Really not coping now....

[Veritas]

@sunshine chrissy
I may be naive, but I don't get why you are having to pay for the day care while waiting for a financial assessment, especially as it must be pretty obvious that your husband qualifies for funding.

The situation you have been put in is completely unacceptable, and you should feel entirely free to make it clear that you can't continue like this. Your CPN should be able to help you get that message across, and soon. Throw that guilt away - it's not your fault (or his, for that matter) you are at the end of your tether - it's this horrible disease that you wouldn't wish on your worst enemy. You should be able to get the help you need, but the saddest thing of all is that the system is so broken that you may have to create a safeguarding emergency in order to do so.

 

[canary]

I've been writing notes for 2 years now,we see the consultant every 3 months,she's seen the decline and changes the meds every time,

Its not for the consultant that Im suggesting you keep notes, but for Social Services. You need to show that he is now at risk so that they will overrule his refusal of help/respite. The trouble is that you are destroying yourself trying to keep him safe and because it looks like you are succeeding, SS are letting you get on with it. If he is at "risk of harm or harming others" then SS will take action, but only then. So you have to show that this is what is happening.

 

[Thestruggleisreal]

Yes I can ring the hospital and ask for to call me,she's due to call tommorrow anyway.What's worrying me is he goes to daycare one day a week,been going for 8 weeks now,he loves it thank god😊We've not had a bill for it yet,it's £75 for the day,still waiting for a financial assessment,we've got no savings,they got wiped out when he lost his job 3 years ago,we lived on£77 a week jobseeker's allowance and my state pension(he's 62,I'm 70)It's keeping me awake at night about how we pay for care when the time comes.I'm on the verge of tears every single day lately.

Hello. You could make a claim for ESA & PIP for your husband while he’s under 65. You might also be able to receive some carers allowance or pension credit too. Please do no struggle.

 

[jennifer1967]

the other thing with pension credit is that both of you needs to be pensionable age. they changed it but i would check any way. is it worth going to age uk or cab just to make sure that you are claiming everything you are entitled to? if he has PIP then that wont be taken into account while claiming other benefits.

 

[sunshine chrissy]

Hello. You could make a claim for ESA & PIP for your husband while he’s under 65. You might also be able to receive some carers allowance or pension credit too. Please do no struggle.

We get ESA and PIP,not carers allowance because I get state pension,we're over the limit for pension credit,I've looked into everything believe me! I'm hanging in there for this financial assessment,been waiting since June despite many phonecalls,meanwhile he's declining by the day.

 

[sunshine chrissy]

If you have two weeks to wait or the mental health nurse @sunshine chrissy , is there any way you can contact her for an earlier appointment

She phoned me today,I told her everything and she's coming for a home visit tommorrow to see how things are,I must have made an impression with what I told her!!!

 

[Sonya1]

Yes I can ring the hospital and ask for to call me,she's due to call tommorrow anyway.What's worrying me is he goes to daycare one day a week,been going for 8 weeks now,he loves it thank god😊We've not had a bill for it yet,it's £75 for the day,still waiting for a financial assessment,we've got no savings,they got wiped out when he lost his job 3 years ago,we lived on£77 a week jobseeker's allowance and my state pension(he's 62,I'm 70)It's keeping me awake at night about how we pay for care when the time comes.I'm on the verge of tears every single day lately.

My understanding is that if that is your only income and you have no savings, then care costs will be met by your local authority. If you own your home, this will be disregarded for the financial assessment, ie. will not be counted as an asset, whilst you yourself are still living there. You need to tell the psych lady that you are AT carer breakdown and that you urgently need residential respite because you cannot manage his needs f0r 18-24 hours a day, 7 days a week and you feel you are both at risk because of your exhaustion and his challenging behaviours. PLEASE do this, you really must get yourself a break and some thinking space. Tell her anything you need to tell her to impress how urgent this is for you. Daycare should also be covered by social care if you don't have the means to pay, although they may take a contribution from you. Do you claim Attendance Allowance? If so they would expect you to use this to fund the one day at daycare. This is only my view based on mine and my Mum's experience - we reached the point last year where we couldn't meet Dad's needs without Mum being at serious risk of harm in terms of her own health and physical safety. It actually all got resolved when Dad went into hospital and after numerous weeks it was deemed that he needed Specialist dementia nursing care. I really feel for you Chrissy, having followed your posts it's obvious that things are escalating for you and, you know, you are not a machine. Hugs x NOTE I wrote this before I read that you had already spoken to your lady, my apologies!

 

[canary]

She phoned me today,I told her everything and she's coming for a home visit tommorrow to see how things are,I must have made an impression with what I told her!!!

Im glad you were able to tell her everything
I hope it leads to some respite soon
xx

 

[Violet Jane]

Make sure that you ask for some CONCRETE ACTION to be taken. Do not let her leave without giving you a DEFINITE PLAN. SYMPATHY IS NOT ENOUGH. And if your husband is on good form tell her this. It's possible that he won't be so agitated if he's distracted by her.

Write down a list of your husband's most extreme behaviours and impress on her that these happen EVERY DAY.

You may need to tell her that you will have to leave the house for a few days break if your husband doesn't go into respite. Impress on her that he can't be left on his own.

Good luck.

 

[DawnR]

I hope you get the respite you clearly desperately need. You can’t be expected to continue like this.
I had to threaten to go to my mum’s and leave my husband alone to get my care manager to take action.
And I was so desperate I meant it.
We shouldn’t have to fight so hard for any help, it’s a disgrace.

 

[scotlass]

Chrissy, this has brought tears to my eyes, My husband has alzheimers, but is nowhere as bad as this, the fact that we don't get carers allowance because we get the state pension is something I'll never understand....I know I was told it's because it's a benefit and we don't get 2 benefits....but if we don't have family to help at times where would we be....working and caring from morning till night ...and at times through the night...Carers in a care home only work certain hours and get paid for doing so.. as we get older everything gets harder to do, and lack of sleep can make looking after someone with dementia extra hard...

 

[JaxG]

@sunshine chrissy you just can't go on like this. You do need to contact SS and your doctor and tell them you have reached Carer breakdown, which you have, and that if you don't get help you will leave , which I think you must be prepared to do. I have been there earlier this year, OH is on Risperidone and is much calmer and I get 8 weeks of respite a year. I still hate my life, want this all to be over, I wake every morning with a heavy weight hanging over me, but things are better than they were.
Financially I am in a similar situation to you. I will only have a state pension, I work part time from home and will carry this on for as long as possible and I am terrified of the future. What I do know is that they will only take your husband's income towards care home fees. Do you have your pension going into a separate account. I was advised to do this and only my husband's pension, carers allowance and Attendance Allowance are taken into account when assessing costs. We pay £131 per week for Respite which is covered by Attendance Allowance. We were offered Carers to come in but it was going to cost £110 per week which I can't afford at this time. It just seems so unfair that, if this was any other disease, it would probably be taken care of under the NHS.

 

[sunshine chrissy]

Make sure that you ask for some CONCRETE ACTION to be taken. Do not let her leave without giving you a DEFINITE PLAN. SYMPATHY IS NOT ENOUGH. And if your husband is on good form tell her this. It's possible that he won't be so agitated if he's distracted by her.

Write down a list of your husband's most extreme behaviours and impress on her that these happen EVERY DAY.

You may need to tell her that you will have to leave the house for a few days break if your husband doesn't go into respite. Impress on her that he can't be left on his own.

Good luck.

Well we had the visit today from Lucy,she was brilliant,I was having a good day for a change cos he slept through for 6 hours last night so I didn't break down like I did last time she came.Even so she actually said you cannot do this on your own anymore.I can't actually arrange anything till I've had the financial assessment,we've been waiting since June despite numerous phonecalls.She's going to phone them and insist it's urgent,he needs to go to daycare 5 days a week.I can't afford more than one day until the assessments done,what happens if they say I have to pay more than I can afford?Thats it,I'll have to carry on coping till I end up in hospital! We rent our house and have no savings.She also said she'd have a word with the consultant about the meds which are doing nothing at all.True to her word she rang me tonight to say a new prescription will be ready to pick up tommorow,at least someone's looking out for me!

 

[This is it]

Had the worst weekend so far,he found the stash of lager I hide in the shed,well hidden too,he's obsessed with it,I allow him 2 cans a night,he really shouldn't be drinking at all with the meds he's on but what the hell,he's not got much else right now🥲I was upstairs cleaning,came downstairs to find him in the garden surrounded by cans,I lost it,what's the point of looking after him and keeping him safe if he's constantly searching for beer,he's been looking in neighbour's bins now for a few weeks,drinking the dregs from empty cans,he was never a big drinker,lots of other stuff I've coped with this last week,I'm on my knees right now crying myself to sleep every night,I hate my life.I'm waiting for a call from a brilliant nurse to ring me,she works at the psychiatric hospital,she rings every 2 weeks to see how things are,I've written every single thing down to tell her.Added to that,he's not sleeping more than 4 hours a night,I'm a carer doing 18 hour shifts on my own😭

Agree on all the above. Soo sorry. Yes mine now wakes it etc at night
I only cat nap
Lol I agree. I have 16-17 hours a day and what gets me is: someone will say to him. Hey R how r u doing. His reply
Great!
We look like the idiots too
As he usually turns around after ‘they leave and ask who was that
I’m kind getting scared. He gets dizzy
Stubborn on drinking fluids etc
To help

 

[Desperatejan23]

Yes I can ring the hospital and ask for to call me,she's due to call tommorrow anyway.What's worrying me is he goes to daycare one day a week,been going for 8 weeks now,he loves it thank god😊We've not had a bill for it yet,it's £75 for the day,still waiting for a financial assessment,we've got no savings,they got wiped out when he lost his job 3 years ago,we lived on£77 a week jobseeker's allowance and my state pension(he's 62,I'm 70)It's keeping me awake at night about how we pay for care when the time comes.I'm on the verge of tears every single day lately.

Hi Sunshine Chrissy, As regards your finances, I advise you to ring the Citizens advice bureau. They helped me a lot when my husband had to finish work due to his dementia. They worked out everything I could claim and helped me fill in the forms I don't know how I would have managed without their help. I was an emotional wreck at the time and they were very patient and understanding. I hope things improve for you soon. x

 

[sunshine chrissy]

My understanding is that if that is your only income and you have no savings, then care costs will be met by your local authority. If you own your home, this will be disregarded for the financial assessment, ie. will not be counted as an asset, whilst you yourself are still living there. You need to tell the psych lady that you are AT carer breakdown and that you urgently need residential respite because you cannot manage his needs f0r 18-24 hours a day, 7 days a week and you feel you are both at risk because of your exhaustion and his challenging behaviours. PLEASE do this, you really must get yourself a break and some thinking space. Tell her anything you need to tell her to impress how urgent this is for you. Daycare should also be covered by social care if you don't have the means to pay, although they may take a contribution from you. Do you claim Attendance Allowance? If so they would expect you to use this to fund the one day at daycare. This is only my view based on mine and my Mum's experience - we reached the point last year where we couldn't meet Dad's needs without Mum being at serious risk of harm in terms of her own health and physical safety. It actually all got resolved when Dad went into hospital and after numerous weeks it was deemed that he needed Specialist dementia nursing care. I really feel for you Chrissy, having followed your posts it's obvious that things are escalating for you and, you know, you are not a machine. Hugs x NOTE I wrote this before I read that you had already spoken to your lady, my apologies!

👍

I hope you get the respite you clearly desperately need. You can’t be expected to continue like this.
I had to threaten to go to my mum’s and leave my husband alone to get my care manager to take action.
And I was so desperate I meant it.
We shouldn’t have to fight so hard for any help, it’s a disgrace.

👍

 

[sunshine chrissy]

Well I finally got a date for the financial assessment,11th Sept,had the visit from the lovely Lucy from the Llams hospital,she urged me to tell social services I'm at breaking point,she's also been telling them it's urgent,I rang today and got the usual"so sorry about this but there's a backlog" I piled it on,told them I couldn't cope anymore and suddenly they had a space in the diary😂Lucy also spoke to his consultant about the olanzapine not working,he's on risperidone as soon as I can pick the prescription up so a good day today👍We'll see!!!

 

[sunshine chrissy]

Chrissy, this has brought tears to my eyes, My husband has alzheimers, but is nowhere as bad as this, the fact that we don't get carers allowance because we get the state pension is something I'll never understand....I know I was told it's because it's a benefit and we don't get 2 benefits....but if we don't have family to help at times where would we be....working and caring from morning till night ...and at times through the night...Carers in a care home only work certain hours and get paid for doing so.. as we get older everything gets harder to do, and lack of sleep can make looking after someone with dementia extra hard...

❤️