Dementia and sense of time

[Ivana2]

Hi there,
my mum suddenly got advanced dementia following a stroke that left her very disabled, she has been in a nursing home for the past 18 months. As her physical condition has improved and she has made it very clear that she wants to come home, we are arranging for her to come home. We can't wait to tell her because we know the news will make her very happy, but she doesn't seem to have a sense of time. The move is planned for mid November, and if we tell her now we are worried she may expect it to happen much sooner. My mum doesn't speak any more which makes it more difficult to understand what she's thinking, feeling and what questions she may have . Any suggestions on when it would be an appropriate time to tell my mum that she's coming home and any other advice on how to explain this to her would be very welcome.

 

[Gosling]

Hello @Ivana2 and welcome to this friendly and supportive forum.

I am sorry to read of your Mum's dementia, and the fact that she has been in a nursing home for 18 months. It is lovely that she has made such an improvement for her to be able to return home. That's great news. I am assuming you have arranged some form of care package appropriate to her needs, because it sounds as though it will be needed? Also, I am confused when you say she has made it clear she wants to come home if she is unable to speak anymore.
As for when to tell her, most people with dementia do not like change, it can frighten and upset them. so I would probably suggest leaving it till the last minute. If you say she can't speak anymore, the emotion of it all will stay inside and it could be very overwhelming for her.
I am sure others will be along with their suggestions shortly.

 

[canary]

I used to tell mum about things on the day that they were happening

 

[SeaSwallow]

Hello @Ivana2 and welcome to the Dementia Support Forum. I would also agree that you should only tell your mum that she is coming home at the very last minute.
However have you really thought about the implications of bringing your mum home. In the nursing home she would have had a team of people caring for her 24/7 with staff being able to go home and rest at the end of their shifts.
Even if you have carers coming in 3/4 times per day that would still mean that you are looking after your mum for up to 20 hours per day. It is something that i really think that you need to think about. If you find after a while that you cannot cope with your mum at home it would be even more unsettling for her to have to return to the care home.

 

[canary]

Gosh, @Ivana2 , I think it is very brave of you to decide to bring your mum home so that you can look after her.

A word of caution, though. Do you know which home she wants to go home to?
My mum, when she got to advanced dementia, started saying that she wanted to go home, but I discovered that the home she wanted to go to was actually her childhood home and she was expecting to find her (long deceased) parents and siblings waiting for her there.

Most people with dementia say that they want to "go home" - even the ones who are sitting in their actual own home! What they are really asking for is to go somewhere where they felt safe and they think that if they go there, then they will leave the confusion of dementia behind - not realising that they will simply take it all with them

 

[jac69]

I agree with Canary My older sister always wanted to go home but she lived with her husband in their own home once when I phoned and she said she didn't have a sister but spoke to me she said I was her old friend from school days and when she got home she would call in to see me. We realized then that home was a memory and she could never go home

 

[Jaded'n'faded]

Honestly? I would continue to tell your mum that she'll be going home 'soon' but I wouldn't actually do it. (E.g. as soon as you've fixed things up for her or as soon as the doctor says it's OK.)

She's been in a nursing home for 18 months and will be used to the routines and the staff. Moving her could be detrimental and as other have said, unless she has 24 hour care at home, how on earth will she manage? She may be somewhat improved since the stroke but she's becoming non-verbal - how will she communicate with carers? (And it's likely her improvement is partially due to the care of the staff - it may not continue at home.)

Please think very carefully about this. It's very common for people with dementia to express the wish to go home, but often it's just an idea, that if they go 'home' they will feel better, less confused. It's the dementia they're trying to get away from and 'home' is symbolic of somewhere safe, where things are always OK. It could be you move her back home and she no longer recognises it as home, insisting her home is somewhere else.

 

[Ivana2]

Hello @Ivana2 and welcome to this friendly and supportive forum.

I am sorry to read of your Mum's dementia, and the fact that she has been in a nursing home for 18 months. It is lovely that she has made such an improvement for her to be able to return home. That's great news. I am assuming you have arranged some form of care package appropriate to her needs, because it sounds as though it will be needed? Also, I am confused when you say she has made it clear she wants to come home if she is unable to speak anymore.
As for when to tell her, most people with dementia do not like change, it can frighten and upset them. so I would probably suggest leaving it till the last minute. If you say she can't speak anymore, the emotion of it all will stay inside and it could be very overwhelming for her.
I am sure others will be along with their suggestions shortly.

Many thaks for the suggestion, and yes we have arranged for a full time paid carer to look after my mum and there will also be her sister who is younger and in good health. We know my mum doesn't want to stay in the home because she comes home at the weekend, she is always very happy when we go to pick her up while she is clearly annoyed when we take her back, same when we visit her on the other days, she is always happy to see us but clearly sad and disappoitend when we leave.

 

[Ivana2]

Gosh, @Ivana2 , I think it is very brave of you to decide to bring your mum home so that you can look after her.

A word of caution, though. Do you know which home she wants to go home to?
My mum, when she got to advanced dementia, started saying that she wanted to go home, but I discovered that the home she wanted to go to was actually her childhood home and she was expecting to find her (long deceased) parents and siblings waiting for her there.

Most people with dementia say that they want to "go home" - even the ones who are sitting in their actual own home! What they are really asking for is to go somewhere where they felt safe and they think that if they go there, then they will leave the confusion of dementia behind - not realising that they will simply take it all with them

That's a really good point, my mum can't speak but we can see she finds it hard when leave after a visit or take her back to the nursing home after she has been at home where she comes every weekend. I think she wants to be with her family and is probably not too bothered where she is, as long as we are there.

 

[Ivana2]

Hello @Ivana2 and welcome to the Dementia Support Forum. I would also agree that you should only tell your mum that she is coming home at the very last minute.
However have you really thought about the implications of bringing your mum home. In the nursing home she would have had a team of people caring for her 24/7 with staff being able to go home and rest at the end of their shifts.
Even if you have carers coming in 3/4 times per day that would still mean that you are looking after your mum for up to 20 hours per day. It is something that i really think that you need to think about. If you find after a while that you cannot cope with your mum at home it would be even more unsettling for her to have to return to the care home.

Thanks for your reply, we will have a carer 8 hours a day and I'll share the rest of the care with my mum's younger sisiter who is in good health. We really hope that it will work and can afford to have even more paid care if necesary, there is still an element of risk but my mum is clearly so upset eveytime we leave her, that we have to try.

 

[rebeccaperth]

Thanks for your reply, we will have a carer 8 hours a day and I'll share the rest of the care with my mum's younger sisiter who is in good health. We really hope that it will work and can afford to have even more paid care if necesary, there is still an element of risk but my mum is clearly so upset eveytime we leave her, that we have to try.

Hi Ivana, how is it working out? I know one thing is for sure, when my mum sees me and I see her, we feel like we are at home with each other.
That bond with your Mum, as well as her frequently visiting your home on the weekends would have got her prepared for the transition yeah? I hope she is as happy as Larry at home with you guys. X