Dementia Support Line
'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
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.
Keith Wells 88 years young soon to be 89.
says
Alzheimer's Society
saysHi Keith, we're really sorry to hear about yours and your wife's situation. It sounds like a very difficult position to be in.
We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisors about this. They can find out more about your situation, discuss and offer advice. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/get-support/dementia-support-line
We hope this helps for now, Keith.
Alzheimer's Society website team
A.Walmsley
saysWHY is it social workers almost always assume they know more about a person, than that persons husband,wife,brother, or sister that has known that relative for many many years.? I've been married to my wife for almost 42 years. She now has Alzheimer's dementia and is in a nursing home,not getting the care and compassion she should be getting.I want to bring her home out of that place, I complained to the management of the place,regarding the care,and lack of, and as a result now have to wait for a social worker to be available for me to visit my wife,because the home has imposed escorted visits in a back room. because the management said some of the staff are afraid of me, and because I put a spy camera in my wife's room that discovered the neglect, and abuse she was subjected to. The occupational therapist visited my wife and my home and said she see's no reason why my wife can't come home,but then said more people have to be involved in the decision. my wife's allocated social worker, told me out of the blue that my wife now has an advocate,which was news to me and I haven't a clue who it is. Why do these people automatically assume they know what is best for OUR loved one's when they have not known them for any significant length of time.? when we have spent decades living with our loved ones,plus I want my wife home so I can give her the best treatment, and care because I love her, NOT because it's my job.
We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456 and speaking with one of our dementia advisers. They can listen to your situation in more detail, and provide support. More details about the support line (including Christmas opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
Alzheimer's Society blog team
Mary Marthinsen
saysI need to remove my husband from his nursing home. He is supposed to be getting palliative care yet frequently I fine him with injuries that no one noticed or without medication ( morphine patch ) . He has become very depressed as he is only allowed a one hour visit per day. He is regularly wearing someone else’s clothes although all of his are labelled. He has regained some mobility since he went in so I feel with the help of my family I will be able to look after him now. He is council funded so what is the procedure to remove him back home ?
Alzheimer's Society
saysHi Mary,
We're very sorry to hear about your husband, it sounds like you're going through a difficult time.
It's hard for us to advise on your situation without more information, so we'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you and provide specific advice and support.
You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope that helps, Mary. Please do call our support line for advice.
Alzheimer's Society blog team
Wayne
saysMy wife is the same I keep buying clothes for her putting her name in them and they keep going missing the slippers and shoes I feel so alone without her
Pamelahodson
saysMy husband is the same all his clothes are named but he never wears his nice check shirts.i can understand socks getting mixed up but residents should wear their own clothes.it is so upsetting seeing him in someone else's clothes and someone wearing his.i have mentioned this to the manager but they don't do anything.what is the answer?
Pauline Ridley
saysOver the years I have looked after my sister, I helped to get her a council house beside me after a while we had an argument and after 2days I went back to find that she was letting her next door neighbour take over her care and needs,I didn’t complain but kept going over to see her and would take over her care when neighbour was not available. I found that she never had any money and that her bills were not being paid also the food that was in her house was very little and not nice at all, I had social worker and her manager out with the neighbour to voice my concerns,she never spoke,never denied anything I was saying or got involved with any of my complaints, I seemed to be talking to myself and after a long while I was frustrated and left, the s/wrkr came over to my house and told me that she believed what I was saying and as far as I was aware nothing was looked into and the neighbour just carried on,I still kept going over but I was told that my sister knew what was happening so nothing could be done, a few years passed and this neighbour was filling my sisters head with constant lies which made her look so good and clever, some were so ridiculous but my sister believed her anyway I could see she was cutting her away from me and the family until I had a call out of the blue to return her keys from the s/wrkr which I did right away I had been accused of stealing some pictures which I never had but knew this was the way the neighbour had got me out of her life and was free to do what she liked,I will say after a while my brother was also accused of this and I will always say that the neighbour groomed her by making herself out to be important and needed,there was also carers going in to see to her needs,after a few more years I heard that she had been taken into a care home and had fallen out with the neighbour so I got in contact with her, I was told she was being difficult through time and her care home was changed she is so unhappy there and is always upset, I got her a mobile so we could speak daily and she wants to come home to her council house which is still there for her as it has gone to the courts through her having no contact with us at the time to see if she can go home,this has been going on for months and her mental health is getting worse as she cries daily and complains about wanting to go to her house, I have been onto the s/wrkr a few times telling them how she is coping there but every thing seems to take forever over a decision which is not helping her mental health in any way, I would like to have her home and help her again with the family,we will support her with the help of carers as I live over the road,she has been diagnosed with a split personality but has passed the tests for dementia, I would like to know what I can do to get her out and back home as that’s all she is longing for and does not want to be there, can you help me please as s/wrkrs don’t seem to have the time to even visit her and she feels like a lost cause ty
Alzheimer's Society
saysHello Pauline,
We're very sorry to hear about your sister's situation - it sounds like you are going through a difficult time.
We would strongly recommend calling our Dementia Connect support line on 0333 150 3456, and speaking with one of our trained dementia advisers. They will listen to you and can provide specific advice, information and support on your situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also like to join our online community, Talking Point. Here, carers and other people affected by dementia can share their experiences and receive peer support from others who have gone through similar situations. You can explore the community, or sign up for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Pauline.
Alzheimer's Society blog team
Graham whitlock
saysMy wife went into a care home for respite but social will not let her home because she does not have full capacity can they do this I have an lpa but care place ignore
Alzheimer's Society
saysHi Graham,
We're sorry to hear about this. It's difficult for us to advise without further information on your situation, so we'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. You'll be able to talk to one of our trained dementia advisers, who can provide information, advice, and support specific to your wife's situation.
You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, Graham. Please do call our support line for advice.
Alzheimer's Society blog team
Rita Arnold
saysI too have my beloved husband of 60 years in a care home throughout this pandemic. We have been able to take him home several times a week, which he loves, but recently there was a covid outbreak at the home and they were isolated for 2 weeks the another outbreak extended that by another 2 weeks. Window visits have been allowed but we can't hear each other and at my age being outside with no shelter has been a trial. Our longing to touch and comfort each other through a window is heart breaking. I want him HOME with me. I will care for his needs during the day but I worry about the nights and his wandering and my lack of sleep. It seems our local council do not have night carers. I don't have the funds to pay . I'm so depressed and constantly cry even trying to talk to anyone is so very difficult without me sobbing uncontrollably. He wants me so much and I him.
Hi Rita,
We're very sorry to hear about this - it sounds like you and your husband are going through a very difficult time.
Please know that we are here to provide you with support. We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. You can speak with one of our dementia advisers who will listen to you, and offer support and advice specific to your situation. More information about the support line, including opening times, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also find it helpful to get support, information and advice from others who have been, or are going through, similar situations in our online community, Talking Point. You can browse through others' experiences, or create a free account here: https://forum.alzheimers.org.uk/
We also have a page on care home visiting which may have some useful information for you: https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…
Hope this helps, Rita, and please do call the support line if you'd like to talk to a dementia adviser.
Thanks,
Alzheimer's Society blog team
Richard
saysCovid seems to have been used as a rationale to dilute any preexisting norms. Similar to the "chip shortage". We are also trying to get a relative, who was diagnosed with dementia, out from a care home where regular access (including booking a slot) is nearly impossible to achieve. It seems once a person has had a mental competency assessment go against them it is extremely difficult to overturn external decision making without good legal counsel. Reason and consideration of persons best interest gets conflated into some Covid related excuse. Delays, stalling etc. I was able to get better access when our relative was taken to hospital!
Angela DiMarco
saysI 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.
Denise Canney
saysSeek 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
Jane Pethig
saysMy 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.
Jane
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?'
https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-hom…
'Preparing to visit a person with dementia in a care home during coronavirus'
https://www.alzheimers.org.uk/get-support/coronavirus/care-home-visits
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
Martin Sach
saysThere 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.
Richard
saysTrue. But a lot go into care, especially during Covid pandemic, because of a lack of face to face meetings to discuss options. Our relative was assessed with dementia but at no point was any family member included in process, planning etc. We are also not deemed to have nay need to know regarding the extent of any dementia - nor what type.
Image our surprise when our relative was taken to hospital - at that point we WERE able to visit relative and nursing staff commented they saw no reason for person to be in a care home - they didn't even know the person had dementia until they consulted the medications sheet. Spoke to occupational therapist. Right now relative is mobile and could live at home. Time for legal advice.
Cheryl Mccrudden
saysMy 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’
Jo Twose
saysMy 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
Tracey Rawlings
saysMy 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 .
Sandra Leddington
saysMy 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
C
saysYour 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.
Ruth Benton
saysIt’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.
C
saysWe 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
Sarah
saysThat’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.
June connell
saysThinking 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
Yvonne
saysMy 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
Isobel Duffy
saysIt is important that both parties have physical contact regularly. It is cruel & unfeeling for this to be banned.
June connell
saysHi 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
Nigel Heywood
saysHi 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.