Really need some advice on what we should do... things are getting a bit out of hand

[trying-to-help]

Hi,
I hope everyone is having a pleasant weekend. I'm a 40 something dad to a couple of young babies which keeps me pretty occupied as you can imagine. Unfortunately my partners mother was also recently diagnosed with alzeimers. She was showing signs for quite a while but the stress of lock down and moving house seems to have accelerated the trend. She's now finding it fairly difficult to do the most basic tasks like getting ready in the morning and unfortunately loses her way a fair bit and needs quite a lot of attention.
The challenge is that her life partner is finding the whole situation extremely stressful. I can imagine it must be extremely challenging but unfortunately he also doesn't have a huge amount of patience and snaps at her routinely. Apparently she has also hit him several times in the last few months.

We've tried to suggest that he gets some help but apparently he doesn't want to pay the cost of the care. It's putting enormous stress on my partner who constantly gets really frightening messages about what's happening and it routinely brings her to tears. She's also obviousy impacted when the little ones come to her as well which I feel the pain from at times because they're just too young to understand what's going on...

We'd go over to see them but they're 1hr 30 mins away in the car on a good run and that's quite a lot of driving stress on my partner to do a round trip and staying over just isn't a welcome or nice environment for her or the kids at times when her mom isn't doing well.

We're both worried about where this is going to end but with my partners dad not wanting to take any action but also being utterly overloaded with stress I'm at a complete loss for what we can do...

I'd really appreciate some advice and I'm really hoping someone has been in a similar situation and has found a way out..

Thank you for taking the time to read this.

Kind Regards

 

[backin]

Council tax disregard and attendance allowance will fund a few hours care a week.

 

[yoy]

If it was me, to get them on the radar, I would be tempted to write to their GP and also their local social services department, detailing exactly what is going on, how you are not able to help and stress that you are worried about them both being vulnerable and possibly not safe. Some people on here have had some success with really switched on GP's who have invited the patient in for a "wellness check" 😉 or some such thing to get the ball rolling with help. And social services certainly need to know about their vulnerability if they are not coping or putting themselves or each other at risk.

 

[Kristo]

I agree about contacting their GP, it can be really tricky to get the main carer to admit how tough things have got, they tend to still see their loved-one as they were and either can’t or won’t acknowledge how much the illness has impacted.

Be prepared to persevere, my mum’s initial reaction when I suggested speaking to GP or Social Care was “don’t call the social on us, they’ll take him away from me” which I think could be a generational opinion! No-one wants to admit that they need help, and also your mother-in-law will say no to every offer of support too, because the illness makes them automatically say no to everything.

Good luck, it’s a tough time for you all, especially with such little ones to care for too x

 

[trying-to-help]

Council tax disregard and attendance allowance will fund a few hours care a week.

Thank you @backin I will look into this. I remember my partner saying that they didn't qualify for something but I'll check these out ASAP.

 

[trying-to-help]

If it was me, to get them on the radar, I would be tempted to write to their GP and also their local social services department, detailing exactly what is going on, how you are not able to help and stress that you are worried about them both being vulnerable and possibly not safe. Some people on here have had some success with really switched on GP's who have invited the patient in for a "wellness check" 😉 or some such thing to get the ball rolling with help. And social services certainly need to know about their vulnerability if they are not coping or putting themselves or each other at risk.

What would the ball rolling look like after a GP has seen her @yoy ?

What would social services potentially then do as well? Thank you so much for the help on this.

 

[trying-to-help]

I agree about contacting their GP, it can be really tricky to get the main carer to admit how tough things have got, they tend to still see their loved-one as they were and either can’t or won’t acknowledge how much the illness has impacted.

Be prepared to persevere, my mum’s initial reaction when I suggested speaking to GP or Social Care was “don’t call the social on us, they’ll take him away from me” which I think could be a generational opinion! No-one wants to admit that they need help, and also your mother-in-law will say no to every offer of support too, because the illness makes them automatically say no to everything.

Good luck, it’s a tough time for you all, especially with such little ones to care for too x

Thanks @Kristo it really is tough my poor partner is really suffering not to mention her mum and dad. This is the other part of the problem. Without us around to frame the visitor its not being handled well and she's very resistant to the attempts we've made so far...

 

[backin]

Thank you @backin I will look into this. I remember my partner saying that they didn't qualify for something but I'll check these out ASAP.

Neither are means tested

 

[yoy]

What would the ball rolling look like after a GP has seen her @yoy ?

What would social services potentially then do as well? Thank you so much for the help on this.

It's difficult say for sure, but it sounded from your post as though they are both displaying or experiencing anxiety, and agitation if not aggression. He maybe getting worked up and feeling unable to cope and she may be frightened, knowing something's wrong but is unable to figure it out. The GP may be able to prescribe meds to calm these traits down.
With regards to SS, again, difficult to say. But a social worker could do a care assessment for her to see what help she needs, and a carers assessment for him. Your post doesn't mention their financial situation - if they are below the LA threshold the social worker can do a financial assessment and they may get help towards the costs. Of course if they refuse help then they can't be forced into it. But, if they are not coping well now, as the dementia progressess there may be other issues cropping up and they will at least be on SS's radar.
Also, does anyone have LPA for them? If they are both in denial, if things do get worse, things may have to be taken out of their hands for there own safety - better you making the decisions than the LA or medical profession perhaps? If you read around this forum many people state that there often comes a time when you have to implement things the things they "need" rather than what they "want". Good luck with it all.

 

[trying-to-help]

Neither are means tested

Amazing. I'll pass this onto my partner and hopefully we can set these up. That will be a real help thank you @backin

 

[Jools1402]

When filling out the form for Attendance Allowance - don't lie - but don't hang back, describe them at their worst.

 

[SeaSwallow]

Amazing. I'll pass this onto my partner and hopefully we can set these up. That will be a real help thank you @backin

If you are applying for attendance allowance, it might be useful to ask your local AgeUK or Citizens Advice for help completing the forms, it is easy to underestimate how much help is needed by the person with dementia.

 

[trying-to-help]

It's difficult say for sure, but it sounded from your post as though they are both displaying or experiencing anxiety, and agitation if not aggression. He maybe getting worked up and feeling unable to cope and she may be frightened, knowing something's wrong but is unable to figure it out. The GP may be able to prescribe meds to calm these traits down.
With regards to SS, again, difficult to say. But a social worker could do a care assessment for her to see what help she needs, and a carers assessment for him. Your post doesn't mention their financial situation - if they are below the LA threshold the social worker can do a financial assessment and they may get help towards the costs. Of course if they refuse help then they can't be forced into it. But, if they are not coping well now, as the dementia progressess there may be other issues cropping up and they will at least be on SS's radar.
Also, does anyone have LPA for them? If they are both in denial, if things do get worse, things may have to be taken out of their hands for there own safety - better you making the decisions than the LA or medical profession perhaps? If you read around this forum many people state that there often comes a time when you have to implement things the things they "need" rather than what they "want". Good luck with it all.

Thanks @yoy that's really helpful and useful. Especially about calming the traits down. She was given some dementia medication but she stopped taking it because it gave her a bad stomach apparently so I'm not sure how well taking medication will go but it's worth a try.

Apparently they have more savings than a certain threshold so they'd have to pay for any care they had. Unfortunately her mom is still relatively young (mid 60's) and she's physically quite well at the moment so I think they'd have quite a long spell of care to cover. I'd imagine more than all their savings and what they have in the house equity. At that point I guess they'd qualify for the free care I guess. The problem at the moment is that my partners dad seems very reluctant to spend any money (I think he's feeling very bitter about the whole situation) so it's very tricky but hopefully some of the free care that @backin mentioned my partner has applied for will definitely help, hopefully get them back into some half reasonable state of mind to think things through properly.

I will mention the social services assessment but I think her dad will not want to go down that route because of the getting out of their hands part. I think both her parents are mildly on the autism spectrum (undiagnosed) so a high degree of certainty and control over things is very important to them.

I'll have to think about how that might be possible another way. I agree on doing what's needed rather than what's necessarily wanted but at the moment it's a very difficult call on the path of least pain for them...

 

[trying-to-help]

When filling out the form for Attendance Allowance - don't lie - but don't hang back, describe them at their worst.

Thanks @Jools1402 - I'd have written it with my partner but she'd already filled it out after I mentioned it. Hopefully she didn't miss any of the detail... I feel like she has a tendancy to miss out details that are very personal and painful and stick to the basic facts which doesn't really tell the full picture very well. I hope I'm wrong,

 

[trying-to-help]

If you are applying for attendance allowance, it might be useful to ask your local AgeUK or Citizens Advice for help completing the forms, it is easy to underestimate how much help is needed by the person with dementia.

Thanks for this @SeaSwallow. This is great advice but she'd already filled it out. Fingers crossed it's enough.

 

[maggie6445]

If you are applying for attendance allowance, it might be useful to ask your local AgeUK or Citizens Advice for help completing the forms, i

I was very disappointed with age UK as I've seen advice to contact them for help in completing these forms.
I went into our age UK shop for help. I was told they would arrange for someone to contact me. A very quick phone call followed where I discussed what I thought was an answer to the first question. I was told. " perfect carry on the same sort if thing for the others". End of phone call . Pretty useless ,frankly!

I'm still waiting to hear back from DWP.

I hope others get more support x

 

[SeaSwallow]

I was very disappointed with age UK as I've seen advice to contact them for help in completing these forms.
I went into our age UK shop for help. I was told they would arrange for someone to contact me. A very quick phone call followed where I discussed what I thought was an answer to the first question. I was told. " perfect carry on the same sort if thing for the others". End of phone call . Pretty useless ,frankly!

I'm still waiting to hear back from DWP.

I hope others get more support x

Some places seem to be better than others, it is disappointing when the support is not available.

 

[yoy]

Thanks @yoy that's really helpful and useful. Especially about calming the traits down. She was given some dementia medication but she stopped taking it because it gave her a bad stomach apparently so I'm not sure how well taking medication will go but it's worth a try.

Apparently they have more savings than a certain threshold so they'd have to pay for any care they had. Unfortunately her mom is still relatively young (mid 60's) and she's physically quite well at the moment so I think they'd have quite a long spell of care to cover. I'd imagine more than all their savings and what they have in the house equity. At that point I guess they'd qualify for the free care I guess. The problem at the moment is that my partners dad seems very reluctant to spend any money (I think he's feeling very bitter about the whole situation) so it's very tricky but hopefully some of the free care that @backin mentioned my partner has applied for will definitely help, hopefully get them back into some half reasonable state of mind to think things through properly.

I will mention the social services assessment but I think her dad will not want to go down that route because of the getting out of their hands part. I think both her parents are mildly on the autism spectrum (undiagnosed) so a high degree of certainty and control over things is very important to them.

I'll have to think about how that might be possible another way. I agree on doing what's needed rather than what's necessarily wanted but at the moment it's a very difficult call on the path of least pain for them...

I can see what you are saying and you all have my sympathy. If they continue to refuse help it will probably only be resolved somehow when things get so out of hand that a crisis occurs. It's awful and so stressful when you know your loved ones are suffering. Remember to try to stay strong and support each other through it - caring for someone with dementia is just something else because it only ever gets worse.

 

[Jay M]

Apparently they have more savings than a certain threshold so they'd have to pay for any care they had. Unfortunately her mom is still relatively young (mid 60's) and she's physically quite well at the moment so I think they'd have quite a long spell of care to cover. I'd imagine more than all their savings and what they have in the house equity. At that point I guess they'd qualify for the free care I guess. The problem at the moment is that my partners dad seems very reluctant to spend any money (I think he's feeling very bitter about the whole situation) so it's very tricky

As far as I know it would only be her money, not his, that would go towards her care and the house would be disregarded as long as they live in it. Others here on the forum know a lot more about this than me though. Have you seen this part of the Alzheimer Society's pages?

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

 

[LadyLouise]

As far as I know it would only be her money, not his, that would go towards her care and the house would be disregarded as long as they live in it. Others here on the forum know a lot more about this than me though. Have you seen this part of the Alzheimer Society's pages?

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

This is a great point. I would just add, the person in need of care has a right for their income and their share of joint assets to be used for their needs. Their partner has no right to veto this. For the husband to refuse use of the wife’s money to be used to pay for care that she needs is coercive and controlling behaviour, which is a crime in UK law. It sounds like your FIL is acting out of fear and denial rather than an established pattern of control, however it might make your partner feel more empowered to intervene to get your mum the care she has a right to. Best of luck in this tricky situation.