Hi all, very glad to have found this forum. I am caring for my dad (86) who has Non-Fluent Primary Progressive Aphasia, and for my mum (85) who has Alzheimer’s. They are still living together independently. I try and go over most days, but they now need more care than I can give. My mum has been very resistant to having anyone come in so I’ve been treading carefully but it is getting urgent. I’ve got a few meets with agencies arranged. I would love to find someone privately - does anyone have suggestions of how to do that? My parents are in London - NW5.
It’s very difficult because my mum believes she is more able to support my dad than she is. She also gets extremely frustrated with him and he is often very upset.
I also have a 16 year old son at home who has ASD, ADHD, dysgraphia and anxiety. He has just been withdrawn from school because they said they couldn’t meet his needs. My daughter has Selective Mutism and high social anxiety. She is doing well at the moment and is going to school. We moved back from the USA where we had been for 10 years last September, so I’m trying to sort supports and find therapists for them too. We are going through CAMHS process and at start of EHCP process also.
I’m really asking for support with my parents here, any advice on finding carers, especially any recommendations for private carers if that’s allowed? or advice as to how to find them. I’ve got lots more questions and some heart spilling I’d love to do at some point, but I’ll leave it there for now. Thanks all for reading. And solidarity - it is amazing reading posts and seeing what people are doing and dealing with.
Hi @KitKat103 welcome to the fourm. you could email the carers helpline, explain the situation and they could help put you in touch with the right people. maybe you need to also speak to the alzheimer’s society as they might know more than the carers. I would ask their gp to help talk it over with your mum as it a delicate case. I would suggest social service to help but it hit or miss weather they are any use. take care
Welcome to the forum. At one time we were caring for all four of our elderly parents plus our brain damaged son. It was very tough.
I’ll start with some basic questions.
Do you have Power of Attorney for either of them?
Do they have over about £46,000 between them?
Are they very secretive about money?
Claiming Attendance Allowance?
Paying Council Tax?
Own their home?
There aren’t right or wrong answers, it just gives us more understanding of the general situation.
What would you say was most important to you, right now?
Did you know your son is entitled to education up to the age of 25, in various ways.
Welcome @KitKat103 You are right - this place is VERY supportive and non-judgemental as well. It’s a safe place where you can open up and, when necessary, have a rant! Loads of us have different experiences and while I can’t directly help with your questions, you are already finding others are happy to offer supportive advice.
Warmest hugs and best wishes to your whole family.
@KitKat103
I suggest calling Admiral nurses What is an Admiral Nurse and how can they help? - Dementia UK
they’re specialists in alzeheimers and may know of private carers
They are more sensitive to the difficulties of onboarding someone into the home
Otherwise I know there are MANY care agencies in London, the issues as you’ve mentioned are about your Mother’s acceptance/delusions of what she can/can’t do and their needs.
At some point, whether she ‘likes it or not’ her needs and those of your father will exceed her reluctance. If she’s VERY against it, the Admiral nurses or other dementia support-counselling/care charity could help facilitate a discussion to a small step…
we started by having ‘a couple of hours cleaning’ to ease carers into our house…baby steps?!?
Thanks so much for your replies. @Michael_1910123 their GP is very helpful, and has helped talk to my mum. The folks at RDS (rare dementia society) are also great. I will contact the helpline and Alzheimer’s society - thank you for those suggestions.
@bowlingbun my goodness, and thank you for the questions and support. In answer to your questions:
Yes I have power of attorney for both and for both finance and health,
Yes they have over £46,000 - they are self financing for care
My mum is secretive about money, my dad not, and my mum is beginning to be more comfortable with me helping her with banking - she is unable to do it herself.
I am trying to get attendance allowance forms completed and submitted. My mum was against that but it is clearly in her best interest so I am now doing it without consulting her,
(For background both my parents were social workers, and my mum is struggling with being on the receiving end of care she used to provide)
They do pay council tax, I’m aware that’s something I need to sort out
They do own their own home
What’s most important to me right now: making sure my dad is safe and cared for when I can’t be there
Re my son, I am aware this would be true if we get EHCP (which I am at beginning of applying for) - is it possible through other routes?
@Chris_22081 thank you 
My son is now 46, in his day there were no EHCP arrangements. However another forum member, Melly, will be able to point you in the right direction. As soon as they receive Attendance Allowance you should be able to claim Council Tax Exemption.
All care agencies providing personal care are required to register with the Care Quality Commission. If you go to their website you should be able to search for providers in your area.