Has anybody got experience of bringing a loved one, living with dementia, back home? Mum is still quite independent, doesn't want to stay at the care home, she is quite lucid, and deeply distressed about being locked in. She is also very vulnerable and needs her family around. I am living in her home, in order to visit her in the care home. I visit her most days. Obviously it will affect me and I have thought of the impacts on me long and hard, but it seems bonkers leaving her there, when she is so clearly distressed, and I am living in her home. She needs family around, and I am lucky enough to be able to offer this support for a while, perhaps until she progresses to needing more support. I will have social services and other professional care to help me. I am wondering what issues may come up for mum (she doesn't recognise the home she lived in for the last 20 years so it won't feel like coming home) that if prepared for might alleviate them. Any advice?
Bringing mum back to her own home, after 2.5 years in care home, any advice?
- Thread starter Juliasdementiablog
- Start date
This is all quite new to me as my mum detrioated rapidly. The issues I found were that her sleep pattern is disruptive. She always slept for a few hours woke in the middle of the night made a drink pottered about quietly so didn't wake us. Now with the dementia she wakes between midnight and 3am. It's like sleep walking. She does alsorts of things too many to mention. Suffice to say I wasn't sleeping properly.
I also found during the day I simply could not leave her. She became anxious and again would do ridiculous things. I would nip out for shopping and wouldn't know what I would come back to. Also she wanted me to be with her 24/7.
She has been in a care home two weeks now and seems settled as she is never on her own.
Others may have more experience but for me she simply could not be left on her own.
I also found during the day I simply could not leave her. She became anxious and again would do ridiculous things. I would nip out for shopping and wouldn't know what I would come back to. Also she wanted me to be with her 24/7.
She has been in a care home two weeks now and seems settled as she is never on her own.
Others may have more experience but for me she simply could not be left on her own.
Thank you. That's helpful. I must be aware of what will happen at night, because currently not planning to get any support there. Also, I suspect she won't want me to go anywhere without her, or won't be happy having carers take her out. I do plan to take her shopping, and doing all the usual stuff together. But I will needs lots of breaks from her. I already find it exhausting at times. I need to have good strategies to make this work, otherwise I will go bonkers.
I brought my Mum out of a care home to live with me in my home and it worked well for over 5 years.
Mum was diagnosed in the early stages of alzheimers in 2001. At that time she lived on her own 70 miles away from me and was fully capable looking after herself. In 2003 she decided that she wanted to move nearer to me so we sold her house and I found a sheltered bungalow for her about 3 miles away from where I lived. This worked reasonably well for nearly 7 years although she did find it lonely and I arranged day care for her 3 days a week. Unfortunately she then had a fall and broke her right arm just below the shoulder where it could not be put in plaster. She did however, make a good recovery as she started to use her arm as soon as the pain deceased and she continued to look after herself properly at home. However, a few months later she decided she wanted to return to live with her parents(both long deceased) in the midlands and started to wander. After a couple of incidents where she was spotted by the community police officer trying to make her way to the railway station to catch a train to the Midlands to be with her parents (both of course long deceased) it was clear that it was no longer safe to be on her own. I was working full time then and the daycentres were only open from 10am until 4pm so she moved to care home. She was not very happy there because she was fully capable of looking after herself, apart fro her desire to return to the Midlands.
A few months later my employer was looking for employees to volunteer for redundancy/ part time working. I volunteered for both and was accepted for part time working. It took months to arrange but after 10 months I went part time and Mum moved in with me. On the days I went to work she had day care in a local care home- she didn't want to go there but I knew she could not be left safely on her own. It worked well for three years, she didn't need personal care, was fully continent, my only problem was she wanted to go out all the time. I then decided to retire early and we moved to another part of the country where again she settled well and went to day care three days a week. This lasted for 14 months when she had a serious medical emergency, was admitted to hospital for several weeks, and the discharged to a care home for rehabilitation care. No real chance of rehabilitation as she was believed to have an underlying cancer which would not be treated but it gave me time to realise that I could no longer give her the care she now needed
So I would say it can work but is hard work when the dementia progresses further. If I had the time again I would definitely make the same decision but would hope to do it better, with the knowledge I have gained about alzheimers disease from experience and this site.
Mum was diagnosed in the early stages of alzheimers in 2001. At that time she lived on her own 70 miles away from me and was fully capable looking after herself. In 2003 she decided that she wanted to move nearer to me so we sold her house and I found a sheltered bungalow for her about 3 miles away from where I lived. This worked reasonably well for nearly 7 years although she did find it lonely and I arranged day care for her 3 days a week. Unfortunately she then had a fall and broke her right arm just below the shoulder where it could not be put in plaster. She did however, make a good recovery as she started to use her arm as soon as the pain deceased and she continued to look after herself properly at home. However, a few months later she decided she wanted to return to live with her parents(both long deceased) in the midlands and started to wander. After a couple of incidents where she was spotted by the community police officer trying to make her way to the railway station to catch a train to the Midlands to be with her parents (both of course long deceased) it was clear that it was no longer safe to be on her own. I was working full time then and the daycentres were only open from 10am until 4pm so she moved to care home. She was not very happy there because she was fully capable of looking after herself, apart fro her desire to return to the Midlands.
A few months later my employer was looking for employees to volunteer for redundancy/ part time working. I volunteered for both and was accepted for part time working. It took months to arrange but after 10 months I went part time and Mum moved in with me. On the days I went to work she had day care in a local care home- she didn't want to go there but I knew she could not be left safely on her own. It worked well for three years, she didn't need personal care, was fully continent, my only problem was she wanted to go out all the time. I then decided to retire early and we moved to another part of the country where again she settled well and went to day care three days a week. This lasted for 14 months when she had a serious medical emergency, was admitted to hospital for several weeks, and the discharged to a care home for rehabilitation care. No real chance of rehabilitation as she was believed to have an underlying cancer which would not be treated but it gave me time to realise that I could no longer give her the care she now needed
So I would say it can work but is hard work when the dementia progresses further. If I had the time again I would definitely make the same decision but would hope to do it better, with the knowledge I have gained about alzheimers disease from experience and this site.
Think very carefully about this, at the moment she has 24 hour care, are you sure you can provide that?
If she doesn’t recognise home as home, will you be able distract her away from this?
If you are unable to sustain the care for your Mum do you think she would be able to return to the present care home?
Not trying to put you off from taking care of your Mum at home just want to make sure you have covered all eventualities.
If she doesn’t recognise home as home, will you be able distract her away from this?
If you are unable to sustain the care for your Mum do you think she would be able to return to the present care home?
Not trying to put you off from taking care of your Mum at home just want to make sure you have covered all eventualities.
For me it was the nights ‘wot done me in’. If I could have got some sleep, I would have been able to carry on. But my husband simply doesn’t stay in bed for more than an hour or so at a time. Then he is up wandering...and is liable to pee anywhere, so at home, I was up and following him around.
Is it worth talking to the care home about ways to make her feel happier there? It might well be that she just wouldn't be happy anywhere, and if she doesn't recognise her home as home anymore she might be distressed at the move. Is there anyway you could have her home for a week or two and if it didn't work out she could go back to the care home?
Exactly the same with dad...it was the nights of continual pacing,getting dressed, trying doors, peeing and me not getting any sleep plus sent a curved ball of OH diagnosed with serious illness...my care could not be sustained. I hope it works for you but I would have serious reservations but if you are determined perhaps try respite at your house first...it may be worth paying for her room at the care home to be kept for a week or two if they would agree to find out if you could cope satisfactorily but be informed of the challenges furyher decline will bring.
I didn't say we had carers in place but they aren' there at 3:30am when she' trying to wear everything in her wardrobe. Day care was out as well because my mum would get undressed, of sorts, and get back in bed as soon as the carer had gone.
Ditto the above for me it was constant supervision my mum needed. My husband even considered packing in work as he earns less than we pay the care home. But we soon realised that wouldn' work.
Some people on the forum are complete unselfish angels and I don't know how they cope because I couldn't.
Ditto the above for me it was constant supervision my mum needed. My husband even considered packing in work as he earns less than we pay the care home. But we soon realised that wouldn' work.
Some people on the forum are complete unselfish angels and I don't know how they cope because I couldn't.
I think we are all angels and individually have our unique lines drawn in the sand and often it isn't so much because we can't carry on for our own selfish reasons often could not be further from that in the case of challenges already faced, but all too often the challenges eventually go way beyond what we have the ability and energy as one person to sustain. Sleep deprivation is so debilitating long term and Carmar's previous posts detail a completely unsustainable home caring role. An AS support worker I had who once visited during a particularly bad period of dad up all night summed it up "your dad looks well however you on the other hand" she wasn't being rude she was right..for pwd with challenging behaviour and not necessarily aggressive it can eventually take its toll on the primary carer.
I'm afraid I have to agree here. I looked after my mother as long as I possibly could but there came the time after several years that I was at the end of my tether. As someone said it's the 24/7 365 days a year which gradually wears one down.
Yes your Mum tells you she is unhappy, but that may well be her way of communicating her feelings about her disease. Even if you moved her in with you she might well still complain she's unhappy. It sort of comes with the illness. They want and desire a 'happier time/place' but when presented with options they are equally unhappy.
By the way, if you're living in your mother's home are you paying a 'realistic rent? If not this may cause problems down the line. She would lose the reduced Council Tax rate and you'd be covering more bills for water, electic, gas etc.
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+1 from me.
Don't take her out permanently, maybe drive her around the area, see what she recognises. That will give you an idea of what she refers to as "home".
Be aware that the amount of work you are thinking of taking on, is the equivalent of all the care home staff put together. Forget 8hr shifts, forget lunch/tea breaks, forget off duty, forget "Me Time".
Bod
I've got to agree with most of the replies on here and be just as honest. Your not superwoman, no-one is, you will never be able to give your mum the care she needs and keep your own health and sanity and by the nature of the disease, things will never get better, they will just get worse.
Give her a little 'holiday' visiting you if you think it will help, but please don't remove her permanently.
Give her a little 'holiday' visiting you if you think it will help, but please don't remove her permanently.
I look after my mum at home, with care support. I couldn't do it without the support but that took some time to organise. Could you:
- bring your mum up during the day and back to the care home at nights? (for a few weeks to see if it worked)
- check out what care support you would be entitled to and then what care you think you could make a case for over and above that and be prepared to put some effort and patience into getting this?
- get the OT up to check out the house for suitability?
- could you take her out home for a few weeks (as someone above said) to see if she settles?
- get some blood tests etc to check that the restlessness isn't caused by a physical problem?
- is there sufficient company and are there enough activities in that carehome or are others in the area better?
- have you worked out a day a week away for yourself if the costings etc all worked out?
Big decisions but you want no regrets so hopefully you can keep both plates spinning until you know which is the best way. Good luck ...
- bring your mum up during the day and back to the care home at nights? (for a few weeks to see if it worked)
- check out what care support you would be entitled to and then what care you think you could make a case for over and above that and be prepared to put some effort and patience into getting this?
- get the OT up to check out the house for suitability?
- could you take her out home for a few weeks (as someone above said) to see if she settles?
- get some blood tests etc to check that the restlessness isn't caused by a physical problem?
- is there sufficient company and are there enough activities in that carehome or are others in the area better?
- have you worked out a day a week away for yourself if the costings etc all worked out?
Big decisions but you want no regrets so hopefully you can keep both plates spinning until you know which is the best way. Good luck ...
I can only reiterate what everyone else has said.
To be totally honest I saw your post when no one had replied but didn't reply straight away as I felt my response would be too negative and felt I would let others respond first.
I know you are considering this with the best of intentions but as someone else said your Mum's unhappiness is due to her age and confusion. You say you are lucky that you can offer support now until she needs more help. Is it fair to then withdraw your help? You say about help from social services but again the help they offer comes on their terms with regard to amount of hours and times that are suitable to you. You say obviously it will effect me so I have thought long and hard but you have no idea the extent it will completely hold your life hostage.
I looked after my Mum for 8 years in my home and for 7 of those years were fine but the last year was so hard for me as I was also caring for my disabled daughter but taking her out of the equation I still could not have carried on. My Mum would call me many times in the night so I got no sleep. This may have been a phase that would have passed but I had to admit defeat. I could not carry on. I had contacted social services to say I wasn't coping and they did get back to me- 3 months after my original call.
You asked for opinions and got them, what you do next will be down to you.
To be totally honest I saw your post when no one had replied but didn't reply straight away as I felt my response would be too negative and felt I would let others respond first.
I know you are considering this with the best of intentions but as someone else said your Mum's unhappiness is due to her age and confusion. You say you are lucky that you can offer support now until she needs more help. Is it fair to then withdraw your help? You say about help from social services but again the help they offer comes on their terms with regard to amount of hours and times that are suitable to you. You say obviously it will effect me so I have thought long and hard but you have no idea the extent it will completely hold your life hostage.
I looked after my Mum for 8 years in my home and for 7 of those years were fine but the last year was so hard for me as I was also caring for my disabled daughter but taking her out of the equation I still could not have carried on. My Mum would call me many times in the night so I got no sleep. This may have been a phase that would have passed but I had to admit defeat. I could not carry on. I had contacted social services to say I wasn't coping and they did get back to me- 3 months after my original call.
You asked for opinions and got them, what you do next will be down to you.
How lucky are you to be able to take lots of breaks. Most of us do this day in and day out without a break! Most of us are exhausted. Really exhausted!
I wasn’t sure from your original post if your mum is distressed and unhappy when you are not there. I know this is probably the very last thing you want to hear, but it has certainly been the case for other TP members that their loved ones settled better in care homes when they did not visit every day. It seems sometimes to be the case that people are reminded of their previous lives more when family visit very frequently and if they rely totally on family for company they don’t form any new relationships with either other residents or carers in the home. Maybe discuss this with the staff if you haven’t already.
I would agree with others that you should test this out for a short visit before making a final decision and giving up her care home place. At least a week or two though or it wouldn’t be a realistic test for either of you..
I can’t say my mum was happy in her care home particularly but she was very miserable at home too and was at least safe. I personally was happier being a loving daughter than being a hands-on personal carer and I coped much better once I realised that it wasn’t in my gift to make mum happy; the illness took that option away.
I would agree with others that you should test this out for a short visit before making a final decision and giving up her care home place. At least a week or two though or it wouldn’t be a realistic test for either of you..
I can’t say my mum was happy in her care home particularly but she was very miserable at home too and was at least safe. I personally was happier being a loving daughter than being a hands-on personal carer and I coped much better once I realised that it wasn’t in my gift to make mum happy; the illness took that option away.
Thank you so much for this. So nice to know it can work and you don't regret. I already know I don't want to do this long term when the dementia progresses, and mum is more dependent, as at some point I want to go home to my home, husband and life in Brighton, and also to working, still so much I want to do with my own life. But while she is lucid and extremely distressed at the care home (and I have no doubt a lot of the distress is directly connected to her feelings of being imprisoned, and being left there) she seems like she could really benefit from lots of activities that keep her more in the present moment, having family around, and living in what feels like a home. I might be able to help with all of that.
I can't help wondering what brought about the decision for your mum to move into a care home those two and a half years ago ... and what is so different now
and
you also say you
and
- what if you can't ?
you also say you
- please discuss this with the care home staff - your mum may well still feel imprisoned in the property you call home but she no longer recognises as her home - she may turn the 'blame' for that on you as the one who is with her all the time - she may indeed be feeling imprisoned by her dementia and that will be with her wherever she is
Dear Carnar Thank for taking the time to respond. I completely agree about sleep deprivation. That's why we are doing a month's trial, and keeping the care home room going during this period so mum can go back if it doesn't work. I don't cope well with sleep deprivation.
I am planning to have breaks from my mum in the day otherwise I will be exhausted quite soon, and I know I couldn't cope. I will also plan to spend lots of time doing activities that both her and I like. I will spend the money she is currently paying on the care home to pay for carers to look after her in the day for a few hours. I wouldn't contemplate doing this without the breaks.
I should have made it clearer in my original post, the decision is already made. I have already been thinking about it for 2.5 years. I am going to do it, I hope it works, and am looking for advice about what I need to put in place and to think about as I plan this. I already have lots of ideas, but just wondering if anybody has taken their parent or someone they care for out of a care home.
I know first hand how tough it is, and have become serious ill three times (twice requiring hospitalisation) when I was also trying to hold a full time job.
Thanks and good luck with your caring role.
