'I decided Christine was coming home with me' - Moving out of a care home during coronavirus

As a loved one of a person in residential care, you may be considering whether it is better for them to live in the care home or at home. Ronald shares his experience about bringing his wife, Christine, back home during the coronavirus pandemic.

Can a person with dementia move out of care during COVID-19? 

There’s a lot to think about and each person’s situation is different.

There are some general issues and the pandemic has introduced some more, including difficulty in arranging care home visits. For some people that may make a difference in weighing up whether it is better for them to live in a care home or at home. That is never an easy decision even without a pandemic.

Whose decision is it to make?

This will partly depend on whether the person is paying for their own care or whether it is being funded by a public body, such as the local council.

It also depends on whether the person can decide for themselves. 

If the person is paying their own fees then they are free to leave the care home whenever they like, if they can decide that for themselves. Legally this is called having the 'mental capacity' to decide that. If they can’t their wishes and feelings should still be taken into account but the decision will normally be made by their family or those close to them with input from professionals about their needs. 

If there is someone with a Lasting Power of Attorney (LPA) for health and welfare they will take the lead but otherwise it will probably be a joint decision and needs to be about what is best for the person. If someone has an LPA for property and finance they should also be involved because there will be financial implications.

If the local council (or more rarely the NHS) are paying the care home fees then in theory the decision will be made in the same way but the public body will have much more of a say because they hold the purse strings. The costs of care at home may be different. They may also need to review any Deprivation of Liberty order that may be in place. 

Even if there is no current public involvement the local council can be asked to help with assessing the person's needs and arranging care at home. Or in rare cases where the council is concerned for the safety of the person going home they might get involved (this is called safeguarding).

Things to think about

Each situation is different, but here are a few things to consider:

  • What needs does the person have and how can those best be met? You might need to talk to the professionals involved in the person’s care about these.
  • How are those needs likely to change in the future? If the person has dementia it is likely that their needs will change over time.
  • Why was it decided that the person should move into residential care? What has changed?
  • Is the person settled in the care home? How will another move affect them?
  • What are your own skills and strengths and are you able to provide care yourself or will you need to bring in professional carers? How will they be paid for?
  • How will you cope? What will happen if you become ill?
  • Are other family members or friends able to help? Are they nearby?
  • Is the house suitably adapted?
  • If the person has particular medical needs or if they are at the end of life, what support will there be for them at home from the GP or other community health services in your area?
  • If the main issue is visiting the care home, can you discuss some better visiting arrangements with the home that take account of the person’s particular needs and your role in caring for them?

There might also be some timing issues such as if there has been a coronavirus outbreak in the home when isolation periods will need to be taken into account. Most care home contracts will have a notice period to end them so check that too.

It might help to make a list of pros and cons of any move and discuss that with family and friends and the person themselves if you can.

Ronald's story

Ronald and Christine together during happier times

My wife, Christine, and I have been married for 58 years. She has Alzheimer’s disease. 

In March, Christine went to a care home for two weeks of respite but got caught in the national lockdown. 

Unfortunately, Christine had an accidental fall resulting in a hip replacement. Two to three weeks later, she was released from hospital, but not to the same home. The care home she was at previously did not have nursing facilities. Instead Christine was released to a different home within the same group.  

Christine was placed under one-to-one care for two weeks. A few days after this care ended, they found Christine on the floor in her bedroom. I wasn't contacted by the home for at least two hours after the incident, thus resulting in no one being able to go with her to hospital. By the time I was told, Christine was already on her way there. 

This really upset me as the one-to-one care was in place to continue, but only at the home’s request. We have since learnt it was not requested by the home.  

This second fall left Christine with a broken wrist and requiring another hip replacement. After five weeks in hospital, Christine was ready to be discharged.  

It was at this time I decided Christine was coming home with me.

I did not feel I could trust others with my wife's welfare. l had looked after her quite safely for two years prior to this.  

In retrospect I delivered my wife, who was in a perfect physical condition but with a diseased mind, into care, only to be returned a completely broken wife in mind and body.  

Over a period of five months, during the height of the pandemic, I was very rarely able to see or speak to Christine. So there's no doubt why I chose this option.

Social services helped to arrange carers eventually. This help is now in place and working well. I needed the support as Christine is doubly incontinent now after this experience. 

Yes, it's hard work. But I don't regret my decision in anyway. I can give Christine the love and respect she deserves. I can see, feel and love my wife in the way she should be cared for.

Helpful resources

There may be no easy answers, but our advice on Care homes: when is the right time and who decides? has more information that will help. 

You may also find it helpful to talk with other people affected by dementia who are going through a similar situation. Join the conversation on Talking Point, our online community, to share your experiences.

If you need information, advice or support, please speak with one of our trained dementia advisers through our Dementia Connect support line.

Dementia Connect support line
Our dementia advisers are here for you.
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I want to bring my 96 year old mother (who has dementia) home from her care home but today have been told by Social Services they would block any move. Unfortunately I dont have an LPA for health and wellbeing only for her finance. We only had the old EPA in place and wasn't aware of any new ruling, why would we, we hadn't needed to know.

I moved back into my parents home to look after them both in March 2018 until mum went into a care home in February 2019.
It was just my father to look after then and for the last 2 years he has been bed bound with double up carers visiting for his personal needs.
Unfortunately my father passed away in May at home age 98.

Mum developed dementia in 2017 and prior to going into care had suffered 2 falls at home fracturing one hip then the other. She became very ill afterwards due to having had 2 x major surgeries in close succession/inactivity and ended up back in hospital. Instead of coming straight home she went into a care home for CHC assessment but didn't qualify.

My mother was to come back home but local care agencies couldn't immediately supply 2 x carers 4 x a day so I moved to her to another care home for respite for 3 weeks, which ended up 5 weeks and permanently due to the fact mum liked all the fuss and company, it felt wrong to take her away. At that time and her dementia wasn't as it is now, she could converse etc.

My mothers personal money ran out after 12 months and the council part paid as did my mum and my father a negotiated reduced rate from the £1,350 per week rate.
Now that my father has passed away mum is financially secure again with the half value of their property. A sale or finance has to be arranged as probate will take a while.

Like everyone else in this blog I had to go through the torment of not being with my mum on a 121 basis every day for 13 months. During those 13 months the connection we had has been lost to her dementia but I feel I can still communicate by talking about her parents her home as a young woman etc. better than any care home would be able to.

I know I can offer her more sincere and loving care than she receives at the care home, where they keep her clean but where I also need to keep a close watch over every detail of her care like a hawk.

The social worker today told me even if I obtain a type of Public Guardian LPA for health and well being my appeal would be subject to the councils advice and that would be not to move her from where she is. I'm devastated as you can imagine as it was always my intention to bring mum home as soon as I didn't have to look after my dad.
I don't have any siblings or children of my own.

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Seek a solicitor that deals with community mental health
You should be able to take her home as long as you have the carers and equipment to deal with it why on earth will they not allow
You need to really fight this tell them u are going to the newspaper about it

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My mum in a care home. A whole year - no physical contact with her. Feels like she’s in prison- has no rights. Feels the quality of her life been forfeited for longevity. But what’s life without love or family.
Do any homes allow in door visits now? Can my mum move homes if I find a more reasonable one?
So so devastated by all this.

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Jane, we are so sorry to hear about the difficult year you've been having.

Please know that our dementia advisers are here to listen, answer your questions and provide you with advice and support. Call our Dementia Connect support line on 0333 150 3456. It's available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.

We regularly update our website with coronavirus information, including details on how the pandemic is affecting care homes. Here are two pages that may be particularly helpful when seeking answers to your questions:

'Can I visit a person with dementia in a care home during coronavirus?'

'Preparing to visit a person with dementia in a care home during coronavirus'

Remember to call our support line if you'd like more information or emotional support.

We hope this is helpful, Jane.

Alzheimer's Society blog team

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There are many advantages to care at home if, and it is a big "if" there are the resources available at home. This is a really tall order if 24 hour care is needed for the person. Apart from the cost there needs to be sufficient space for the care team and possibly house adaptations. It isn't realistic in a lot of cases but we should take of our hats to those dedicated relatives who undertake herculean roles and make a success of it.

Undoubtedly the lockdown of care homes has had a damaging effect on residents deprived of visits from their loved-ones. However we should bear in mind that when people go into a care home they are generally rather elderly and rather poorly otherwise they would not be going there. Neither dementia nor old age has a reverse gear so continued decline, lockdown or no lockdown, is to be expected.

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My husband went into hospital for 2 weeks in July with an infection which was treated but he had already stopped eating and drinking. Although he was at the end of life stage I was told he couldn’t stay there or go into a hospice because his needs weren’t medical. Alzheimer’s had destroyed his brain but apparently that’s not medical! They found a place in a care home but because I couldn’t visit I had him brought home where we could all be with him. The day they carried him in doors will haunt me forever and five days later they carried him back out again when his body finally gave up. The last year of his life was horrendous and I feel such guilt that I couldn’t make him better or happy. Perhaps a care home would have been better, I don’t know. Such a bloody awful disease and at 71 he should have had many more years. Thank you for ‘listening’

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My Dear Dad died in a care home last week age 77. I am totally devastated. For the last 6 months we have had very little contact due to Covid 19, only a handful of times and meters away from him so he did not recognise us, see us or able to understand. I was at least with him when he died but only the last 3 hours. Previous to Covid 19, he had a family visitor every day and I paid for a private Carer to sit with him one evening a week. I’m just so devastated to lose my dad like this. Dementia is so cruel because many can’t live at home until the end. I’m grieving for the way his life ended. I lost my lovely Dad years ago but without being able to touch him is burning me inside. I just feel terrible I am sure with time things will I improve. Love to all the families and people suffering this terrible disease xx

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My dad recently went into a care home after a UTI his Alzheimer’s advanced and mom couldn’t care for him at home, since Covid hit he went downhill not seeing grandchildren . The the UTI he has Lewy bodies to and since being in the care home, hallucinations have got worse .
We go and see him through a closed window , but he cannot hear us .
He barely recognises us now and is detoriating fast , he went to hospital walking he now needs help walking and is incontinent , he looks so anxious and scared , I believe if he could see family for proper visiting he would perk up.
The home have reported him getting aggressive this is so out of character of my Dad .
For all families with families in homes they need to see there loved ones .

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My mum went for 2 weeks respite also had a fall broken hip hospital, then back to care home , no help getting her walking , no care only tablets until she was so poorly had to go to hospital , doctor told me she was toxic to many pills to keep her quiet and in her chair , I had a safeguard done but all who cared for her only followed instructions so nothing to answer to , , my mum went in walking talking and able to go toilet , she can not do any of those things now , I could not have her home as no room for all her needs , moved her to another care home with nursing 2 weeks in and lockdown how I wish she had never gone for respite , if I could get her out and look after her I would , so well done for getting your wife home best wishes

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Your story is very similar to mine. Feel like I’m banging my head against a brick wall with the care home. My mum has only been there 3 months and in that time has lost so much weight & also broke her hip then she fell out of bed again as they had no bed guards up. Feel she would be better back home. She could walk before she went in there now they say she doesn’t want to and because of the regulations it’s so difficult to do anything.

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It’s the trust that has gone with my mums care home. She was 80 on Friday and not one card was put up. Terrible & cruel . Mum has Vascular Dementia and is in a tiny room all alone 22 hours a day . It’s killing her. Each day she forgets that Dad died 11 weeks ago. Each day she sobs. Each day she’s ignored . I want to move her to another care home where staff are qualified in dementia care. This current one said they were but no way . This continuation of no visits is inhuman.

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We all have similar stories. Sadly my Mum passed away in December. Only contact we had was the day before she died. We were allowed to go in & be with her in the final hours. Feel robbed of my Mum’s last few months of her life and I will never forget the way she was treated in the care home. Left to lie in her bed or strapped in a chair. In the end she gave up. Those last memories will forever haunt me. My views on people being in care homes has changed. Thought we were doing it for the best, now I don’t think it was the right decision. We have all had such a tough time this last year with our loved ones. Love to all x

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That’s so lovely. I’m so sorry your wife had such a rough time, as must have you. It can’t be easy to care for her at home but so worth it for the love and contact of family.
My mum is later stages of Alzheimer’s. Thankfully she is very well cared for in a nursing home. I have also taken a part time job there. So thankful I can see my mum, I love her soooo much.

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Thinking of you all x my heart goes out to everyone with a loved one in a care home x
I got my husband home after he was in nursing care for 10 months x he is happy here x we have a good care plan at home and my son is helping me . Take care all of you special lovely people x

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My husband has been in a nursing home a year and 9 months it was first Parkinson's then lowy body with dementia now 6monts ago Psp he has to be hoisted and has not been able to walk for most of the time he's been in carried visited every day before the virus have only been allowed to see him twice since March breaks my heart as he's missing me and his family , something has to be done to help us.been married for 54years he is 76 we did everything together he can't end his life like this

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It is important that both parties have physical contact regularly. It is cruel & unfeeling for this to be banned.

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Hi everyone,
I got my husband out of his care home last Wednesday . We had assessments and made sure we have the right equipment at home and a care plan of carers . Although I have powers of attorney . Procedures had to be done . X George cried when I cuddled him and said he loves me . We discussed this asa family . My son is helping me x George has bn face timing grandchildren . He is where he belongs now x

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Hi Yvonne I really hope you have managed to sort something out, I feel exactly the same my wife has been in a care home for only a few weeks, biggest mistake of my life but everyone else thinks I made the right decision. I miss her so much, she has dementia and needs 24/7 care but I feel I can care for her and was forced into the decision by mounting financial problems. She is only 65 and should be in there she should be at home with me receiving all the love and support she deserves the same love and support she selflessly showerd on me the kids and the grandkids before this undeserved horrible horrible infliction took her mind.

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Tried to keep my father of 96 at home , with live-in care costing almost £3,000 per week . When the carer he liked took a holiday things fell apart , the hallucinations started and associated delirium/incontinence (Dad has probable Lewy Body dementia). He has been in one hospital (2weeks) then another (1 week), now been moved to a care home and had a fall there already. Why can't the NHS accept that this "care?" does not suit people with dementia and makes them and their families physically and mentally more ill?

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My husband was in a care home, I went most days to see him. Then COVID started and for 6 months I hadn’t seen him. Until they put him weekly on an iPad. I saw he had gone down hill, and I could see he was
Neglected, on many counts, including not having dental care, so I took him home. His improvement is exceptional since he’s been home. I’d strongly recommend it. He has severe Altzheimers, but had he of died there, I never could have forgiven myself.
At least I’m doing my best to keep him happy and well. I wish you luck...,

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Helen your doing a great job im like you brought my wife home in june because could not see her yes it's hard work but no one should suffer if you can't see them it's not the care homes fault they were fantastic it's the local councils and government keep up the good work stay safe

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I so wish I can have my husband home I am now even more worryed as they are saying he dementia as got so bad in the time from the first lockdown he may have to be moved on no way do I want this in this time with the virus for God sake he will end up being lock in he's bed room for two weeks no way

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I really admire you for taking your wife out of the care home.
Well done
My husband has been in residential care for 12 months now, and there isn’t a day go by with questioning myself about the decision in placing him there. But I know that I will not be able to look after him , as the situation became too stressful for me. As he also have dementia and also double incontinent. But since going there he has deteriorated quicker that I was expecting no longer walking unaided which I think is mostly due to lack of exercise. I wish you all the very best with your wife.

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Thank you for your wishes Juliana. Take care Ronald.

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Thank you it is so helpful to find again people who are willing and able to offer sound advice. My husband has been in a care home for six years, and before coronavirus 19 stopped all meaningful visits I was able to cope. I spent time every day with him really trying to keep him mentally alert, and to lock my husband inside as though he is a prisoner with absolutely no idea what he has done wrong is criminal in my opinion

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It’s very sad to hear this story. Not only sad for Ronald and Christine’s experience and situation but also the fact that confidence in care appears to be diminishing.

We want our loved ones to be safe and cared for in the same way as they would be cared for by those who love them. We want to trust and have faith in the care system.

I’m not sure how we can improve and move forward in the current situation.

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