Tony and Pauline Claydon

Caring from a distance – ‘I fear I might never see my wife alive again’

Being separated from a loved one with dementia is particularly difficult when they have no way of understanding your absence. Tony and his wife Pauline, who has dementia and lives in a nursing home, have been kept apart because of coronavirus.

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.  

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. 

A virtual presence through video calls 

Tony used to visit Pauline almost every day, but he hasn’t been allowed to be with her since the beginning of the coronavirus lockdown in March, this year. The care home hasn’t allowed 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, ‘I am really worried about Pauline. I worry that she will feel alone. She won’t understand what is going on. I know she is not eating as well as she normally does.  

‘She is just distressed. And I am not there to reassure her.’ 

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

These have been 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 are only occasional, and are becoming fewer as the weeks under lockdown pass by.  

He believes that hard pressed staff simply 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.  

Tony says he would go to ‘any lengths to protect Pauline’ should he be allowed to visit her in person.  

‘The worst thing is that I think there are solutions that could be put in place. I think that with some common sense and proper risk management, I could see Pauline.’ 

“I could wear protective clothing. I could see Pauline in the garden, and not have any contact with staff or any other residents. I don’t even need to go inside the building. I know it would make a real improvement to her sense of wellbeing – and mine!'

Understanding the reasons for the ban doesn’t make it any easier 

While Tony understands the reasons for their separation, the plight of people living in care homes is constantly on his mind. 

Tony was asking for proper coronavirus testing in care homes within a week of the lockdown beginning. He was worried that people in care homes were simply being forgotten.  

‘People in nursing homes with dementia often have multiple serious health conditions. They are vulnerable to the virus hitting fast and fatally.’ 

Tony has been observing the lockdown very strictly and is concerned that care workers who regularly use public transport present more of a risk to Pauline than he does.  

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This feeling is made worse given the universally acknowledged lack of adequate testing and personal protective equipment (PPE) for care homes.  

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

Fighting for change 

A large number of care home residents have died because of coronavirus. Following successful lobbying by Alzheimer’s Society, the daily death rate now includes care home deaths.  

Tony is glad that the government have changed their policies, and that care home residents are now being recognised as important. 

But even though those improvements have happened, he still worries about the future. 

'What is the policy for lifting the lockdown in care homes? Will visitors go in one at a time? Will we all have our temperatures be taken? 

'I am happy to do anything to see my Pauline again. But the government haven’t said anything about the rules for care homes over the next six months. 

'I feel like once again, they won’t do anything unless they are pushed into it.

'That is why we need organisations like Alzheimer’s Society to campaign. So that people in care homes, and the people who love them, can cope in the face of this awful virus.'

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22 comments

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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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I have been facilitating meetings so relatives can see their loved ones but it’s via a window and masks are worn .The reassurance is heart warming but emotionally it’s tough not to hug and also the mask is a barrier. However relatives and residents are reassured .

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I so sympathise with all these people. My mother had Alzheimers and lived in a care home....I would visit as often as possible - usually twice a week and she still recognised me and always said she lived for my visits. I went to see her on 23rd March before the care home locked down but could not bring myself to tell her it would be 12 weeks before my next visit....she would have been so upset. I knew I wouldn't be able to communicate virtually with her as her sight and hearing were not good enough for that. Then, 3 weeks later, I got the dreaded call to say she had passed away...........not from the virus but 'natural causes'. I suspect she felt abandoned and gave up........I will never know for sure. I am just so sad not to have been able to be with her and say goodbye....................and suspect I am not alone.

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I have been through this! My son and I said goodbye to my wife in March just before lock-down began. We had separately realized that this might be the last time we saw her alive and so it transpired. She died on 18th May. She was diagnosed with Alzheimer's in 2009 at the age of 64. She entered residential care in August 2014. She had been in the vary late stages of the disease for some months when she died. I used to visit every day to feed her lunch and she would usually react to my voice, chattering wordlessly, nodding her head and sometimes chuckling. She did this a couple of times on video calls in the past few weeks. I would have been allowed to visit during the last days of her life but as I am shielding I was not allowed out.

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I empathise with everyone who have posted comments. My wife has dementia and went into a Care Home in early March. She was then transferred to a mental hospital to help with her condition. I do have video contact with her and this does give some comfort but have not otherwise seen her for three months. The staff are excellent and no complains, I just miss being with her and having a proper discussion. It is also upsetting that we celebrate our Golden Wedding anniversary tomorrow (June the 6th) and will be apart.
I fully understand the reasons for not being able to see her and have great support from family and friends but she is always in my thoughts and feel helpless.

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Whilst I can fully understand all the points that have been made, I would like to give a very positive point of view about the care home my husband went into only one day before lockdown began. . It was unexpected move but I had no choice. I had 3 hours to explain to my husband as much as I could and like others I’ve not seen him since that day. However, the staff at the home have been amazing helping my husband settle in. To begin with he was distraught, phones calls all day wanting to go home. It was so upsetting for everybody but gradually with the staffs’ kindness he now is happy, he has activities, company, a garden, all things I could not provide. I write an email letter to him each day, he FaceTimes me when the staff can arrange it and no it’s not an ideal relationship but I thinking that as long as he is settled and happy, my feelings are irrelevant. The staff have so much to do without having to worry about visitors. I realise I’ve perhaps been very fortunate but I cannot criticise my care home at all.

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I am in a similar situation, my husband went into a nursing home with dementia in November 2019, that was very hard but at least I could visit most days which helped me considerably. I have not seen him since March 15th and sometimes feel desperate to see him. Zoom calls are difficult for him and I feel I have lost contact with him. I am so concerned he will forget who I am. We lived together for 51 years.

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My mom 86 had dementia and fell 4 weeks ago at home where we were cocooning her, she had to go into hospital, my mom went in ambulance all on her own as we were not allowed to go with her or visit her. As she was used of me and my sister caring for her every day when she went into hospital she died 4 weeks later and not from covid but I firmly believe it was from the isolation of not seeing her loved ones and not knowing what was going on. Through totalling fighting I got to see my mom the day before she died as she was in a private room, at that stage she was unconscious . It breaks my heart that this pandemic took the last 4 weeks of my moms life from us and I will always be bitter about this. Feeling heartbroken 💔

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I feel exactly the same and maybe worse as my mum was only just settled into a care home just before lockdown . She must feel we’ve abandoned her , it’s awful to not be able to see her , we tried video calls but she couldn’t understand it and talked about us to care home staff as if it were a photo . So all we can do is a 2 minute phone call every day , short because there’s no 2 way conversation , she says yes to every question and we run out of things to say . Sometimes she doesn’t hear or understand and sometimes she asks what time am I coming , it’s heartbreaking !

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