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New Carer - No Information - Carers UK Forum

New Carer - No Information

Share information, support and advice on all aspects of caring.
For 15 months I have become sole carer to my 93 year old Mum, who could no longer cope alone in her Council sheltered housing flat and so moved in with me and my husband. I obviously notified our local council and her Doctor of her change of address and why she had to come to live with me and that I would be her carer. Mum has dementia, mobility issues and she is also deaf. Prior to this I have had no experience in looking after an elderly person so I had no clue as to who to contact for help. How did other carers find out about what was on offer to help both the carer and caree? I think that as soon as any Gov body is notified that a person is carer to someone, advice should be given immediately. The only help I have received followed a visit to the doctors when I asked for Mum to be referred to our local clinic to have her toenails cut, as I have a phobia about touching someone elses feet! Whilst there the podiatrist was asking me about Mum's care and what help I got and I said none, followed up by 'If a relative is happy to take on the job then the powers that be will let you and they can take a back seat.' I told her that I honestly thought that someone would be calling at our home to ensure that Mum was ok and that I was doing everything to the best of my ability, but she said that just doesn't happen. Anyway she must have taken pity on me because she arranged for OT to visit. They got me a small walking frame (already got 2 for her) a cushion, and a commode, which I have since replaced. 6 months down the line I phoned OT to see if they could provide me with a bed alarm as Mum had started to try and get herself out of bed at all hours thinking it time to get up. They told me that as I hadn't needed their help withing 6 months Mum had been removed from their register so I would have to go to the GP to be referred again!! I have found out more on this Forum than I ever have from the so called experts. I am now awaiting assessments to take place. The lady that I spoke to at the Council Adult Care dept kept asking me what I wanted and I had to say I don't know because I have never been a carer before. I just seem to be going round in circles.
Firstly, you want an assessment so someone can tell you what you are entitled to. You need to know what help and support is available to mum in the community, as it's impossible to care 24/7 without a break. Unless you get more help you might need SSD to arrange residential care. This will make them realise it will be cheaper to fund what you need than to fund residential care! You need a named Carers Support worker. Contact with a Carers Support Group. Are you getting any help from a Community Psychiatric Nurse? Has mum had a formal diagnosis? Are you claiming Attendance Allowance for her?
This has been the same for my partner - he has been caring for his mum for over 10yrs. They had the same GP where they used to live, and they have the same GP now. Even after he went to the latest GP and had to go on medication for anxiety, nobody has offered him a carer's assessment or anything else. Nobody has ever even asked him if he is happy to continue caring. Neither GP has ever raised concern for his welfare.

In contrast, my dad started showing signs of dementia last December. When he had his memory/mental health assessment in April the doctor passed my details over to the local authority and they came out to see me for a carer's assessment a couple of weeks later.
This seems to be a very common theme among caring for the elderly, you take on more and more as dutiful son or daughter and then often years late you wonder if you have become a carer without noticing it. I think I found out most of the information following hospital discharges but wouldn't it be great if everyone had access to all this info and this web site from day 1 or at least knew it was available. So often it isn't until a crisis that information is exchanged.
Sadly, many professionals in health and social care tend to be like my friendly local mechanic - if I'm not standing outside hammering on his door before he's even had chance to get a brew on in the morning, he assumes my car is fine and I don't need him.
This is what we've found with many other services - if they don't hear from us, they assume we're doing fine just as we are and so they leave us to it. Even the GP, who obviously knows MIL's issues are chronic and gradually worsening needs to be reminded every so often that we're there and we do still need help, but we still have to do the leg work. I guess that's just the reality of modern medicine and care.
bowlingbun wrote:Firstly, you want an assessment so someone can tell you what you are entitled to. You need to know what help and support is available to mum in the community, as it's impossible to care 24/7 without a break. Unless you get more help you might need SSD to arrange residential care. This will make them realise it will be cheaper to fund what you need than to fund residential care! You need a named Carers Support worker. Contact with a Carers Support Group. Are you getting any help from a Community Psychiatric Nurse? Has mum had a formal diagnosis? Are you claiming Attendance Allowance for her?
Thanks for your response. 12 months ago Mum had a memory test done at our local Surgery, the results from this were that there was significant problems with her ability to remember, this we knew to be obvious from our observations of her whilst she has lived with us and it is so much worse now. Her GP told me that Mum could be referred to a Consultant to have a full diagnosis, but she is not aware that she has a problem and at 93 years of age I do not want to stress her by taking her to a hospital, something she absolutely hates. We get no help whatsoever, either physically or monetary. I applied on line for Carers Allowance and as soon as I stated that I get State Pension, I was told I couldn't get any extra.
Hi
That is so unfair in our current system . It may still be worth pursuing a Carers Assessment because even if mum is self funding and you are retired and consequently excluded from CA, you may get some respite help awarded from a care agency for you personally rather than for mum which may be fully funded. My father is self funding and I work part time in addition to CA but have still been entitled to 30 hours a quarter of respite time. I use this as 2 hours a week for help with domestic chores- cleaning, ironing etc.
Hi,

I absolutely agree with what the others have said - it's so important that you get a Carer's Assessment to find out what you are entitled to. Your local authority is obliged to provide you with an assessment if you request one and the help you get may take a little bit of pressure off. I know how frustrating this can be but you're doing such an incredible thing caring for you mum and you deserve all the help you can get. From personal experience all I can say is to be persistent. I know that it can be hard at times, and caring for a parent can be exhausting and at times thankless, but both of you deserve all the help you're entitled to. When my family were caring from my Grandmother I found the money advice service care guide really helpful, I didn't even know what a carer's assessment was before I google for help! It gave some useful tips now where to find help and what we might be entitled to. Just don't be afraid to ask - like I said, you deserve all the help you can get.

Keep up the amazing work, we're all here to support you!

Edited to remove advertising in the signature.
Cynically, I'm not in the least surprised no one tells you what you can claim etc etc, as this will cost them money.....

There's also, of course, the 'brainwash' that (a) 'of course' we will look after our own old folk and (b) we 'have to' anyway (which of course we don't.)

I didn't know about anything at all such as Needs Assessments, Carers Allowance, reduction in Council Tax because of mental infirmity, etc etc, until I found this forum.
I'm glad to hear that the forum's helping you. It's a real minefield out there and trying to find anything out when you have no clue where to start is hard. Especially when councils seem so unwilling to let us know everything. Definitely check out the GOV.UK pages out there though.

I hope you get the help you need. Don't be afraid to ask any questions about this stuff though. It's surprising what help you can get if you ask the right questions or the right person. It's just a pity it isn't more transparent.