Newbie but need some advice

[2young4dementia]

Hi all
My mum is 60 in August. She was diagnosed in 2013. (July 10th)
She is deteriorating and its hard!
I work full time, as does her husband.
I have a 14 yr old son who doesn't understand.
We are all finding it hard to communicate with each other let alone try to understand mums illness.
I suggested counsilling, but is there anywhere that offers training for families not just work carers?
Also, i know theres gonna come a time i/we will have to give up work to help my mum and her husband. But do we get help with that if we stop work?
Im struggling so much! Tonight mum hammered on my front door (we live round the corner from each other ) accusing me of stealing her trainer for an art project. When i suggested that one of her dogs had taken it she flipped out at me! Should i of suggested i look for it anyway?
Said trainer was in her cuboard.
Shes also accusing her husband of having an affair! Poor man. He's scared for her as we all are and struggling.
Any advice greatly appreciated xxx


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[Pickles53]

Hi and welcome to Talking Point. Your username says it all, it seems far too young but sadly there are many families on TP facing this same trauma. There is help out there though it can be hard to track down.

If you are in the UK there is some ££ help available. Your mum would be able to apply for Attendance Allowance and that would be a qualifying benefit to get a reduction on council tax. There is also a carer's allowance which you get if you are caring for 35+ hours per week and don't earn more than about £100 (not sure of exact amount) but it is not a lot. It may be a while ahead but I would think very hard indeed before contemplating giving up your own jobs. Otherwise you risk wrecking your futures and your mum would surely not want that.

 

[jenniferpa]

Hi and welcome to Talking Point.

I have to say, I do not agree that there will come a time when you will have to give up work to care for your mother, no matter how much you feel you should do so. Is your father very much older than your mother?

I would concentrate on ensuring that your father has as much support that you can obtain so that he can continue to care for her as long as he is able, and then help him source a care home when he can not. I understand that this is a difficult decision to make, and it's not one you need to make now. In fact, it's probably unwise to try to plan or think ahead too much when it comes to dementia: this wretched disease can be impossible to plan for, although I understand the desire to do so.

 

[2young4dementia]

Thank you for your replies. I am in the UK.
My mums husband is 20 years younger than her. They have been married for 11 years this October.
He has to work to keep the house. mum has a carer that goes to see her twice a week. And she is with a group that has monthly outings. Although they cost a fortune and all they say is'thats what you get your benefits for' they dont seen to understand that mum needs her benefits to help pay for the house hold bills etc. They're not eligible for other benefits as her husband earns too much for them to claim but not enough to live off on just his earnings(i don't know much about their finances to be honest)
Its not a case of giving up work, it's because i want to so i can be with her an spend as much time as i can as i feel im not spending as much time as i should be as im working full time and that makes me feel guilty. Especially that she cant even use her hands properly (but she can just about use a knife and fork still)
I even feel guilty not being able to be at home for my son on the school holidays! But i know i have to work to live.
She says she doesn't want to go to a home when she needs to, shed rather someone shoot her( her words not mine) But this could be years down the line or it could be next month. Who knows
What this has in store for us.
When i was a child i was petrified of my mum. My mum and dad use to argue all the time and my mum was always so angry lol
When they divorced she was a complete different person. She had confidence id never seen before. She was the strong head of the family. Always happy. Now ITS taken all that from her. She seems so child like frightened and lost.
And all i wanna do is be there for her!
ITS SO BLOODY HARD!!!! and now another sleepless night worrying.
We do laugh about it though. She says if i cant laugh about it it will kill me quicker.
I hate it that she gets so frustrated when she cant put her coat on or do things that she knows she cant do anymore. Breaks my heart.


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[jaymor]

Hi and welcome to TP.

I can fully understand you wanting to help your Mum and Step Father. It is a dreadful disease that has an effect on all the family.

From the money side, attendance allowance will only be available to your Mother when she reaches the age of 65, so not available right now. Carers allowance is £61 per week and only available if you care for 35 or more hours a week. You can earn but only approx. £100 per week.

You say you need to work to live, could you manage with an income of £161 per week?

You have a son who is 14, an age when children need your undivided attention, there is so much going on in their lives including school becoming very important as they head towards the dreaded GCSEs. You say he is not understanding his Grandmother's illness now, as it gets worse he will understand less and if you are tied up with caring for your Mum and have little time for him you will have another care problem to contend with. I cared for my husband for 7 years and know how all consuming it can become and how little time I had for our children and grandchildren. My husband was diagnosed at 62.

Has your Mother had an assessment done through Social services? If not ask for one and this will show what needs she has and what help is available for her. From this your Step Father can also have an assessment as a carer and help can be offered to help him in his caring role. You can help with your Mums care but please think hard about wanting to give up work to care. Caring is stressful and shortage of money will make it even more stressful. In all this you and your own family have to have a life, it is so easy to be bogged down with caring that you don't see a crisis coming or the effects it is having on other members of the family.

Your Mum is lucky that you care and want to help but please think carefully.

Good luck with what ever dicission you come to.

 

[2young4dementia]

Hi thank you x
Im pretty certain SS are involved but not 100% sure who is and whose not!

I will look into more.

And yes i could live off 161£ a week with my partners income. But my step father would need to apply to be her full time carer. So he would by right receive the allowance.

My son is amazing with mum.

My step father is just struggling with to be honest and i think we all are seeing her change so rapidly.

Ill do some more research

Thanks



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