Hi, my mum is living with her partner just now after recently being diagnosed with early onset dementia and because of Covid restrictions. But we feel that her partner is starting to struggle. We have been communicating with her community nurse and as my mum doesn’t want to go back to her own house and wants a move , we have suggested sheltered housing and she is at present agreeable to that, but the nurse is advising very sheltered house as there are more supports in there. But we have been told this will all take time. As her partner needs some space we are suggesting she go back to her house and we get in carers to help her until sheltered housing is available, but she is resistant to this and wants to stay with her partner. Her house is in such a mess due to her moving stuff around all the time and losing things then saying people are stealing from her etc and then she would phone the police. We all live far away from her and her partner is a great support to her and us but as I said he needs to have some time to himself. We are hoping to go to her house and sort it before she moves back and make it minimalistic so she doesn’t lose so much, but she is saying she doesn’t want us to come and sort her house out as she will do it, but we don’t think she is able to as she just moves things around. Has anyone else experienced things like this and any advice would be great. Covid restrictions are holding us from going to her house. Regards purplegirl
Mum stubborn
- Thread starter Purplegirl
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Hello @Purplegirl, I've already replied to your other thread.
What you describe is very common so don't feel that you are alone.
People with dementia are often thought of as stubborn, or sometimes selfish, but the truth is that it's just a loss of cognitive ability reducing their ability to think as they once did. Dementia is a horrible thing.
Anxiety is a common bedfellow of dementia and this may be why your mum doesn't want to be parted from her partner. Indeed, there is a dementia behaviour known as shadowing where the person will literally follow someone like a shadow because of the anxiety and confusion they feel when alone. My wife won't even go to bed alone any more.
As to just moving things around, again common There seems to be a need to tidy the confusion that's in the persons head but a lack of knowledge as to what to do with things.
Items don't get 'lost', rather they are put away safe and then there whereabouts isn't remembered.
If you check out the Publications list I linked to my other reply you will find a lot of information about these behaviours so the list may be of interest to you.
A thread that is useful when it comes to talking to a person with impaired memory can be found with this link
forum.alzheimers.org.uk
What you describe is very common so don't feel that you are alone.
People with dementia are often thought of as stubborn, or sometimes selfish, but the truth is that it's just a loss of cognitive ability reducing their ability to think as they once did. Dementia is a horrible thing.
Anxiety is a common bedfellow of dementia and this may be why your mum doesn't want to be parted from her partner. Indeed, there is a dementia behaviour known as shadowing where the person will literally follow someone like a shadow because of the anxiety and confusion they feel when alone. My wife won't even go to bed alone any more.
As to just moving things around, again common There seems to be a need to tidy the confusion that's in the persons head but a lack of knowledge as to what to do with things.
Items don't get 'lost', rather they are put away safe and then there whereabouts isn't remembered.
If you check out the Publications list I linked to my other reply you will find a lot of information about these behaviours so the list may be of interest to you.
A thread that is useful when it comes to talking to a person with impaired memory can be found with this link
Compassionate Communication with the Memory Impaired
The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...
forum.alzheimers.org.uk
Sorry I can't offer much on your short term struggles @Purplegirl, but I can recommend extra care or very sheltered housing. My partner and I have been living in very sheltered housing for 4 years and having carers available at the press of pendant alarm is reassuring. Good luck.
hi @Purplegirl
a tricky situation for you all
personally, I think your mum's partner's wishes and needs have to be honoured, especially as he was kind enough to take her in and try to care for her, and has been brave let you know how things are for him ... difficult when this isn't what your mum wants
the current restrictions do allow you to travel to provide care and to do what's necessary to move house, so maybe just go ahead and sort out your mum's house, including putting in any aids that may help her
at the same time, contact her Local Authority Adult Services and tell them exactly what the situation is, explaining that your mum will be moving back and will be on her own and you are not able to provide nay hands on care .. ask for an urgent assessment of her care needs from which a care package will be suggested, which may include a visit to the property by an OT to suggest aids and adaptations as well as home care visits
just be aware, though, that if your mum refuses to have any support, the LA's hands are tied
if your mum has sufficient funds, you can go ahead and arrange home care visits and organise that she pay for them ... if you have LPAs in place, this will make things easier as you can legally help her to manage her affairs ... if not look into getting those asap
Paying for care and support in England | Alzheimer's Society
Lasting and enduring powers of attorney forms - GOV.UK (www.gov.uk)
I'd also speak with her GP?consultant, so they know how things are as there may be meds that can help her anxiety, and the GP needs to have an up to date picture of how your mum is
a tricky situation for you all
personally, I think your mum's partner's wishes and needs have to be honoured, especially as he was kind enough to take her in and try to care for her, and has been brave let you know how things are for him ... difficult when this isn't what your mum wants
the current restrictions do allow you to travel to provide care and to do what's necessary to move house, so maybe just go ahead and sort out your mum's house, including putting in any aids that may help her
at the same time, contact her Local Authority Adult Services and tell them exactly what the situation is, explaining that your mum will be moving back and will be on her own and you are not able to provide nay hands on care .. ask for an urgent assessment of her care needs from which a care package will be suggested, which may include a visit to the property by an OT to suggest aids and adaptations as well as home care visits
just be aware, though, that if your mum refuses to have any support, the LA's hands are tied
if your mum has sufficient funds, you can go ahead and arrange home care visits and organise that she pay for them ... if you have LPAs in place, this will make things easier as you can legally help her to manage her affairs ... if not look into getting those asap
Paying for care and support in England | Alzheimer's Society
Lasting and enduring powers of attorney forms - GOV.UK (www.gov.uk)
I'd also speak with her GP?consultant, so they know how things are as there may be meds that can help her anxiety, and the GP needs to have an up to date picture of how your mum is
