I feel so terribly helpless at the moment. Moved mum into her extra care flat 5 weeks ago. She's not doing very well at all, is desperately unhappy and in a total state of confusion. She is managing to sleep overnight most of the time now but with the help of sleeping tablets. I'm in a real quandary as to my next step. She owns her own home which is currently having a full renovation, the plan was to rent it for now as she was so unhappy there as well after dad passed away in February. I'm passifying her when she asks to go home with the fact that the builders are in but she questions me every day and is getting more intense and anxious. Should I think about taking her back when the house is finished? Yes it will be unrecognisable but it's still her house and I could arrange for overnight care and maybe do some nights myself. I'm hoping to get her into day care soon and she already goes to lots of groups. I'm just so worried that her being so stressed will tip her beyond the point of return. She can't go back for at least another 8 weeks by which time the damage will probably have been done. I'm on the verge of quitting work to care for her full time and just take her to live at mine until the house is ready but really don't know which direction to go with this. Any words of wisdom out there?
Just don't know what to do
- Thread starter Lynng
- Start date
If the house will be unrecognizable by her once the renovation is done, I do not see the point of taking her back there. Also, ff I were you, I would think long and carefully before quitting my job.
Believe it or not, your mother is still in the process of settling in to her new home. My mother first went to a retirement home and spent every night of the first 2 months packing up all her clothes and waiting to move. She slowly stopped the packing but it continued for ages.
Too much and constant change can be overwhelming and too much for a person with dementia. As hard as it is right now, personally I would try and hang in for another couple of months at least.
Believe it or not, your mother is still in the process of settling in to her new home. My mother first went to a retirement home and spent every night of the first 2 months packing up all her clothes and waiting to move. She slowly stopped the packing but it continued for ages.
Too much and constant change can be overwhelming and too much for a person with dementia. As hard as it is right now, personally I would try and hang in for another couple of months at least.
Dull, boring and routine seem to be the basic needs of PWD. This means that carers have to enter that world too which is why giving up work is not a great idea as you become isolated. She will probably never be entirely happy anywhere now so going back to an unfamiliar home won't be a solution. Give her time and support.
Day centres and alz groups are such a good way of keeping her socialised and anti depressants might ease her mood.
Day centres and alz groups are such a good way of keeping her socialised and anti depressants might ease her mood.
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I agree 100% with Marionq. I have up work and have been mum's full time carer for 2 and a half years and it was a mistake for both of us. Mum is very dependant on me, I cannot see friends or have any sort of social life as mum cannot be left alone and doesn't even like me taking on the phone or to the neighbours, she refuses all outside help and has refused to go to clubs which would buy me precious free time. Social services tell me mum cannot be forced to accept help so that's that. Had I been working I really think mum would have been more accepting of help and whilst the illness would be the same I think we'd both be in a better place with carers coming in and a regular routine of clubs. Being with mum 24/7 has built what seems to be an inescapable dependence.
We moved house a little over 2 and a half years ago, pre a dementia diagnosis. Mum does not see our house as her home and much as I struggle with this I have to accept this will not change. Home for mum is her childhood home, not our current home or even the property she lived in for more than 40 years before moving here. It's really sad. Everyone is different, but home is a place in my mum's head, the house she desperately wants was demolished in the 60s, but she's never going to accept that.
The really tricky part of bringing a PWD to live in your home is not knowing in advance what you later learn through experience!
We fortunately arranged for a morning carer before M-in-L moved in but there are other things that we didn't anticipate; like her quizzing us over where we'd been or where we were going; or expecting us to stay up very late at night...... I could go on. We don't regret the actual decision but do regret not being prepared, although it's difficult to see how we could have known otherwise.
At least you will, to some extent, have the benefit of other's experience through this forum. So I would advise that you really do some exploration of other people's thoughts, experiences and ideas before making such a big decision. As others have said, your mother may well settle after a while. I do hope so.
We fortunately arranged for a morning carer before M-in-L moved in but there are other things that we didn't anticipate; like her quizzing us over where we'd been or where we were going; or expecting us to stay up very late at night...... I could go on. We don't regret the actual decision but do regret not being prepared, although it's difficult to see how we could have known otherwise.
At least you will, to some extent, have the benefit of other's experience through this forum. So I would advise that you really do some exploration of other people's thoughts, experiences and ideas before making such a big decision. As others have said, your mother may well settle after a while. I do hope so.
My mum took ages - months - to fully settle into her extra care flat. She didn't take ownership of it and didn't recognise that the furniture, clothes, kitchen stuff etc. was her own. We sold her house and she now says she has no home, even a year on. However, she is a lot more settled and accepting. Moving someone with dementia causes a lot of confusion. I would say to you stick with it, she will eventually come to accept the situation. If you are sure that she has all the care she needs, do not think about giving up your job.
I sold my own house and gave up my full time job to move into my Dads bungalow to care for him. He couldn't do stairs so doing it the other way round wasn't an option. I do not recommend it! You also end up giving up your life, friendships and outside help. Even family give up offering support because you are there! I don't regret what I did but would I do it again knowing what I know now? No. And if she goes back home when the builders have finished you may still have to consider moving her again at a later date when she may be even less capable of coping. Give her more time. Lots of love xx
Thanks to you all for your thoughts. I will continue to muddle through for as long as we can, it's just so hard to see her so unhappy. I hoped this move would be for the better and I'm learning every day so thank you all so much for taking the time to respond. I'm not going to change anything for now and will give work a go I hope it works out because I do miss it.
I hate this disease so much and it's turning me into a different person, some of things I've said in temper have been awful I can't believe I can be so cruel sometimes, but then there are other times I can be such a comfort to her and we have had some lovely moments along the way. It's just the sheer hopelessness that gets me down, no light at the end of the tunnel, knowing things will just gradually get worse.
I wish my big brother was here to help, he died 2 years ago and it makes me feel very alone sometimes. I'm tired of organising funerals, sorting out affairs, taking flowers to the cemetery, both my brothers and dad have passed away over the last 7 years.
Feeling very sorry for myself now, probably the time of year. Wish you all a peaceful New Year and thanks again xx
LynnG I am so sorry for all your losses and your troubles with your Mum. You are dealing with this responsibility on your own while still grieving those other losses- not feeling sorry for yourself honey! How you feel is totally understandable. If you enjoy your job don't give it up. It connects you to the outside world and you will need that world when you do lose your Mum. I feel you want your Mum to be happy, but you can't do that.It is her illness which is causing her distress and you cant fix that unfortunately.
This difficulty may well pass and she will settle. Sending love and a hug xx
This difficulty may well pass and she will settle. Sending love and a hug xx
LynnG I am so sorry for all your losses and your troubles with your Mum. You are dealing with this responsibility on your own while still grieving those other losses- not feeling sorry for yourself honey! How you feel is totally understandable. If you enjoy your job don't give it up. It connects you to the outside world and you will need that world when you do lose your Mum. I feel you want your Mum to be happy, but you can't do that.It is her illness which is causing her distress and you cant fix that unfortunately.
This difficulty may well pass and she will settle. Sending love and a hug xx
Thanks Hun got your hug❤️
Sorry if this sounds negative but I really don't think 'Extra Care' or supported care housing is much good for people with dementia except at the early stages.
Even if the PWD manages in the beginning, it's a zero sum game and she's going to deteriorate. Then you have to move her again because the housing facility can't offer the necessary level of care.
She's being asked to adapt to a new place and new routines and layouts. That's a lot for a PWD to cope with.
You could up the number of agency visits, and daycare will help, but maybe you need to think about something more long term.
Even if the PWD manages in the beginning, it's a zero sum game and she's going to deteriorate. Then you have to move her again because the housing facility can't offer the necessary level of care.
She's being asked to adapt to a new place and new routines and layouts. That's a lot for a PWD to cope with.
You could up the number of agency visits, and daycare will help, but maybe you need to think about something more long term.
I have the same problem with my wife. We have lived her for 32 years but she still keeps packing up her art work to 'take home'. Strangely 'home' is in this village, just not this house. Sometimes she can even give this address as 'home'. Her childhood home was 120 miles away.
I wish I could understand what is going on in head.
