mums brother refusing to accept diagnosis

[Farmergirl]

Mum has alzheimers, possibly with VD also. She was diagnosed in jan & is now living with us.
Her GP & Consultant felt she was unable to live alone unsupported and the choice was here with us, or a care home.
She is 84 and has been barking for at least 2 years.....since Jan, when I was flying backwards & forwards fortnightly to see/take care of her we (my brother & I) felt that moving in with me would be the best option.
She has been with us for 4 months now, and her brother came to visit last week.
Since the visitors left she has been behaving badly - crying all the time, disruptive etc.

He has told her that she is just old and that he cant understand that she cant live in her own home (he hasnt said this to me, but has spoken to my brother since the visit and said that he felt mum was unhappy here and he saw nothing wrong with her except old age and a bad memory).

He refuses to listen to the fact that Alz is a diagnosis and that getting it is not a normal part of the aging process. She is also on anti-psychotic drugs to control the hallucinations, which were quite bad (and are reappearing).
She was refusing to take medication when she lived at home, refusing to eat( her fridge was full of rotten and out of date food), refusing to leave the house, making abusive phone calls in the night to neighbours and flooded the downstair flat (because the guy is a smoker). She has accused people of stealing (even relations) and can no longer cook for herself.

But he thinks she is fine.

The last couple of days have been very stressful and yesterday I visited a care home that does day care and respite - this is the direction we are4 heading for or else I will go mad.

How can I explain this to him - that she is ill and cannot possibly live in her own home? He just dosnt get it - and as such he is now telling other relations that Im forcing her to stay!

 

[Onlyme]

I think the best idea is to ask him to look after her while you go away for a weekend. As she is not ill then he shouldn't have a problem.

 

[Coletta]

I was just going to say the same, but I think a day will probably do it!

x

 

[Farmergirl]

His wife is quite ill and they live 300 miles away....
the thought had occured to me.....

last night I was so angry that I wanted to send an email, but this morning Ive just become resigned....Im still angry and will probably refuse to speak to him on the phone as he obviously thinks Im lying/forcing mum to stay here etc.

You know what its like sometimes, you start to tellpeople what its like, and then as you re-live it, you get uptight and tense, then upset - and thus look like an over emotional wreck.

 

[bulmer]

Maybe he has it

Hi I'm sure there are a lot of people out there with vas dem that are unaware they have it my mum for many years is one. Saying you cant cope is not a bad thing I say it all the time. The alz society is very helpful. Take care don't go mad.

 

[Jancis]

Oh dear, it does sounds as if your mum's brother has failed to understand why your mum is like she is? If he hasn't had to deal with someone with AZ/dementia before then perhaps he was shocked by what he saw when he visited. You did say in an earlier post that she has deteriorated very quickly and so if he hasn't seen her in a while he'll maybe blame her condition on her losing her independence. Especially if your mum has told him she wants to go back home, that she's unhappy etc etc. This is very common with sufferers - they make things up and can be very accusative of their carers. But you would think her brother would understand that you must have been unbelievably concerned about your mum to have her come to live with you? Can you talk to your other relations about your concerns for your mum and warn them of her brother's inability to accept her condition, before he starts stirring up trouble?

 

[Farmergirl]

Got it in one J - Im so concerned that 1. He beleived her! and 2. He will tell everyone that he thinks we are not acting in her best interests.
Apparently, she told him that i get paid £150 to look after her - total nonsense. We arnt eligible for carers allowance as we get occupational pensions - but he beleived her!

 

[amanda75]

it took my brother quite a while to come round to the fact that my dad had dementia, he would never talk about it, if he visited on a good day, my dad was fine, he very rarely saw my dad on a bad day, but in time he realised and now he takes my dad out and helps him, my brother told me that he was in denial and would block out the bad days,

i would ask him to look after your mom for a day as you need to do some things and have no one to look after her, if no joy then say you want to go away for a weekend,

he should then realise its not just old age and that your mom needs looking after

hope you manage to get him to understand

x

 

[Nebiroth]

Got it in one J - Im so concerned that 1. He beleived her! and 2. He will tell everyone that he thinks we are not acting in her best interests.
Apparently, she told him that i get paid £150 to look after her - total nonsense. We arnt eligible for carers allowance as we get occupational pensions - but he beleived her!

Occupational pensions shouldn't affect Carers Allowance.

The only means test that applies to CA is income from employment - this means pay for doing work, either for an employer or through self-employment.

As far as I'm aware an occupational pension doesn't count.

Who told you that you weren;t elligible? Did you apply and got refused?

It is true that people receiving state pension can't get CA because both are "earnings replacement" (£55.55 a week )

I assume that, as is common, you are receiving your occupational pensions at an age earlier than state retirement. Lots of schemes used to offer that, and you could get pensions even earlier than this if you had to retire due to ill health

 

[Scraggedbloke]

Hiya

Nebiroth, is RIGHT.

Occupational Pensions do not bar you from Carer's Allowance.

Many Health Care professionals advise incorrectly, because they get confused with State Retirement Pension.

I was told this by a DWP respresentative, that made a point of checking the rules himself.

I wish you well and good luck, keep posting.

 

[Farmergirl]

We havnt applied for CA.....

We were under the impression that we wernt eligible as we get occ pensions (mine is ill health). We are both self employed, (but this year made helluva losses due to the upheaval with mum) and get tax credits as we have 2 kids at home under 16.
Its a real struggle. My tax credit return/renewal this year showed that when taking into account income (from pensions) and balancing this against the losses we made we actually grossed between us £7500!
This has caused some sleepless nights I can tell you. Then we have mum tell her brother that we are getting £150 a week to look after her (total fabrication) and he beleives her!!!!

 

[Sam Iam]

FG, did you know you can have Attendance Allowance, which is not . Means tested ( does not take your own monies in to account) I work full time and get £180 per calendar month which is used for various things.

Brothers are difficult, I have a brother & an brother and on the whole the both of them are now " doing their own thing". brother took mum away ( we used AA money for this) and when he came back he said that they ( brother and sister in-law who works in a care home) would need to take their daughter with them next time as they could not cope with mum
I started using respite for mum after this as I felt that way mum would be more settled.
Do you know FG I have come to the conclusion that in the end you are better to do things that make your mum and you happy and let the rest of the family sink or swim on their own as you have more than enough on your plate. Xxxx

 

[Farmergirl]

Hi SamIam
Yes, completed the Attendance allowance and mum now gets the higher rate - this is paid into her account and we use it to pay for the PT carer that comes in.

 

[Farmergirl]

I also spoke to my cousin today (who also came to visit mum 2 weeks ago) - he is a retired orthopaedic consultant who understands both the problems that we are having (they had her overnight) and the problem with the uncle. He is going to speak to him.
Hopefully this will stop all the tales being spread.

We are quite a close knit family .......until it comes to care or money....what a surprise.

 

[workerbee]

Hi Farmergirl
I sympathise very much with what you are going through.

I posted my first thread last week about how appallingly my brother has treated us caring for my Dad. His motivation for his disgraceful behaviour is his potential inheritance. I think he would rather my dad had continued to have a nightmare time in his own house at potentially great danger as it would be cheaper!!

I am hugely puzzled as to your uncle's problem. Why would he want your mum to struggle on her own? And anyhow what business of his would it be if your mum was paying you something to take care of her? If she was in a nursing home it would be costing her a fortune if she was self funding, and as you are taking great care of her she must much prefer to be with her daughter and family. Caring is a massive task, however much you love the one you care for, and should not be dismissed by those who are not doing any caring as worthless and cost free. If there is one huge lesson that I am learning from our caring is that it is absolutely not acceptable for us to go broke caring for my dad, as if we go down the pan he will have no-one to help him and will end up in a nursing home which is his absolute nightmare.

Do you have an Admiral Nurse? I seem to be advocating their services to as many TP members as I can. Our Admiral Nurse has been a lifesaver. It is her role to support us as carers and she is an absolute mine of information and will advocate for you in all kinds of situations. If you get one they would soon put your uncle straight!!

Do take care.

best wishes workerbee xx

 

[Nebiroth]

We havnt applied for CA.....

We were under the impression that we wernt eligible as we get occ pensions (mine is ill health). We are both self employed, (but this year made helluva losses due to the upheaval with mum) and get tax credits as we have 2 kids at home under 16.
Its a real struggle. My tax credit return/renewal this year showed that when taking into account income (from pensions) and balancing this against the losses we made we actually grossed between us £7500!
This has caused some sleepless nights I can tell you. Then we have mum tell her brother that we are getting £150 a week to look after her (total fabrication) and he beleives her!!!!

Occupational pensions do not affect elligibility for Carer's Allowance. The only thing that matters is income from employment - either working for someone else or being self-employed.

Income from earnings is a maximum of £100 per week - above this and you can't get Carer's Allowance. Note that this is the income of the person claiming Carer Allowance. You can also take certain expenses off your income so in some circumstances your earnings can be higher. Joint income would, I believe, be divided equally.

You should claim Carer Allowance right away as your mum is already getting AA. You just need to be 'caring' (this includes almost everything, including simply being available) for at least 35/hours per week.

One caveat: ask for advice first. Some benefit awards affect others - possibly CA would reduce something else.

Your local authority should have a benefits officer, their job is to advise about all this, they often do home visits. If you can't do this call the Benefits Helpline.

Don''t bother to ask healthcare people about benefits, it's just not their area, often all they know is what they have gathered from what other patients have done and this is often inaccurate or misleading.

 

[Farmergirl]

Thank you!
We will try nowto claim, and I have a welfare officers phone number (from the council).
The manageress at the care home i visited this week also felt I should get in touch with the Dementia Liaison officer and gave me her number. She also gave me a great big hug (which made me well up), but at least I can see a light at the end of the tunnel.

We dont have Admiral Nurses here in Cornwall, but I will do a ring round and see what help I can find. That is this week's job!