Struggling - mum refusing carers

[Hjm]

Hi, first time posting on here, (sorry for the long post).
My mum is 78 with mixed dementia, I would say she’s on the mild side of moderate stage.
I don’t have any siblings, live 35-45 mins away and have a 2 & 5 year old. My mum has 1 friend (but he is visiting less these days) so there is little support. I visit my mum twice a week.
Past 6 months ago, she has less insight into her difficulties, is missing some tablets more often, lost her blister pack with 3 days worth of tablets. No longer cooking. Never wants to leave the house, won’t go to any groups etc.
Dr said she should have carers to help with her meds. Arranged a private carer to come in once a day just to check all ok with meds & heat up a meal etc.
My mum is soo angry about this, thinks it’s all my fault, has said some hurtful things to me which is hard to hear even though I think most of it could be the condition. She is adamant she doesn’t need any help with her meds or anything else as she’s an intelligent woman.
At first she was letting the carers in and just ignored them, acted frosty & refused meals. Now she is refusing to let the carers in!
We have had a social worker in who agreed she would benefit from carrying on with the carer (my mum reluctantly agrees then forgets she has soon afterwards).
I’m guessing my mum’s capacity fluctuates but even if she doesn’t have the capacity with regards to the carers I’m guessing there isn’t much they can do anyway if the person is flat right refusing to let them in?
I will contact the social worker again on Monday. But has anybody else been in a similar situation and how did things pan out?
I don’t know what to do as I feel like she could potentially get into a state/become ill if not taking her tablets correctly.
I feel frustrated and a bit angry (which I know I shouldn’t) that it’s all falling on me and I could do with some support eg carers helping out. Practically I can’t be there all the time but I feel guilty that I’m not there enough, but it’s all taking a toll on my mental health especially with the anger towards me and her reluctance to have anyone pop in.
Thanks for reading, I don’t know anyone in a similar situation that I can vent to!

 

[yoy]

Could you try "love lies" and tell her that the carers coming in are to help you out rather than her 😉 ?

 

[Hjm]

Could you try "love lies" and tell her that the carers coming in are to help you out rather than her 😉 ?

Thanks for your reply, I could give it a try although I can see her saying that I don’t need to do anything for her so why would I need help 🤦‍♀️.
I’ll give it a go though, thank you 😊

 

[Kristo]

I’m assuming that as you are in contact with a social worker that you have already had a care needs assessment for your mum, plus a carer’s assessment for yourself?

Once we had that done, we told Dad that social services/doctor had said that he needed the care. He accepted that (not without some anger) but although he is now in a care home he still insists that there is nothing wrong with him - he thinks he works there!

Regardless, he is safe and cared-for now, so we just had to ignore the horrible things that he said to us, and he is actually much happier with the care staff than he ever was at home. Good luck x

 

[Mumlikesflowers]

I agree, there is some mileage in the concept 'I worry about you and it would help me, do it for me'. Although that's not going to carry all before it. My experience is you have to start enabling change without letting them the PWD in on it all. Unless she does something like leave key on inside, then someone could just let themselves in with a key from a keysafe and you don't necessarily tell her where the keysafe is or that there is one. Keysafes make good sense because she wouldn't be able to come to the door if she was poorly in any case.

I'm not sure I'd want some random person in a strange blue top appearing in my home for half an hour without any rapport building. Not easy to work on this with a care agency who have a short time to do certain tasks, but ideally the first step would be to start building trust in a stranger being there. What would happen if one of the carers' visits was an hour of social support - just chatting about whatever is her strongest topic - for my Mum it's her childhood and her being a good student. Or if they played some music - in my work I used to listen to Dean Martin with one woman most times I visited, music's such a point of recognition and connection for a lot of people with dementia.

 

[Fi Fi]

Hi, first time posting on here, (sorry for the long post).
My mum is 78 with mixed dementia, I would say she’s on the mild side of moderate stage.
I don’t have any siblings, live 35-45 mins away and have a 2 & 5 year old. My mum has 1 friend (but he is visiting less these days) so there is little support. I visit my mum twice a week.
Past 6 months ago, she has less insight into her difficulties, is missing some tablets more often, lost her blister pack with 3 days worth of tablets. No longer cooking. Never wants to leave the house, won’t go to any groups etc.
Dr said she should have carers to help with her meds. Arranged a private carer to come in once a day just to check all ok with meds & heat up a meal etc.
My mum is soo angry about this, thinks it’s all my fault, has said some hurtful things to me which is hard to hear even though I think most of it could be the condition. She is adamant she doesn’t need any help with her meds or anything else as she’s an intelligent woman.
At first she was letting the carers in and just ignored them, acted frosty & refused meals. Now she is refusing to let the carers in!
We have had a social worker in who agreed she would benefit from carrying on with the carer (my mum reluctantly agrees then forgets she has soon afterwards).
I’m guessing my mum’s capacity fluctuates but even if she doesn’t have the capacity with regards to the carers I’m guessing there isn’t much they can do anyway if the person is flat right refusing to let them in?
I will contact the social worker again on Monday. But has anybody else been in a similar situation and how did things pan out?
I don’t know what to do as I feel like she could potentially get into a state/become ill if not taking her tablets correctly.
I feel frustrated and a bit angry (which I know I shouldn’t) that it’s all falling on me and I could do with some support eg carers helping out. Practically I can’t be there all the time but I feel guilty that I’m not there enough, but it’s all taking a toll on my mental health especially with the anger towards me and her reluctance to have anyone pop in.
Thanks for reading, I don’t know anyone in a similar situation that I can vent to!

Hi I am in the same position with my mum who has had a recent diagnosis of Alzheimer’s and dementia . It is affecting every aspect of my life and I feel helpless !! Everything I do for my mum is wrong and she can be quite hurtful . I know people tell me it’s not my mum but the disease but this doesn’t really help when you are trying to care for them . Everyday we loose a bit of mum but everyday I feel I am loosing a bit of me too . I have no energy or zest left . I think you have to keep pushing for support and fighting to get the best for your mum but also remember to try and make time for you as without you they have no one to fight for them . So be kind to yourself and take as much support as you can get .

 

[Hjm]

I’m assuming that as you are in contact with a social worker that you have already had a care needs assessment for your mum, plus a carer’s assessment for yourself?

Once we had that done, we told Dad that social services/doctor had said that he needed the care. He accepted that (not without some anger) but although he is now in a care home he still insists that there is nothing wrong with him - he thinks he works there!

Regardless, he is safe and cared-for now, so we just had to ignore the horrible things that he said to us, and he is actually much happier with the care staff than he ever was at home. Good luck x

Thanks for your reply. Yes my mum has had a care needs assessment but I haven’t had a carers assessment. Thanks for the reminder I’ll ask for one to see if it could help!
I’ve told my mum the carers were the Drs decision then she just starts swearing about the Dr 😬. But she can’t remember seeing the Dr about it so thinks I’m involved.
Yes I need to get better at ignoring the horrible things she can say.
I’m glad your dad is happier at the care home x

 

[Hjm]

I agree, there is some mileage in the concept 'I worry about you and it would help me, do it for me'. Although that's not going to carry all before it. My experience is you have to start enabling change without letting them the PWD in on it all. Unless she does something like leave key on inside, then someone could just let themselves in with a key from a keysafe and you don't necessarily tell her where the keysafe is or that there is one. Keysafes make good sense because she wouldn't be able to come to the door if she was poorly in any case.

I'm not sure I'd want some random person in a strange blue top appearing in my home for half an hour without any rapport building. Not easy to work on this with a care agency who have a short time to do certain tasks, but ideally the first step would be to start building trust in a stranger being there. What would happen if one of the carers' visits was an hour of social support - just chatting about whatever is her strongest topic - for my Mum it's her childhood and her being a good student. Or if they played some music - in my work I used to listen to Dean Martin with one woman most times I visited, music's such a point of recognition and connection for a lot of people with dementia.

Thanks for the reply. We have put a keysafe in but I’m guessing the carers would only use it if she doesn’t answer the door.
Yes I’m not sure the uniform actually helps with my mum. She’s never been a social person (and now says she hasn’t got anything to say to anyone) but it’s an idea I could maybe be there to let them in and then leave them to it/be in the background. Thank you

 

[Hjm]

Hi I am in the same position with my mum who has had a recent diagnosis of Alzheimer’s and dementia . It is affecting every aspect of my life and I feel helpless !! Everything I do for my mum is wrong and she can be quite hurtful . I know people tell me it’s not my mum but the disease but this doesn’t really help when you are trying to care for them . Everyday we loose a bit of mum but everyday I feel I am loosing a bit of me too . I have no energy or zest left . I think you have to keep pushing for support and fighting to get the best for your mum but also remember to try and make time for you as without you they have no one to fight for them . So be kind to yourself and take as much support as you can get .

Thanks for your reply and sorry to hear you’re having a tough time too!
It’s hard to hear hurtful things from your mum…..as they’re still your mum 🙁.
Thanks I think I’ll try & have more of a break this weekend, hope you’re able to answell and you have some support.