John and Lesley

'Five 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. Despite the Government’s new guidance on care home visits, John explains how more needs to be done to make sure care home visits work for people living with dementia and their families.

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, five and a half 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

Eventually, I have been able to see her for socially distanced visits in the garden, which I was hopeful about. But these are really hard for both of us.

It’s nice to be able to see her and make sure she’s okay, but without being able to go near her, it’s hard to get a response from her. 

Being outside makes Lesley sleepy, and being two metres away makes it impossible to meaningfully engage with her. I’m worried she doesn’t even know I’m there.

No end in sight

It’s now been five months since the care home first locked down, and it feels like there is no end in sight. 

When someone has severe dementia, five 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 the manager needs to keep the home 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 and Lesley, and I would do anything to be able to see her properly again.

Reconnecting families

Like many people, I was eagerly awaiting the Government’s guidance on care home visits, which was published last week. Unfortunately, this doesn’t seem to have made much difference to us yet, and our visits aren’t changing much.

The guidance states that individual assessments should be carried out if the recommended visits do not work for people, and it is now up to Local Authorities to work with care homes and make sure this happens.

I know many other people are having difficulties with care home visits too. With the infection rate falling and lockdown easements evolving, I believe a blanket approach to care home visits is no longer fair or acceptable.

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.

Will you write to your Councillor about care home visits?

Alzheimer’s Society have developed key recommendations for local authorities to take into account when supporting care homes to reopen safely for people affected by dementia.

You can help by sending Alzheimer’s Society’s briefing to your local Councillor, to make sure our calls are seen by the right people in your area.

Write to your Councillor

26 comments

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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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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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I agree, my Mom is in a nursing home and although we are lucky enough to talk to her on the phone it is not the same as helping with her care. The employees of these facilities go home and do the same things we family members do. Why can’t we be tested and spend time with our Mother? At least the immediate family. She is taken care of but not as much one on one that she deserves at this stage of her life. The employees at these facilities are often overworked and do not have the time to be with each resident much. My Mom often is crying when I speak with her. Sitting alone in her room several hours each day. Something has to change!!!

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My mum has fairly advanced dementia and is now in a nursing home following discharge from hospital 4 months ago. We have no issues with her care and have been visiting her in the garden each week for the past 2-3 months. These are working well but I do feel more weekly visits would be beneficial for both her and the family. The government needs to start opening up care homes more as the damage caused to dementia sufferers and others in care homes through reduced access to family members, is significant and irreparable. My feeling is that those in care homes have been written-off by the government because it's the easiest option.

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We’ve only just been able to start seeing my nan again outside to be told this week we aren’t allowed to visit anymore, with no explanation just that that’s what public health have said. My man no longer remembers who we are and barely talks anymore due to being stuck in a room on her own 247 I know they need to keep her safe but it’s inhumane leaving people with dementia to spending of the time on their own no interaction at all, it breaks my heart

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My father is in a care home and visits have only just resumed. Only one member of the family - outside - mask - fill in forms etc etc. Divisive and totally cruel. We visited ( dad has two daughters) every single day to see him previously. I am not happy with this and I have contacted The care home manager, Chief Exec of the borough, councillors, the mayor and Director of Public health to express my disgust. It's quite possible I will never see my father again. He has dementia, in a care home, so I believe very strongly in his last month's years he should be able to have his family around him . I may not change anything but I fully intend to be heard and stand up for what I believe in.

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I looked after my mam for 10 years, that’s when she was first diagnosed with early onset Alzheimer’s. I would be with her every day , took her in lovely holidays and made special memories to last a lifetime. Since lockdown she moved into a care home for all of our safety as I have 2 daughters, one who works full time and my mam needed 24 hour care to which I couldn’t do . I haven’t seen her since 23 March . So from being in her life every single day for 10 years to nothing is very heartbreaking. I need to see her , to hold her , to do her hair , to tell her that everything is going to be all right , please reopen the care homes , we really can’t go on like this for any longer.

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In the 10 years since my sister's stroke I have never left her longer than 3 days without my support, I would normally visit minimum 5 times per week, help with personal care, difficult mealtimes, be the voice her stroke took away and help communicate and monitor her complex needs which her dementia exacerbates. These hopeless 'window' visits are of no benefit to her and only serve to highlight the massive deterioration wrought by this period of lockdown / deprivation of my support. 15 minutes once per week, 2 metres apart, she inside me out, speaking through an open doorway, wearing a mask! Even that was cancelled this week due to only available room now being filled by a new resident and weather too cold to allow for outdoor visit. This is simply unacceptable, becoming more so as the months roll on, our loved ones are being deprived of their human rights. Care homes need some authoritative proper guidance and quickly.

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I have not seen my Mum for 6 months. No garden visits or window visits have been possible because she is on the first floor. There is now visiting allowed in a room downstairs. Mum will have to be hoisted in and out of bed into a chair to allow this to happen for a visit lasting for no more than 15 minutes. I am not allowed to visit as only one carer per resident is allowed and that will be my sister who lives nearby. My Mum is 92 with Lewy Body dementia. This is a nightmare.

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Angela. My wife needs to be hoisted as well which is quite distressing in itself. Because of the limitations on time 15 minutes and distance and wearing a mask outside visits do not achieve too much as touch and reassurance is not possible,. Hopefully some action will be taken as a result of this campaign. Only one visitor is allowed as well to my wife. The rules are very stringent.

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