I am worried about my Dad - main carer for Mum with Lewy Body Dementia

[Olim]

Hello, I have just joined this forum,
My Mother has LBD and Parkinsons, heart problems, myalgia, and for the last 10 days has been suffering from extreme threatening hallucinations 24/7.
My father is not getting any sleep and mum is up and down, in and out of bed, scared stiff that someone is going to shoot her , has called the police and more.
I have my mum to stay once a month for 2 nights to help my dad , which I will try and increase, but is difficult in her current state she needs 24 hour care ( she is following you around the house as she is scared) and I have a job and 3 children and live a 2 hour drive away .
I want him to get help from LA, but they want to ask q's about his finances and he refuses to do this. This is going to make him sick too- he is under a lot of stress, and he is worried that the LA will take sell their house from under their nose.
I really need to get an understanding of how this financially works as they need help like a day centre or a carer daily.
Are their savings looked at individually or jointly ?
Is there anyone "independent" I can go to to ask questions about this please ?
Many thanks

 

[chris53]

Good Morning Olim,welcome to Talking Point, much support and understanding here, I don't have experience of this situation,but am sure others will be along with words of wisdom.
Take care
Chris

 

[Grannie G]

Hello Olim

I`m pleased you`ve joined this Forum and am sure you will get good advice.

The financial situation may have changed since my day but as far as I know your parents` savings are looked at jointly. What I`m not sure about is whether the ceiling allowance before being eligible for Local Authority help is joint or individual. I know there are many people on this forum who have more experience in this field and they will soon be able to help you.

What I do know is your parents house cannot be taken to fund your mothers care while your father lives in it. No one can put him out of his home.

You can phone the National Dementia Helpline for current financial information.

http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

 

[Pinkys]

I would have thought the helpline could give you the info you need. Or indeed, Social Services will explain it all when you contact them.Which I think you should immediately. You can tell your father you are going to them for advice, which actually will be true.


My (limited) understanding is that 'they' cannot and will not sell the house from under your poor father, but there may be a charge against the property when it is sold, if your mother has to go into residential care. There are charges for daily help etc, but they are based on ability to pay etc. Does he get Attendance allowance? He needs it. And you need to have a lot of information about this, to help soothe his anxieties.

 

[tigerlady]

Hello, I have just joined this forum,
My Mother has LBD and Parkinsons, heart problems, myalgia, and for the last 10 days has been suffering from extreme threatening hallucinations 24/7.
My father is not getting any sleep and mum is up and down, in and out of bed, scared stiff that someone is going to shoot her , has called the police and more.
I have my mum to stay once a month for 2 nights to help my dad , which I will try and increase, but is difficult in her current state she needs 24 hour care ( she is following you around the house as she is scared) and I have a job and 3 children and live a 2 hour drive away .
I want him to get help from LA, but they want to ask q's about his finances and he refuses to do this. This is going to make him sick too- he is under a lot of stress, and he is worried that the LA will take sell their house from under their nose.
I really need to get an understanding of how this financially works as they need help like a day centre or a carer daily.
Are their savings looked at individually or jointly ?
Is there anyone "independent" I can go to to ask questions about this please ?
Many thanks

First of all, please tell your father that there is no need to worry about the house being sold, even if your mum has to go into residential care. As long as your father is living in the house, it is disregarded.

Here are fact sheets about it

http://www.ageuk.org.uk/Documents/E..._permanent_residential_care_fcs.pdf?dtrk=true

http://www.ageuk.org.uk/Documents/E..._home_if_you_have_a_partner_fcs.pdf?dtrk=true

As regards having an LA assessment, they only should want to know about your mothers savings and half of any joint accounts. Depending on how much she has, she may have to pay part of the cost of carers coming in.

Here are fact sheets about that

http://www.ageuk.org.uk/Documents/E...igibility_and_care_planning_fcs.pdf?dtrk=true

http://www.ageuk.org.uk/Documents/E...or_care_and_support_at_home_fcs.pdf?dtrk=true

The Alzheiemers Society also do fact sheets on these and lots of other topics. I hope your mum is on the high rate of AA as that can help pay for care.

You should also get POA in place for managing her future health and financial needs

 

[Bill Owen]

Wife had l/w/b

hello, i have just joined this forum,
my mother has lbd and parkinsons, heart problems, myalgia, and for the last 10 days has been suffering from extreme threatening hallucinations 24/7.
My father is not getting any sleep and mum is up and down, in and out of bed, scared stiff that someone is going to shoot her , has called the police and more.
I have my mum to stay once a month for 2 nights to help my dad , which i will try and increase, but is difficult in her current state she needs 24 hour care ( she is following you around the house as she is scared) and i have a job and 3 children and live a 2 hour drive away .
I want him to get help from la, but they want to ask q's about his finances and he refuses to do this. This is going to make him sick too- he is under a lot of stress, and he is worried that the la will take sell their house from under their nose.
I really need to get an understanding of how this financially works as they need help like a day centre or a carer daily.
Are their savings looked at individually or jointly ?
Is there anyone "independent" i can go to to ask questions about this please ?
Many thanks

hi im bill bare with me .im dislix.my wife delyth has just pass away in march this year from l/b/d .so i know a littel bit about this .you will need a socle worker to help you frist of all. Then you can apply for pip .this is an income to help you with .about £554 a month.they can not take you( house off you) has you dad live there has well so you can be foce to sale the hous. This is going to be very had for you dad has it was for me.tell him to keep strong . Ther should also be care for you mam day center to go to . Fro you dad to get some time to him self. Has this will be very very hard over time.also you dad can apply for care alowence has he is looking after you mam . I know i have had all of this givin to me there will not tell you you have to ask .dont be afrad.to ask .

 

[Dave66]

Hi Olim

Welcome to TP, I feel for you and your parents.

I don't have much experience with the issues/concerns you raised, sorry.

I do know that you can get a Carers Assessment for your Dad and you should do this ASAP. My Dad put it off for a very long time, once he had one, we became aware of a Sitter Service that he could have to give him a break. This is free for X hours, if he wanted more, then there would be a payment, this wasn't discussed, so I cannot offer any help with that.

If you don't have a Social Worker involved with your parents, get one ASAP, they should be able to offer advice and help about different support groups and things like Adult Social Care, Occupational Therapy assistance, Admiral Nurse in your area etc.

If you haven't already applied for Attendance Allowance for your Mum, apply for it ASAP, you could use that money to pay for additional Carer time.
If you don't have LPOA for your Mum, get both ASAP.

I'm sorry if I'm repeating any advice already given.
If you can say which part of the country your parents live, there may be someone on here with experience of the "system" in that area.

Olim, you have come to the right place to help you and your family through the difficult times. Good luck to you all.

Dave66

 

[Olim]

thank you

Thank you for all your helpful suggestions,
some new ideas and I have been busy trying o sort out some help for my Dad and Mum

 

[theunknown]

Has your mum been checked for a possible urine/kidney infection? As it seems these can cause pretty nasty hallucinations for some. My mum started having frightening hallucinations. Her doctor suspected she had temporal arteritis; a condition that can lead to sudden blindness. Because of this the patient is put on a high dose of steriods to prevent blindness and gradually the dose is reduced. However, there is a thing called steriod psychosis, which causes horrible hallucinations. Once the the steriod dose is reduced to an optimum for the patient they would be expected to go back to how they were before the problem. If this doesn't happen it's usually because of an underlying undiagnosed condition, which was the case for my mum.