Page 1 of 1

New to this Forum

Posted: Sat Sep 23, 2017 7:49 pm
by Garfield_1709
Hi,

I am a Carer for my wife, she has Fibromyalgia and ME, I am also the primary carer for our 3 year old son.

Additionally, I have my own medical conditions, 24 of them...

I CANNOT get help, Carer Support came out did my assessment, after badgering them for 8 months, they finally came out again due to a change of circumstances, updated the file, then I got a letter saying they couldn't help and would refer me back to my Social Worker... she came out and (no surprising) she cannot help either.

So I'm stuck, I have no help / support / anything for own medical conditions, my GP has done everything he can, so there is nothing none of them can do....

Found this site on Facebook and thought I'd give it a try...

G x

Re: New to this Forum

Posted: Sat Sep 23, 2017 8:32 pm
by jenny lucas
Hi, and welcome to the forum.

What kind of help do you want/ Financial or practical (or both!)

I would suggest in the first instance emailing the helpline (the phone is often busy) and outlining the situation, and the team of experts at Carers UK should be able to help - or, at least, explain why you're not getting any of the help you need!

There's also a wealth of experience amongst forum members, many of whom have 'battled' with the 'powers that be' on an ongoing basis, and they too maybe able to give you a roadmap through to what you are after.

In the end, doesn't it come down to whether or not either you, or your wife, is 'fit for work' - if you aren't, either of you, then you should be assessed as unfit, and be eligible for whatever benefits are out there for such situations.

My neice suffers from a wide range of 'issues', from chronic depression to IBS to FM, and she is receiving PIP, and her partner is deemed to be her carer, and is getting Carer's Allowance. neither of them are in paid employment. He has children, but not living with him. I don't know how that situation compares with your families, but it doesn't sound too unfamiliar.

That said ,as we know, there's always the dreaded 'Postcode lottery' issue to be taken into account.

How incapacitated is your wife, and you? Does it vary day by day? It does for my niece. See her on a 'good day' and she looks 'perfectly OK' - see her on a 'bad day' and she's in bed almost comatose. These 'systemic problems' like FM/ME do seem to be very variable, which may make assessement tricky - especially in a climate where SS is desperate to try and reduce the amount of support it hands out to folk.

Wishing you all the best - it's very tricky being the parents of a lively three year old if BOTH of you are 'sub-functional' so to speak!

Re: New to this Forum

Posted: Wed Sep 27, 2017 1:44 pm
by Garfield_1709
HI Jenny,

Thank you for replying.

I need a break.

Son is old enough to be at Nusery for 1 full day and 2 half days.

Wife - no longer has good days, its all bad days and worse days, most of the time, she able to get out of bed herself and shower, then thats it her "spoons" are gone for the morning, she is in bed again in the afternoon up for evening meal and then back to bed about midnight, she is on the best meds for her condition(s), her GP has done everything they can for her.

I am a joint claimant under her ESA, I receive Carers Allowance for her.

We did try having Carers in but the BEST they could do is 2 hour slots for a shower, 90 min slot for meals... so I am stuck, I have to be in the morning in case she needs help with the shower, I cook all the meals, I do all her meds, I do everything.

as for me =
I have High Functioning Autism (16 mental health conditions), 2 hearing impairments, 1 eye impairment and 5 physical disabilities. I am in receipt of PiP.

for me, I can get out but only in the mornings that our son is at nursery, so 3 days a week, I get to the gym come back, have a shower, start the housework, then lunch, quick relax, before son gets home, then care for him, cook dinner, showers all round, bed for son, bed for me.

Other days, the Agoraphobia and / or depression and / or anxieties kick in and I cannot get out of the front door.

thank you for replying, its nice to know there are others out there with similar things going on.

G x

Re: New to this Forum

Posted: Sat Sep 30, 2017 12:52 pm
by Anne Marie_17091
Hi,

I am also new to the forum. I came across the forum whilst trying to find out information regarding care homes. I must say reading some of the stories here are quite humbling and puts my problems into perspective.

My mum is 98 and has had dementia since she was 87. We have cared for her for 11 years but now here condition has come to the point that we are no longer able to cope. She can no longer climb the stairs to the toilet and is very unsteady on her feet and cannot understand the simplest of instructions. She is also visually and hearing impaired which adds to the difficulties we face. We have come to the reluctant decision the time has come to put her into a care home where she can be looked after by qualified staff with the facilities to make her life a little easier. It is a scary prospect and difficult to know where to start. Although social services are involved, as my mum will be self funding I feel a bit like I just have to get on with it without really knowing much about what I am doing. Right now I have more questions than answers but it is good to know there are people out there who have been through a similar situation and can give some help and advice.

Re: New to this Forum

Posted: Sat Sep 30, 2017 1:58 pm
by bowlingbun
Hi Anne Marie, welcome to the forum. There are lots of former carers here, who have made that difficult decision that their mum/dad's needs are so high that they need more care than one person can provide. Fire away with any questions you have, and we will do our best to answer them, or tell you who can.
You should be looking for an EMI home, Elderly Mentally Infirm, especially one that will be able to meet all mum's needs until she passes away. I know that's a horrible thing to think about, but it's the sad reality I'm afraid. If you go to the Care Quality Commission website you can search for all the homes in your area. Start by looking at those nearest your own home. My mum had physical problems, she went into a nursing home less than 2 miles away, and I could pop in whenever I wanted to. Also, make sure that EVERYTHING mum takes into the home has a sewn/glued on label. It will all be washed at a high temperature so nothing delicate, especially wool.