Hi, my wife has Lewy Body Dementia and I coped easily for three years but now I am struggling and can't manage. She is going to have to go into a Care Home. This worries me to death, especially the actual day when it happens. I can’t discuss this with her as she wouldn’t hear of it, and I am just going to have to take her. Do any members have any advice as to how they managed this situation and how they coped and felt? Thanks, John
Going into a Care Home
- Thread starter Johnboy4
- Start date
I haven’t actually done it but this is what I would do.
Tell mum we are both going on holiday.
Different destinations!
Approach the GP for some one off medication to induce calm. Maybe enough so you can try to see effects on a day prior to the ‘outing’
Only pack enough stuff for a holiday.
Take a magnificent box of cakes to the home for arrival.
While on my holiday I would become unwell, the doctors would say she needs to stay where she is until I am better next month, or the month after, or the month after that!
Tell mum we are both going on holiday.
Different destinations!
Approach the GP for some one off medication to induce calm. Maybe enough so you can try to see effects on a day prior to the ‘outing’
Only pack enough stuff for a holiday.
Take a magnificent box of cakes to the home for arrival.
While on my holiday I would become unwell, the doctors would say she needs to stay where she is until I am better next month, or the month after, or the month after that!
It is hard, we were lucky in that Mummy (now late stage mixed dementia) was calm and able to go along with us. I know this is not the case for everyone.
We had arranged, and paid for, sessions of "day care" at the chosen home for a few months. Sadly this is only possible if you pay, but it did make things easier as Mummy gradually got to know the staff and got used to going there. She did activities during the day and then my Dad collected her at the end of the day.
By the time she needed to be at the home permanently, it was somewhere she knew and the staff knew her.
If this isn't possible, I agree with the above, love lies are the way to go. If possible, it can really help for the manager to meet the PWD before they come to stay in order to asses them, this isn't always possible. Be clear with the home what the issues are, and what behaviour they can and cannot cope with. This avoids having to change homes.
Other than that, on the day Mummy went to the home permanently I tired to remain positive. Use the routines of the home. Time for lunch? Let your loved one go to lunch and while they do.....leave quietly. Do not say goodbye - I tried this and believe me it just causes more emotional upset. Explain to the staff what you are going to do.
It can take a while to settle in, I would leave a few days before visiting. When I did visit, mummy was outside with a group of residents happily putting bedding plants into pots. I think I had been more upset about the whole thing than her.
On that note, this all takes a toll on you, so accept that you will feel guilt and sadness, allow yourself time to adjust. Try to lose the guilt, it does no good.
We had arranged, and paid for, sessions of "day care" at the chosen home for a few months. Sadly this is only possible if you pay, but it did make things easier as Mummy gradually got to know the staff and got used to going there. She did activities during the day and then my Dad collected her at the end of the day.
By the time she needed to be at the home permanently, it was somewhere she knew and the staff knew her.
If this isn't possible, I agree with the above, love lies are the way to go. If possible, it can really help for the manager to meet the PWD before they come to stay in order to asses them, this isn't always possible. Be clear with the home what the issues are, and what behaviour they can and cannot cope with. This avoids having to change homes.
Other than that, on the day Mummy went to the home permanently I tired to remain positive. Use the routines of the home. Time for lunch? Let your loved one go to lunch and while they do.....leave quietly. Do not say goodbye - I tried this and believe me it just causes more emotional upset. Explain to the staff what you are going to do.
It can take a while to settle in, I would leave a few days before visiting. When I did visit, mummy was outside with a group of residents happily putting bedding plants into pots. I think I had been more upset about the whole thing than her.
On that note, this all takes a toll on you, so accept that you will feel guilt and sadness, allow yourself time to adjust. Try to lose the guilt, it does no good.
Thank you , that is most helpful. I will have to adapt it to my wife’s situation, but i appreciate your reply.
I am in a similar position. I have made 4 appointments to take my husband to meet the person in charge at a local care home and cancelled them all. I just can’t think about actually leaving my husband there. Although I think it might be the better option for him as he is sociable and loves company. I will watch your thread as I think people will have lots of helpful suggsections.
Thanks. It’s incredibly difficult isn’t it?
I'm afraid that it’s got to happen for my wife, I can’t go on much longer, so it’s got to be done, but I’m dreading the day.
Hello @Johnboy4
I didn`t tell my husband in advance, but on the day told him the doctor had advised he go to a convalescent home to build up his health and strength.
It worked well but unfortunately he thought I would be staying with him and became upset when I prepared to leave. Thank goodness the staff were ready to take over.
No one will pretend it is easy but if it`s the right time it has to be done.
I hope your wife will settle well as my husband did and the time you spend with her will be quality time
I didn`t tell my husband in advance, but on the day told him the doctor had advised he go to a convalescent home to build up his health and strength.
It worked well but unfortunately he thought I would be staying with him and became upset when I prepared to leave. Thank goodness the staff were ready to take over.
No one will pretend it is easy but if it`s the right time it has to be done.
I hope your wife will settle well as my husband did and the time you spend with her will be quality time
I'm still telling my mum that her stay is just for a while/a bit longer. The illusion of a temporary stay somewhere seems to be a well used and kind way to persuade our loved ones to accept a new place to be. "Rest home" and "Convalescence home" do seem to be more acceptable than the phrase "care home" which unfortunately has had too much bad press.
Incredibly difficult to do indeed. I didn't tell mum in the end where she was going on the day I took her. I did have to psych myself up to it though, because what I really wanted was not to have to take her at all. She loved going for a drive and I knew at the stage she was at she wouldn't recognise where we had arrived at (only two miles up the road). We walked in and we were both given coffee and I did the paper work and while I did that mum was off chatting to other's in the CH. I said I had to leave and the staff got mum to have lunch and I quickly left. She had lunch and seemed to be ok thinking she was in a hotel and at the time was enjoying the new environment and the fact that there were lots of people to chat with. Mum made a friend on the first day which helped.
I'll be honest its one of the worse things I have ever had to do in my life, but looking back it was the right time. I had lots of support on here and as others have said to me the guilt will be strong at first, but it fades in time. Mum is now in an EMI unit and at the end of her journey with Alzheimer's, but she is well cared for, something I could not have provided as her dementia got worse.
Take care and on the day take a deep breath, steady yourself and be calm and as you always are.
I did not tell my wife. She had been to respite a few times with no real problems so I thought it would be fine. I drove us to the home fielding the usual questions about where we were going with stock answers such as "we are nearly there". At the home I said that I needed to see someone and would she wait or come with me. The staff welcomed us in and made coffees. They distracted my wife so that I could hand over her case and leave. Current restrictions may make it more difficult. The person's level of comprehension is a key factor.
Totally agree with all above and @northumbrian_k. Say as little as possible about what you are doing. Use routines in the home - dinner, tea time, activities, to make a quick exit when your loved one is distracted. I tried saying goodbye, and unless you have nerves of steel, I really wouldn't recommend that. Whatever you decide to do, get the care home staff on board. They are well used to all kinds of subterfuge, and in many ways love lies are often kinder than the truth. I arranged beforehand that I would come each week and take Mummy our for coffee and cake, which we had been doing before she went in and did until her decline made this impossible.
Mummy has formed strong bonds with the care home staff and is happier in an environment where there are lots of people (well usually there are) coming and going and comforting routines, rather than being at home with one frazzled carer.
Mummy has formed strong bonds with the care home staff and is happier in an environment where there are lots of people (well usually there are) coming and going and comforting routines, rather than being at home with one frazzled carer.
My Father in Law developed dementia in his late 50's back in the mid 70's, my Husband and I supported my Mother in Law while she cared for him at home. Eventually he could no longer speak or walk, he was a tall 6 ft man she was under 5ft so it was difficult for her to physically handle him, but my Husband would go round at all times of the day and night to assist with the incidents and falls that occurred. He went into a home for 2 weeks respite care and the day he was due to come home, when the Carer turned to put his breakfast tray on the trolley, she hadn't put the sides of the bed up and he stood up and fell breaking his hip. After a spell in hospital they said it was impossible for her to cope with him at home any longer as it had taken 3 trained people to handle him, so he spent the last 3 years in a home, dying as a result of a virus which went around the home that winter. That was 1993.
By the late 90's my Mother in Law developed Dementia, we looked after her at home for as long as we could with the support of Carers, but she go that she didn't know where she was and would ring every few minutes for us to "Go and Find her". We needed a break following our two Sons Weddings, which took place within a few months of one another. We were both working full time and looking after Mother in Law and the weddings involved seven members of the Family visiting from America, so there was a lot going on. We asked her to go into a home for a couple of weeks while we had a holiday which she agreed to. We were only away 3 nights but stayed away from the home to let her settle, she never really did because she spent her time wanting to "go back home" but that wasn't the home she had lived in for 60 years, I think it was her childhood home. She was there just over 3 years when she passed away in 2006.
Before her passing we had to clear out and sell her home to pay the fees, several things happened at that time which confirmed to me what I was already suspecting, that my Husband, who at that time was about 60, was showing the same signs as his Father. He wouldn't accept this and refused to go to the Doctor. I finally got him there in 2015 and he was diagnosed with the combined Alzheimer's/Vascular dementia moderate/severe. I have carried on trying to get the best out of life for both of us but the last 12 months he has required 24 hour care as he can't find the bathroom and doesn't know what to do when he gets there, so I can't sleep for more that a couple of hours at a time. I can't find his way around the house so I have to keep checking on him to make sure he drinks and that he isn't relieving himself somewhere he shouldn't, he wears protective pants but isn't incontinent as such, he just doesn't know where to go or where to come to find me to help him (only in the kitchen) He can't speak, doesn't understand what I say, he can't walk far in fact some days he can't stand without holding on to something. He just wants to stay in bed and sleep all the time and fights me off when I am trying to help him in the toilet or get him to go into the shower. On top of these problems, this week he has started having difficulty in using a knife and fork, he gets worse by the week. I have found difficulty getting support, from the Doctor or the various organisations, so have coped so far on my own. Before the lockdown my Sister would have him for me for an hour while I went to a Pilates class, which I attended on the advice of a physio after treatment for a back problem but that was it. Folks complaining that on lockdown they have only been able to exercise once a day and shop once a week. I have been living in isolation all the winter, before the lockdown started, if we have tried a walk 6/8 times during lockdown that is as much as we have done. I have gone on a couple of rides in the car to get a change of scene and make sure the car keeps going.
I hate the thought of being on my own, we have known each other for 60 years, married for over 50 years but I fear if he goes into respite for a while he will be even worse when he comes out or that he won't come out at all and I will be left on my own wondering how I am going to manage financially as I know I will have to pay but at the amount they charge what we have won't last long. Sorry this is a bit lengthy it's my life for the last 48 years and at 75 I now fear I have no future and no one to share it with.
By the late 90's my Mother in Law developed Dementia, we looked after her at home for as long as we could with the support of Carers, but she go that she didn't know where she was and would ring every few minutes for us to "Go and Find her". We needed a break following our two Sons Weddings, which took place within a few months of one another. We were both working full time and looking after Mother in Law and the weddings involved seven members of the Family visiting from America, so there was a lot going on. We asked her to go into a home for a couple of weeks while we had a holiday which she agreed to. We were only away 3 nights but stayed away from the home to let her settle, she never really did because she spent her time wanting to "go back home" but that wasn't the home she had lived in for 60 years, I think it was her childhood home. She was there just over 3 years when she passed away in 2006.
Before her passing we had to clear out and sell her home to pay the fees, several things happened at that time which confirmed to me what I was already suspecting, that my Husband, who at that time was about 60, was showing the same signs as his Father. He wouldn't accept this and refused to go to the Doctor. I finally got him there in 2015 and he was diagnosed with the combined Alzheimer's/Vascular dementia moderate/severe. I have carried on trying to get the best out of life for both of us but the last 12 months he has required 24 hour care as he can't find the bathroom and doesn't know what to do when he gets there, so I can't sleep for more that a couple of hours at a time. I can't find his way around the house so I have to keep checking on him to make sure he drinks and that he isn't relieving himself somewhere he shouldn't, he wears protective pants but isn't incontinent as such, he just doesn't know where to go or where to come to find me to help him (only in the kitchen) He can't speak, doesn't understand what I say, he can't walk far in fact some days he can't stand without holding on to something. He just wants to stay in bed and sleep all the time and fights me off when I am trying to help him in the toilet or get him to go into the shower. On top of these problems, this week he has started having difficulty in using a knife and fork, he gets worse by the week. I have found difficulty getting support, from the Doctor or the various organisations, so have coped so far on my own. Before the lockdown my Sister would have him for me for an hour while I went to a Pilates class, which I attended on the advice of a physio after treatment for a back problem but that was it. Folks complaining that on lockdown they have only been able to exercise once a day and shop once a week. I have been living in isolation all the winter, before the lockdown started, if we have tried a walk 6/8 times during lockdown that is as much as we have done. I have gone on a couple of rides in the car to get a change of scene and make sure the car keeps going.
I hate the thought of being on my own, we have known each other for 60 years, married for over 50 years but I fear if he goes into respite for a while he will be even worse when he comes out or that he won't come out at all and I will be left on my own wondering how I am going to manage financially as I know I will have to pay but at the amount they charge what we have won't last long. Sorry this is a bit lengthy it's my life for the last 48 years and at 75 I now fear I have no future and no one to share it with.
I feel so sad for you @Jan L you seem to have had a lot on your plate over the years, it's a cruel way to have to end more than 50 years of marriage. By the way my partner is at a similar stage to your husband, I would say he's only a couple of months behind. He's going in to a lovely care home for 2 weeks respite tomorrow, I'm so looking forward to a break but it is a worry, yes I do wonder if he'll come out worse than he went in, but he had a week in early March, just before lockdown and he really enjoyed it and was very well looked after. Care homes have changed since your in laws went in and you really do need a break. Maybe find a couple of care homes and chat with the managers, share your fears. I've found the staff to be really kind and understanding in the various care homes I've come into contact with.
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Thank you for your reply @White Rose it is very reassuring to hear from someone in the same situation as myself, it is easy to feel you are the only one with the problem. Following the the winter, always a difficult time to get through, I was planning to visit some of the local care homes to see what they had to offer, I also considered paying people to come in and sit with him while I went on a walk with a local walking group who we have been walk leaders with in the past, but when I looked into the cost for the 3 hours to cover the time I would be out of the house it would have cost £60, that seemed a lot of money for me to do a one and a half hour walk, so considered it might be better value for money to have a 2/3 nights respite once a fortnight. We then had lockdown so I couldn't pursue it, I still feel very concerned about the safety of Care Homes while this virus is still around so am now waiting for the confidence that it is safe. It is so hard to take the first steps to letting go. Take care.
Like you, I was very concerned about the move fr my Mum
I found a few things that seemed to make it easier;
I found a few things that seemed to make it easier;
- I sneaked a few of her personal effects eg photos, ornaments etc, from her old house in to her new room
- My Mum has always been very sociable, so I arranged for her to receive a gin and tonic when we got there
- We went to the care home during the afternoon, when she is often at her most lucid
- I tried my best not to mention the care home unless it was absolutely necessary
- The care home have dealt with this situation many times before and I found them to be a great source of advice
It is so hard to contemplate, but often things you dread better turn out to be not as bad as expected. Do you have anyone who could support you on the day? A dear friend who lives in Cumbria has volunteered to come and be with us when the day comes. It has made me feel less fearful about actually walking away and leaving my husband in a care home. I hope you and your wife find a good solution that suits you both. There does seem to be lots of posts on here that say that people dreaded putting a loved one in a care home, but in the event, found that their relative was not especially distressed and quickly adapted to the change. I hope this is the outcome for you and your wife.
