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Hi! New guy here, getting to grips with serious reality... - Carers UK Forum

Hi! New guy here, getting to grips with serious reality...

Tell us a bit about yourself here.
Hello everyone. Looks like you have a great forum here!

My mum (79) suddenly suffered a severe stroke. As a result, she is badly disabled, on a 'PEG' feed because she can’t swallow, and finds it very difficult to talk (dysphasia). She was in a stroke unit for many weeks; they did the very best they could and now my mum is back home and getting help from care workers, a neighbour and myself. Unfortunately, the story doesn't stop there…

A very close cousin (55) is severely disabled through MS and Parkinsons and is looked after by his wife, with some outside help. His wife very nearly sustained serious damage to her back and was experiencing exhaustion before being able to obtain regular help to get him up and put him to bed.

My cousin’s wife and I continue to go through huge emotional, physical and learning challenges as we strive to achieve the best care and quality of life possible, within available resources, for my cousin and mum. I can see that many people on the forum are in similar situations.

Understanding how best to interface with the NHS (E.g. Hospital staff, GPs, District Nurses), Social Services, other parties (e.g. care companies) and their ‘systems’, whilst keeping cool, it would seem, is one of the biggest challenges faced by those new to caring and as we strive to deliver the best results for those we care for. At that point, I’d like to raise a couple of questions (any responses would be much appreciated).

Does any one know of any ways, or information, to make it easier to handle the transition into caring and to manage the ongoing process?

Is it normal to have to ‘shout’ quite loud (or in my cousin’s wife case – virtually injure herself) before people start to do something? (I do appreciate that the people working in the NHS and Social Services are frequently stretched).

To end on a positive note: despite all that they’ve been through, my mum and cousin still have a sense of humour. I am so grateful for that!
hello and welcome Image and yes, it is necessary to make a lot of noise before you get somewhere, unfortunately. Image
Hi and welcome! I am a full time carer for my mum who lives with me. She has had a stroke and also has severe dementia. She is very disabled and we use a hospital bed and hoist to move her and have 2 carers in 4 times a day.

Hope you dont mind me asking but does your mum have to pay for her care? I managed to get Continuing Care Funding for my mum which means her care is free as she has lots of health needs which may be the case for your mum. I was lucky(!) enough to work in the health service for elderly patients before I gave up to look after mum so I knew my rights and what to ask for.

I notice that you live in Hampshire, as I do. I havent yet found a local Carers meeting to go to for support but there may be one near you if you can attend it. If you phone Hampshire County Council in Winchester they should be able to point you in the right direction. Also, Im lucky enough to have a very good District Nursing team that have helped with lots of questions for mum, but I know from experience not everyone is lucky with their doctor's surgery or community staff.

Finally, you will find lots of support on here. Everyone is very friendly!

Kind regards,

Hi Henry and welcome to the forum.

The answer to your question :
Does any one know of any ways, or information, to make it easier to handle the transition into caring and to manage the ongoing process?
unfortunately is - by experience Image And forums like this one Image there is also a very good book called 'The Selfish Pig's Guide to Caring' by Hugh Marriott; very worthwhile reading for anyone new to this situation (you can get 2nd hand copies via Amazon).

I care for my 85 year old Mum who is in the middle stages of Alzheimers and who also has a host of mobility related problems - I'm trying to get SS interested enough to advise on suitable day centres, but am still waiting for an initial assessment.

Hello HenryC and welcome

Unfortunately, it really seems to depend on where you live as to whether you will get help or not. I hope you are one of the lucky ones that gets the help you deserve.
I'm not one of the lucky ones as even though I can shout quite loudly, I still do not get help unless I pay a fortune for it.

At least on here friendship and advice are free!!

Hello and welcome to the forum Image
Hi Henry welcome ... I have been reading stuff on here for ages but am new to posting ...I thought I must let you know that there is a carers meeting above the Bridge cafe in Bridge St. Andover at 2.30pm on Monday 13th July if that helps...
Hi Everyone

Thank you for your welcome messages and advice - very good to get some useful and friendly comments Image

Tessie: Thanks for the thought but I wasn't able to get along to the meeting.

krys: Good to meet you.

Bluebird: Sorry to hear you're not getting much help out there.

Susieq: Sounds like a useful book; many thanks. Good luck with the SS assessment for your Mum. Maybe you need to chase them; I've certainly had to! Image You mentioned forums....are there any others then?

teresaking2002: My Mum managed to get paid for careworker visits after what seemed like loads of assessments, paperwork and meetings. Also - I have to praise the careworkers - on the whole, they're pretty much angelic. I appreciate your pointer towards HCC - thanks. The the D.Nurse was difficult to get on with at first, but has now become more level - we both had to work on that Image

Myrtle: I'll keep shouting then!

Thanks again everybody - it's good to be on here.


Take a butchers here Henry

Hi Rosemary. Many thanks!