have a good quality of life. Such assistance is close up and hands on. Staff only have time to do basic care and he is often bored. Only outdoor socially distanced visits are permitted in that nursing home, but that is not possible due to his emotional issues. I have contacted my MP and local authority seeking support for the idea of key worker status as proposed by the Alzheimer's Society but nothing has been forthcoming.

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I am at my wit's end. Have contacted everyone I hoped could help but only received a reply from local MP who was taking it up with whoever but that was 3 weeks ago and could be a month before he hears anything. Have contacted Prime Minister, no response, Nick Ferrari (no laughing) contemplating whether it is worth trying other broadcasters. They only seem interested in GCSE results, etc at present. Have seen my husband once since March when his deterioration was extremely upsetting. Thought about local paper but feel I'm hitting my head against a brick wall. Yes, I feel sorry for the young but time is on their side. Not so with our loved ones.

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Maybe the Alzheimer's society could show all these heartbreaking stories to the BBC's news channel s and get the political editor s on board and publicised so the general public who are now enjoying lockdown measures bring eased realise how devastated we all are not seeing our loved ones still after nearly 3 months
Scotland's care homes are coming out of lockdown on 3rd July and following a strict programme of social distancing outdoor s then phased in stages indoors
Please please why can't this happen here noone seems to listen or care

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I agree with all Tony's heartfelt story and it resonates with my own story.
My mother's care home is wonderful but the chief executive.
Would not give me any good reason why I could not visit my mother in the very large garden and wear PPE
I have followed all the daily briefings and hoped the goverment would give us good news but nothing ever came.
Our loved ones are being treated disgraceful ly intact it feels like abuse and a very cruel way to treat and our families.
The government need to lockdown in care homes that are free from covid19 and let us be reunited once again .yes we understand we must social distance but I cannot bare seeing my mother behind thick plastic sheeting !! Which is what her home is using and it's very distressing.i want to see her outdoors in the garden surely if Scotland can do it on 3rd July we can !!

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My younger sister is in a care home. Major stroke 10 years ago, dementia past 4 years or so. I have always thought care home is not the right environment, but no ideal alternative, she is only 68, no meaningful speech since stroke. Pre lockdown I visited 5/6 days a week, helped with eating, personal care etc. I have been my sister's steadfast support throughout the 10 years since stroke. Care homes are never adequately staff no matter how much they insist they are. Since lockdown I managed a couple of random window visits, most unsatisfactory. On 30th May I received a call she had slipped from her chair, considering she is not independently mobile I regard this as careless at best, negligence at worst. No medical professional went into home to physically check a developing problem with stroke effect leg, until I got a look through window, and expressed concern. My call to surgery instigated ANP visit and resulted in trip to hospital fir DVT scan, xray for possible fracture. This 3 weeks on from fall! At this point it was considered OK for me to accompany her to hospital, though window visits now blocked as garden is being utilised for residents. The saga is ongoing. The way our loved one's are being deprived of family support / monitoring for this extended period of time resonates with me as nothing short of cruelty and abuse.

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I know how you all feel
I am just on a learning curve

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It is comforting to not we are not alone. I'm so sorry for your losses. This is an incredibly heart-breaking situation. And the feeling that the Government neither seem to notice nor care drives me insane. If one more friend says they know how I feel I may scream, I know they're trying to help but I just need to empathy.

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Heartbreaking does not describe it. My dear sister has Alzheimers and has been in a home for over three years. From lockdown on 9 March I have emailed weekly ito ensure she is well and receive a short reply. I contacted the owner and said that more should be done to keep relatives up to date. A newsletter once a week perhaps and not only on social media....not everyone can access that. Since then there have been a few photos (on Facebook!). Also a window to talk through. I was there like a shot, but it was a difficult conversation mainly chatting to the carer. My sister said she knew me and her niece, but I doubt it. I fear she has forgotten us.
With a husband with stage 4cancer I have resigned myself to the fact that although I try to see my sister weekly I may never see her again and my promise to always be there for her (no other family) will possibly not be fulfilled. I have no complaints about the care, but I do feel that when the doors were locked it was almost as if the relatives were overlooked. We do not need to see posts on Facebook about all the thank you letters /gifts to the staff, we know they are amazing and working in desperate conditions . We need (for our own mental wellbeing) to see evidence of our beloved relatives for whose care we are paying vast amounts of money. There are three floors and my sister is on the top floor so there is no chance of waving to her and my biggest worry is that she does not understand why I appear to have abandoned her.

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I totally get Tony's situation and empathise more than you can image as all he thinks and/or fears is true. When I was warned that the home where my very close relative resides was going into lockdown for at least 3 months, I immediately applied to become a volunteer. I felt my relative would deteriorate prematurely, mentally, emotionally and physically and the impact on both of us would be detrimental. That filled me with horror, more than the threat of coronavirus (sorry). I am on my own so could promise to self-isolate (and I am less likely to bring in coronavirus than staff members). I am fully 'protected' with face-mask, gloves and apron (changed each time after a visit to a resident). The home has no coronavirus, thank goodness. I feel very privileged that I can see residents and help where needed either with a chat, doing a cross word, enable video calls, all sorts of activities, simple physical movements, singing songs. It is energy zapping but extremely rewarding and I feel almost like saying that the disease is cruel, but lockdown and as a consequence the lack of social intercourse is more damaging. What in my opinion has been lacking in general is a holistic approach.
My comment may not be uplifting to many of you but please note that I am totally on your side and totally with you. Just a last suggestion, video calls are great but some do not understand (e.g. why is my child on TV); little notes with a photo of yourself sampling doing something (please write on the back your name and how you are related or place - a carer/volunteer may not know and it opens up the opportunity to ask the resident: what can you tell me about ....).
Sending you all love, light and peace.

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some care homes will not allow volunteers in .so suggesting you send notes / photos in no good as no volunteers to show residents this .

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