Hello to all

[Shaun_1611]

Hello, after convincing myself that i wasn't alone. I decided to join the community for a range of reasons one being my own sanity, I have been a sole carer for over 15 years of my aunt who was born with spina bifida, As the years have passed by i have always been the rock that makes sure her needs were met. When she was diagnosed with renal failure my world collapsed for a period but still continued as it was like second nature to me, dealing with extra complications that arose throughout her life. A few years ago her renal failure became really serious and she needed to start hemodialysis, now she has C.K.D Stage 5 and needs to do hemodialysis.
I do get extra help from additional carers that come in to handle the more personal care that she needs but everything else is up to me to handle.

In the process of looking after my aunt my grandmothers arthritis has gotten worse and now need someone to be on hand for her incase of trips or falls. Thankfully they both moved in together and makes my life a little easier. I am currently thinking of applying to become a carer to my grandmother too officially but not sure if the extra money would be worth claiming or better to say as i currently am.

After a while my aunt took the option to dialyze at home, we spoke about the commitment side of what she was asking and i agreed, pleased to say i'm fully trained now to deal with her hemodialysis for her and has added to her quality of life with a little more freedom. Sadly as being her main carer what little time i did have free vanished and now if i'm lucky to grab minutes between usual day to day tasks of normal life. Carers call's and other demands that most of us will know happen during a well structured day. I will hop online to see whats happening in the world outside.

Thank you for taking the time for read.
Shaun

[susieq]

Hello Shaun and welcome to the forum

Sounds as though you certainly have your hands full !

I am currently thinking of applying to become a carer to my grandmother too officially but not sure if the extra money would be worth claiming or better to say as i currently am.

you don't say if you are already claiming Carers Allowance for your Aunt ? So I feel I should point out that you can only claim the allowance once, no matter how many people you are caring for However, if you haven't already done so, it's probably worthwhile claiming Attendance Allowance for your Grandmother (and your Aunt too if she is over age 65.)

If neither lady is in receipt of AA I recommend you check out these links - the first is the .GOV website and the 2nd is Carers UK's factsheet on the subject

https://www.gov.uk/attendance-allowance/overview
http://www.carersuk.org/help-and-advice ... -allowance

If you have any other benefit queries then the best people to contact are the Carers UK Adviceline team

Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

0808 808 7777
advice@carersuk.org
Open Monday to Friday, 10am to 4pm

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 9am to 7pm.

If you can’t get through on the phones (lines are often oversubscribed) then send them an email, they’ll usually get back to you within 3-5 working days.

[bowlingbun]

Hi Shaun, welcome to tbe forum. I've been a multiple carer and it's tough. My advice would to stop trying to be Superma and start yelling Help! Ask Social Services to update their Needs Assessments and your Carers Assessment. This should especially look at your lack of "me" time.
Also Google NHS Continuing Healthcare Checklist Assesment. If aunt might appear to meet the criteria, ask the GP to arranege an assessment. It's something of a postcode lottery I'm afraid. Have both carees signed Power of Attorney forms? Made a will? Don't leave it too late. Where will you live when they die? Some carers have ended up homeless because they haven't made proper arrangements.
Finally, are they paying you for the care you give?

[Shaun_1611]

Hello Shaun and welcome to the forum

Sounds as though you certainly have your hands full !

I am currently thinking of applying to become a carer to my grandmother too officially but not sure if the extra money would be worth claiming or better to say as i currently am.

you don't say if you are already claiming Carers Allowance for your Aunt ? So I feel I should point out that you can only claim the allowance once, no matter how many people you are caring for
However, if you haven't already done so, it's probably worthwhile claiming Attendance Allowance for your Grandmother (and your Aunt too if she is over age 65.)

Thank you susieq for the welcome and advice. Sorry, At the moment I already claim carers allowance and income support for myself. My aunt is 50 and get's all the benefits she can claim already, As for my grandmother, Shes 76 now and gets her regular pension and disability currently as far as i'm aware. ( Will have to get those checked up to make sure she is claiming everything she needs )

[Shaun_1611]

Hi Shaun, welcome to tbe forum. I've been a multiple carer and it's tough. My advice would to stop trying to be Superma and start yelling Help! Ask Social Services to update their Needs Assessments and your Carers Assessment. This should especially look at your lack of "me" time.
Also Google NHS Continuing Healthcare Checklist Assesment. If aunt might appear to meet the criteria, ask the GP to arranege an assessment. It's something of a postcode lottery I'm afraid. Have both carees signed Power of Attorney forms? Made a will? Don't leave it too late. Where will you live when they die? Some carers have ended up homeless because they haven't made proper arrangements.
Finally, are they paying you for the care you give?

Thank you bowlingbun for the welcome. My aunts needs have been assessed this year by social services, though didn't realise that i was a full time live in carer who also handled night time problems and situations. I'm guessing they will have to do another because we have requested for the current property to be adapted to create a space for myself,( Currently living in a 2 bed bungalow, no 3 bed bungalows available in the area near where we currently live.) It was different before my aunt started to dialyze at home as my grandmother and aunt used to share a room. So much space is need though for all the extra equipment so i made the sacrifice to sleep in the livingroom till something could get sorted. ( meeting on monday to see if the plans will go though for adaptations ) As for outside help, i dont mind having the extra help. The current carers are friendly and deal with my aunt really well, yet their times are limited and only quick calls beside morning and bed. Family always offer help but they all have their own families and work commitments, so most of the time it always falls back on me. ( I'm sure most carers know how that goes )

As for property and things along those lines, I had a chat with the local housing services that own the property and they suggested a 3way transfer of the tenancy in my grans name, my aunts and my own. So if sadly the worse did happen, we could all stay where we currently live. My aunt is thinking of making a will and my grandmother is currently in denial regarding my aunt, It's her daughter and no mother will accept easily that she may pass before her. I'm actually getting a little me time next saturday for the first time this year. lol Gotta dialyze my aunt first then off out for the day till sunday morning and back to the usual routine.

[susieq]

Morning Shaun,

Well you seem to have got most angles covered

As for my grandmother, Shes 76 now and gets her regular pension and disability currently as far as i'm aware. ( Will have to get those checked up to make sure she is claiming everything she needs )

Please do check with the Adviceline team - they can do a benefits check for your Grandmother. I would recommend applying for Attendance Allowance for her - it's not means tested and it's discounted for income tax purposes. The money can be used for any purpose - buy in extra care assistants; gardener; taxi fares etc. (My Mum used to give me half of hers to pay towards running my car - which was used mainly for her benefit.) It is about the easiest benefit to apply for - just complete the form using a 'worst day' scenario.

Continuing Healthcare is not so much a postcode lottery, more a case of some ill trained DWP staff not applying the rules correctly resulting in applicants having to appeal the decision and re-apply ! But it's certainly worthwhile requesting the assessment.

[bowlingbun]

Continuing Healthcare assessors are NHS staff, not DWP. In some areas it is 800% easier to get than in my area of the New Forest where I live!

[susieq]

Continuing Healthcare assessors are NHS staff, not DWP. In some areas it is 800% easier to get than in my area of the New Forest where I live!

My apologies BB - I should, of course, have said NHS staff !
(Although Social Services are often involved in the assessment too.)
And, yes I agree it does seem to be granted easier in some parts of the country than others but it's not really a 'post code' lottery, as I said earlier it more a case of ill-trained staff not applying the rules correctly. We know this because of the number of cases where CHC has been refused but then granted when the decision has been overturned on appeal.

[Shaun_1611]

Thank you both for all the wonderful advice.

I will have a talk with both my grandmother and aunt over the next few days to make them aware of me seeking extra help/support from external sources. Mostly because they don't like to suddenly find out new people are suddenly going to start coming to ask them questions, my aunt especially has major issues talking to new people.
My grandmother often gets a little confused too when talking to strangers. ( thinking it could possibly the start of dementia or alzheimer's but could just be a sign of getting older.) I will have to look into that further next time she gets an appointment, plus they both don't like change and it scares them.

Probably next week i will start to contact the various services and see if i can arrange for new assessments for the both of them, do full benefits checks all round for each of us and contact the local housing team to sort out the tenancy so if the worse case does happen. We won't be having to chase things in a blind panic.

On a different train of thought, would you advise going for extra health and social care training ?
I can operate a hoist, sling and so on currently though not had formal training. Do you think that it would be beneficial to do a moving and handling course or dementia care for future prospects. I know a person that does that kind of training for the care company that takes care of my aunts personal care. She offered to give me the same training at a discount if i wanted to advance my skills further, for now and the future.

[susieq]

On a different train of thought, would you advise going for extra health and social care training ?
I can operate a hoist, sling and so on currently though not had formal training. Do you think that it would be beneficial to do a moving and handling course or dementia care for future prospects. I know a person that does that kind of training for the care company that takes care of my aunts personal care. She offered to give me the same training at a discount if i wanted to advance my skills further, for now and the future.

If you have the time to devote to it I'd say 'go for it' - if no other reason than it would give you confidence when assisting both Ladies. Plus, of course, it could stand you in good stead in the future should you decide (and be able) to return to the workplace