John and Lesley

'Eleven months is a long time when you have severe dementia’ – kept apart from my wife through coronavirus

John’s wife, Lesley, is living with dementia in a care home. Because of coronavirus, John has not been able to visit Lesley every day as he would usually do. John explains why he’s signed our urgent letter to the Secretary of State for Health and Social Care asking him to set out a clear timetable and process for re-introducing meaningful visits to care homes.

My wife, Lesley, and I have been married for 45 years. When she was diagnosed with dementia, I looked after her at home for as long as I could. When she moved into a care home, over six years ago, I still visited her every day to chat, have meals with her and give her additional care.

But when coronavirus hit, Lesley’s care home went into lockdown and I didn’t see her at all for more than eight weeks. Going from seeing and caring for Lesley every day, to complete radio silence has been so difficult. 

After some time, I used WhatsApp video calls to see and speak to her as often as I could. But due to her dementia, I wasn’t sure if she could understand it was me on the phone. Calls just don’t compare to seeing her in person. It really isn’t a solution for people with advanced dementia like Lesley.

'I know it’s for the best, but the hardest thing to cope with is that you don’t know how long it will go on for.'

John visiting Lesley before coronavirus

John visiting Lesley before coronavirus

After eight weeks, I was able to see her for socially distanced visits in the garden, which I was hopeful about. But these were really hard for both of us, and now we’re back in lockdown. When it is permissible I can now see her on the other side of a floor-to-ceiling screen.

Wait until May? No way

It now finally feels like the end’s in sight, but I’m concerned that the Government hasn’t clearly addressed rumours that care home visits will not take place until May due to the vaccination timetable.

When someone has severe dementia, eleven months is such a long time. As many families will understand, visits and time with a loved one with dementia becomes more and more important. 

I understand they need to keep people safe, and I am happy to be tested and wear PPE to keep everybody protected. If I did that, I would be no more risk than the carers in the home. 

It’s having a huge impact on both me, Lesley, and the wider family. I would do anything to be able to see her properly again.

Reconnecting families

Almost a year into the pandemic, I don’t want more time wasted.

I think the Government should prioritise a timetable for care home visits and provide transparency on how vaccinations impact these visits, in their upcoming plans for relieving national lockdown restrictions. 

Coronavirus has caused too much devastation for people affected by dementia. Now, families like mine must be better connected and involved in the care of our loved ones.

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John's story was initially published in August 2020 and was amended in February 2021.

33 comments

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I have to say it’s both comforting to know that others are in this boat and totally disheartening that so many of us seem to be. It really points to an incredibly huge problem. Here in Colorado, my mom has advancing dementia. Before coronavirus, I used to visit her weekly. It’s now been almost a year (just 3 weeks short of a year). The lack of physical contact and visitation has really taken a toll on her I believe. She has lost about 65 pounds in the past 11months, to which the doctors can’t find anything overt on her labs to explain it. I can’t help but think that our efforts to protect our elders could be in a round-about way causing more harm from isolation and loneliness. Especially for those with advancing dementia who simply cannot understand that there is a global pandemic happening. I was able to visit her yesterday for an in-person visit which was fantastic. We have to be 6 feet apart at all times, supervised and only visit for 30 min, but at least I could see her and be near her. Like others on the thread, I have concern that the only way I’ll be able to hug her again or spend more than 30 minutes with her is when it is too late and she is on her death bed. It doesn’t make sense! I’m concerned for the devastating impact our efforts of protecting them is causing.

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My husband only went into a care home 2 days ago I can't get enough information about him he's only going to be there for 1-month but already I want to bring him home I am so worried after reading all these stories I will go tomorrow and see if I can arrange that

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I worry constantly about my husbands care because the CQC seem to have limited their regulatory responsibilities, while other professionals have decreased their input, and visitors who will monitor and report on care standards are not allowed into the home. Very soon standards will drop, and residents may be at risk. This situation will be compounded by staff sickness ( winter bugs and exhaustion ) and COVID isolation .
SAGE have said that staffing levels in care homes should be increased by 20%, but I doubt this will be acted upon by Government and / or Local Authorities. Can you say whether this is likely to be addressed . Also care homes ( in my opinion ) are notoriously inexperienced at completing risk assessment on residents, linked to their care plan. Care home managers have been asked to complete individual assessments if the recommended visits do not work for people. What assistance are care managers being offered to carry out this task, and is there a research based tool to validate the outcome. This is a time consuming exercise and care managers must be struggling to carry out all recommendations currently being made on their time. Government needs to acknowledge this and apply funding to assist with the enormous administrative tasks .
All care home providers need to be reminded that care plans and assessments are a legal document, and can be used as evidence should intervention from the Courts be necessary if relatives are not permitted to have meaningful contact from their relatives. Care plans should have outlined the wellbeing / contact needs of residents , and identified how this need will be addressed. Care plans should be holistic so therefore the evidence of those resident in need of a visit from a relative in order to embrace their wellbeing should already have been recorded.
Families need to access a copy of the care plan, and act accordingly on the information contained, if found to be helpful.
Care standards can be maintained or improved if essential visitors are permitted into the homes to assist with the care of their loved ones, and failure to allow this will result in possible legal challenges and a drastic decrease in care standards in some homes.

Thank you so much for your continued, and vigorous support, without your Organisation we would be lost .

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My previous suggestion may be redundant. I’m sorry.

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There must be a technical and procedural solution to this. Expense may be a factor. I don’t think local officials or the local MP are necessarily the appropriate gateways to evoke change. If the CMO Chris Whitty could be persuaded to set-up a working party whose task was to draw up proposals to enable safe visiting of care home clients by close relatives that might work. Jeremy Hunt and Greg Clark have shown themselves to be amongst the most intelligent politicians surveilling government action. Maybe they would be worth contacting? I apologise if these paths have been considered. It’s 3 years since our family had a member in a care home so we were spared the current strictures which are heart rending.

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This is a horrible crisis! My mother has severe dementia and is in a wonderful facility. We can only see/visit through the window. At this point she is not able to carry conversation at all. Our biggest connection was through human touch. When she sees us through a window wearing a mask, I can only imagine what she must think. Does she think she is imprisoned? Her delusions and hallucinations could make her think so. Her home only has 10 residents and for that I am grateful, but the thought that we may never have contact again or be part of her care is a horrible weight to bear. I would gladly quarantine and test myself to be able to have a hug and hold my mother’s hand before it is too late.

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I agree with everything that has been said. It is now almost 7 months since my lovely husband has been touched by anyone in his family. We are a very close family, and this is devastating for all of us. He was in hospital when lockdown started. Sadly, I was told he could not come home because of the advanced stage and nature of his dementia. Latterly I did see him twice weekly for half an hour, when he was happy to see me. However, he had to transfer to a very expensive care home, since when I have seen him only twice in a month, during which time he has gone from eating well and independently and being mobile to not eating and not being able to walk. The reason for this could be attributed to 2 UTIs he’s had, never having had a UTI in his life, but I blame the manner of his moving. Due to government restrictions, I was not allowed to go with him. To add to his misery, he was put into isolation for 2 weeks, even though he’d been regularly tested. He spent his 69th birthday in isolation. He cannot take part in any of the home’s many activities. We are hoping that he will recover to some extent from these traumas. For the 1st time in 7 months, our elder daughter will see her dad this week with me, outside for 15 mins. . We cannot even know he will recognise her. I’ve been contacting everyone with any power, because this lack of family contact is cruel and inhumane.

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Here in the US, in the midwestern state of Michigan, the situation is similar, and similarly frustrating. My wife's memory care home has only recently allowed "vestibule" visits, where I sit inside the outer entryway vestibule, and she inside the second set of glass doors. There's a speaker phone setup, so she can cleary see and hear me, especially if I wear a clear face mask with so that she can see my face.
To compensate a little but for the absence of daily visits, I have sent into the facility everything I could think of: cards and letters, pictures of myself, recordable cards with a short message in my own voice, and a pillowcase printed with my picture on it, so that she can sleep with me every night. I've also sent her lots of treats, like her favorite pastries and candy. None of this is as good as being there, but it helps a bit.

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Since I last wrote on here, I have contacted two councillors about not being able to see our loved ones properly. I am awaiting a reply, although one of them did actually reply a couple of months ago about a another issue so she may be more productive.
I have also spoken to our lovely care home manager who I think maybe getting a bit fed up with me! Although out of this, I have found our care home manager/family member relationship very positive and he is very approachable.
He can say very little though, and just says we'll wait and see and actually my visits have not always been sad and frustrating. Although it's still in a very small hairdressers where we are practically knee to knee or the garden. And limited time is allowed.
I do hope something happens soon. I wait for news but we seem to be in a bit of a stalemate situation particularly for us with people in care homes. Just nothing seems to be happening.
My warm wishes goes out to all of you who are coping with this and hope we see better days soon.

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My dear husband is so upset by not being aloud to get to me only seeing each other six feet away an haveing to make a appointment for that is very wrong I was seeing hem five days aweek before all this staying to dinner as way an helping hem an one day aweek he came home for the day he's dementia as got very bad now just cannot go on like this please God make all this go away before it is to late

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Completely agree with everyone’s comments. My husband is 67 and has been in a care home for 5 years Now coming up to 6 months without any contact visits. Peering at him like a goldfish in a bowl is totally unacceptable. As a former policeman with 30+ years service I feel he is being treated worse than those prisoners he worked to catch. Not only is there an impact on him. His father aged 92 hasn’t seen him nor has hiis grandson born during lockdown. My daughter commented will I only get to see my dad again properly when he’s end of life and it’s too late. Time is very precious for our Older
people and those with like limiting conditions. I know no one wants COVID back in care homes but there is a massive issue about quality of life. Take care everyone

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My Father has dementia (3 types including Alzheimer's) and was taken into a care home for just over a month.

My mother and I tried each and every day to speak with him - we were told that we were allowed to chat with him- the NHS care home leave their phone ringing all day and every day. We have only been able to speak with him 3 x during his stay. He has no mobile to use as he is 90 years old and can only just manage a landline 📞 .

He is coming home today thank goodness! It has been an awful ordeal for him as he thinks we have abandoned him - he has said so on the phone to my mother.

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I too have a parent who has late stage dementia and is in a care home in lockdown.

Sadly early days the care home was ravaged by coronavirus- over half tested positive and half of these subsequently died. They are now clear and work hard to stay this way, for every person that walks through the door the risk increases regardless of what precautions are taken.

There is nothing humane or fair about this horrid illness - it’s rubbish not having contact with somebody dear but even worse would be to unknowingly take this in and let it loose in a confined environment of vulnerable people.

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My husband has Alzheimer’s and vascular dementia and I have not been allowed to visit him for the last six months and have had no telephone contact. I have spoken to the care home re visiting several times and it appears visiting any time soon is unlikely. I’m beginning to feel I will not see him again, which I find distressing. As we were not allowed to visit the care home before he was admitted, due to him being in hospital, I find communication with the care staff difficult, and because I cannot see him in person worry just how much he has deteriorated and feel guilty that
I‘ ve not been there for him, particularly when he was admitted to hospital from the care home. Surely, this cannot continue much longer.

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I empathise totally. I too could not visit the nursing home. The family did not have any chance to establish relationships with the home, as we’d have done in normal circumstance. My husband has deteriorated rapidly within a month, and we’re all hoping it’s down to 2 unexpected UTIs. The trauma of moving to a nursing home without your loved ones cannot be underestimated. We have lost 7 months of our precious lives with a doting family man.

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Sadly my husband has now passed away. My husband was admitted to the hospital, still no visiting. After a great deal of pleading and upset by me, my son and I were allowed to see him as a one off. The shock of seeing his deterioration was heartbreaking, my son barely recognised him and it was clear he was very ill and he was too frail for either tests or or treatment. He returned to the home a week after admission and we took the decision that he should not be returned to the hospital. He was nursed at the home and passed away 12 days later and I was there at the time but have this overwhelming feeling that I let him down. I just hope he got comfort from me being there at the end. No contact with close family at this time is cruel. You are right 7 months of precious time has been lost. I will continue to support any campaign to reinstate visiting.

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I find it so sad to hear so many are in a similar situation without any control over it. I’m a qualified nurse, midwife and occupation health advisor with infection control experience and specific viral infectivity knowledge. I am still being prevented from seeing my mother who has dementia and entered her Sunrise Residence after my father, her carer, died. She’s had a fall During lockdown resulting in multiple fractures and I was still refused access to her as her closest family member. The lack of information and staff shortages have resulted in concerns over her care in this exceptional time. I believe we should be grateful for all the hard work the front line carers give to our loved ones but this has gone on for too long. The management and those making their infection control decisions are not considering the individual and only pressure from relatives through multiple outlets is going to draw attention to a sector of society that everyone tries to forget or ignore.

We should be treated the same way as the carers and a family member allowed to visit someone with dementia

I am at a loss as to what to do as any movement to another home with dementia would be detrimental to my mother. She and I are therefore stuck in an uncontrollable situation that as time goes on becomes a form of torture and a breech of Human Rights.

When/where in the developed world have family members been prevented from seeing/caring for their close family members!

I have contacted my MP and CEO of my mother’s residence without success.

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