Refusing Help - how do we get help?!

[Jemi24]

My mum was diagnosed with Alzheimer's in December 2022 (probably not as early as she would've been if it weren't for the pandemic so not sure where exactly she is with the disease). She lives with my dad who is her sole carer and who is really struggling now. Mum is having trouble using the bathroom and is refusing the bath/shower and isn't changing her clothes.

My sister and I finally got our dad to get a carer in twice a week to help in the mornings but so far, it is yet to make an impact and my mum has been quite resistant. Apparently when the carer arrived last time, she just put on her shoes and walked out with the lady chasing after her. She doesn't like the idea of respite or any care support but isn't really able to articulate much when it comes to how she is feeling beyond a 'no'.

My dad is also reluctant to pay the money for respite or any other support as any benefits will take time to have any impact. In the meantime, he is still doing all the legwork but paying for somebody to come in.

We just don't seem to have that many options, and it is really hard with my mum refusing lots of things. Can anyone offer a similar experience and tell me what you have done? I don't want to (and can't) force my mum to do anything, but I am really worried my dad is going to have some sort of breakdown from the pressure of it all. I can only imagine how unhappy it is at home and obviously it isn't going to get any better.

Thank you for any replies.

 

[SRG]

Im sorry to hear this as it is exactly the same situation for my brother and i, i have no answers and feel your frustration. x

 

[Kristo]

I have been where you are - I encouraged (nagged) them to attend carers support dementia cafe so that mum could chat to others in a similar situation. They helped her to apply for attendance allowance and backed me up with suggestions of getting a befriending service or some respite to give mum a break from caring.

Dad has been very resistant to acknowledging his condition.

I booked a care needs assessment for dad, and the recommendation was for 28 days respite. I took dad to the care home today - heart wrenching because I know he would prefer to be at home but I am also so relieved that mum can finally get some sleep and recharge her batteries whilst dad is safe and well cared-for.

This is a long road to travel, you cannot please everyone but you do have to be able to consider BOTH parent’s needs, not just their wants. When your dad is exhausted and caring for mum day in, day out, he is too close to the situation to be able to think clearly and make objective decisions on behalf of your mum, especially if she is resistant to any support or care from strangers. Be prepared to keep nagging, your concern comes from a place of love, not judgement, and deep down they will know that, they just don’t want to acknowledge the massive impact that this disease is having on all your lives. Good luck, and keep using the forum, it is so helpful and supportive x

 

[wurrienot]

If your mum is reluctant to engage with the carer, could she take some of the other burdens from your dad- shopping, cooking, laundry etc. it would get them both used to having someone else around and at least your dad would be freed up to do the hands on caring.

 

[Jemi24]

Thank you so much for your replies. I knew there wouldn't be 'an answer' in terms of some magic bullet. I am actually here today with Mum while Dad is just out to get some head space. It feels good to do something helpful even though we are just sitting here in silence with the radio on. Getting her to brush her teeth felt like a win but can't make much progress with anything else like getting dressed or washed.
It is so hard but I really appreciate people taking the time to respond.

 

[Sirena]

A large part of it is striking lucky with the individual carer. When I got at-home care for my mother, I positioned it as a nice lady coming to do the things she found difficult (uncontroversial things, like carrying heavy shopping). Of course the carer did a huge amount more than that. Fortunately my mother instantly took to her. She had other carers she didn't like as much later on, but by that time she had got used to the idea of having help.

It would help your mum become familiar with the idea of someonelse helping around the house, if to begin with the carer does things which don't require personal contact. If you were there for a couple of visits it might bolster your mum's confidence. And if that carer doesn't work out, ask the agency if they can send a different one.

Has your dad applied for Attendance Allowance on behalf of your mum? It is well worth having, and it is backdated to the day you apply.

 

[Bod]

My mum was diagnosed with Alzheimer's in December 2022 (probably not as early as she would've been if it weren't for the pandemic so not sure where exactly she is with the disease). She lives with my dad who is her sole carer and who is really struggling now. Mum is having trouble using the bathroom and is refusing the bath/shower and isn't changing her clothes.

My sister and I finally got our dad to get a carer in twice a week to help in the mornings but so far, it is yet to make an impact and my mum has been quite resistant. Apparently when the carer arrived last time, she just put on her shoes and walked out with the lady chasing after her. She doesn't like the idea of respite or any care support but isn't really able to articulate much when it comes to how she is feeling beyond a 'no'.

My dad is also reluctant to pay the money for respite or any other support as any benefits will take time to have any impact. In the meantime, he is still doing all the legwork but paying for somebody to come in.

We just don't seem to have that many options, and it is really hard with my mum refusing lots of things. Can anyone offer a similar experience and tell me what you have done? I don't want to (and can't) force my mum to do anything, but I am really worried my dad is going to have some sort of breakdown from the pressure of it all. I can only imagine how unhappy it is at home and obviously it isn't going to get any better.

Thank you for any replies.

Would dad accept a cleaner coming in to help him with the housework?
Initially for the first few times the cleaner/carer would almost ignore mother, then start to offer a cup of tea, perhaps with a special biscuit.
Gradually building a relationship with mum.

Bod

 

[Jemi24]

A large part of it is striking lucky with the individual carer. When I got at-home care for my mother, I positioned it as a nice lady coming to do the things she found difficult (uncontroversial things, like carrying heavy shopping). Of course the carer did a huge amount more than that. Fortunately my mother instantly took to her. She had other carers she didn't like as much later on, but by that time she had got used to the idea of having help.

It would help your mum become familiar with the idea of someonelse helping around the house, if to begin with the carer does things which don't require personal contact. If you were there for a couple of visits it might bolster your mum's confidence. And if that carer doesn't work out, ask the agency if they can send a different one.

Has your dad applied for Attendance Allowance on behalf of your mum? It is well worth having, and it is backdated to the day you apply.

I actually brought the forms back with me - he had them but it was perhaps a bit overwhelming. I think if I do the bulk of it and just ask him specific questions then I could just send it back. We are in a bit of a grey area as regards LPA as my Dad really needs to get this done so he can sign on her behalf and get payments made into her bank account etc. That is on the list.

 

[Jemi24]

Would dad accept a cleaner coming in to help him with the housework?
Initially for the first few times the cleaner/carer would almost ignore mother, then start to offer a cup of tea, perhaps with a special biscuit.
Gradually building a relationship with mum.

Bod

That's a good idea. I think some of this is finding it hard to let people in and do things around the house but sounds like a good way to get around a stranger coming in.

 

[notwodaysthesame]

Mum wouldn't even discuss having a cleaner and we were trying to keep on top of things when we visited. Then her OT brought up the subject and hearing it from someone in a uniform made all the difference. A cleaner now goes in weekly

 

[SherwoodSue]

When you are doing the Attendance Forms, don’t hold back. Write up as though you were describing the worst possible day.

 

[Unknowndaughter01]

My mum was diagnosed with Alzheimer's in December 2022 (probably not as early as she would've been if it weren't for the pandemic so not sure where exactly she is with the disease). She lives with my dad who is her sole carer and who is really struggling now. Mum is having trouble using the bathroom and is refusing the bath/shower and isn't changing her clothes.

My sister and I finally got our dad to get a carer in twice a week to help in the mornings but so far, it is yet to make an impact and my mum has been quite resistant. Apparently when the carer arrived last time, she just put on her shoes and walked out with the lady chasing after her. She doesn't like the idea of respite or any care support but isn't really able to articulate much when it comes to how she is feeling beyond a 'no'.

My dad is also reluctant to pay the money for respite or any other support as any benefits will take time to have any impact. In the meantime, he is still doing all the legwork but paying for somebody to come in.

We just don't seem to have that many options, and it is really hard with my mum refusing lots of things. Can anyone offer a similar experience and tell me what you have done? I don't want to (and can't) force my mum to do anything, but I am really worried my dad is going to have some sort of breakdown from the pressure of it all. I can only imagine how unhappy it is at home and obviously it isn't going to get any better.

Thank you for any replies.

This sounds very familiar except you have managed to get carers in. My dad won't !

My dad is in denial and my mum swears there's nothing wrong.
I try to advise and help my dad but 25 yrs in nursing and been a manager of a 20 bed dementia Unit means I don't know what I'm talking about!
So my only advice is speak to the admiral nurses and know your not alone in this situation but it takes a crasis to get changed.