living with mum and her fibro : months on

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

living with mum and her fibro : months on

Postby creativedaughter » Sat Jun 15, 2013 6:38 pm

Hello everyone ,

I posted sometime ago asking for advice on how best I could help my mum who is a fibromyalgia sufferer to , in the past following the advice I got from this forum I tried my best to help her in claiming DLA for her fibro as my mum since losing my dad 4 years ago has been in a bad way struggling with even simple house work , constantly worrying about finances and how she's going to manage long term even thinking she has to force herself to work a job despite feeling how I'm sure many of you understand. Unfortunately DLA declined mums application stating she lacked enough proof and specialist evidence she even has fibromyalgia and that it is really as bad as we say, hearing this my mum gave up and didn't know what to do as her doctors brush her off and she's lost confidence in confronting them for help when she is unwell.

I only recently graduated from university and work numerous part time jobs as a cleaner and others throughout the year when I'm needed , my younger sister recently finished college to and we both live in our family home with mum. If anything I just wanted to ask advice and speak about my concerns and whoever reads this post I appreciate you taking the time to. I studied a degree that entailed me starting my own business at the end not necessarily going out job hunting like many others.since I finished I can't help but feel I should of done something else that would have been more financially sustaining ( aside from pursuing my passion like I did ) and in turn could of helped my mum out and provide myself some money to start to enjoy and live my life.

Many would say you need to look after yourself and very true I know this but it truly is so so hard as when I treat myself ( which is very rare) to something nice clothes wise or even a meal out with the few friends I have ( i find it hard to make friends due to my shyness) when I come home I instantly feel so sad as my mum can't afford to go out or do the same because despite the money myself and my sister pay and money mum currently receives she has very little a life of her own and often spends days in the house, aching in bed because she did to much the day before , tired because she couldn't sleep till 4 in the morning , depressed because she hates feeling the way she does, gets frustrated because she's not as strong as she used to be and upset because she can't support herself and her family.

I wanted to ask has anybody currently applied for PIP ? My mum currently gets widows pension however this is apparently going to stop for her this coming august and I've suggested she re-apply for incapacity benefit which she had before it was switched to widows . By merely mentioning this however brought her into a panic and she became very upset at the prospect of going for medical tests/examinations again as in the past she was again not believed by others.

Thank you in advance for your time.

Creative daughter
creativedaughter
UKFM Member
 
Posts: 10
Joined: Mon Sep 24, 2012 11:09 am

Re: living with mum and her fibro : months on

Postby clubsound4 » Sat Jun 15, 2013 7:03 pm

Hi, my partner has recently applied for PIP although he doesn't have fibro the form is still the same,,he rang up and asked for the claim pack which has now changed,,the lady asked loads of questions ie name,dob,docters name, address etc apparently they do this over the phone now which saves time as they put it directly onto their computer to start your claim,, the form I found was much easier to fill in, and certainly wasn't as big lol,, you get approx. 2 weeks to fill in and return it as it is smaller ,, so fingers crossed for him and good luck with yours !! regards :-D
clubsound4
UKFM Member
 
Posts: 68
Joined: Sat Mar 09, 2013 11:15 pm

Re: living with mum and her fibro : months on

Postby MichelleJ » Sat Jun 15, 2013 8:41 pm

Re the benefits I'm on dla my review was just before the pip came in. Incapacity is now replaced by ESA. If I were you I would start by getting your mum properly diagnosed before you reapply as I suspect they'll Only say the same again otherwise. It's hard enough making them believe you even with medical evidence. So I would ask the g.p for a referral to both a rheumatologist and the pain clinic. Take with you a full list of your mums symptoms and how they effect her and what she can and can't do. Give them a copy so its on her records. If the dr refuses to refer go and see a different one or even change practices if you have to, you really need a supportive g.p when fighting for benefits so that would be priority for me. But a consultant diagnosis will give you the medical evidence you need as it will go in writing and you can request them to write a detailed letter for you. Pay if you have to.

Then reapply for pip and ESA, my benefits advisor did my dla first then my ESA appeal when that came back as she said they would look at what dla did. Currently I'm in the work related ESA group but that means I don't get any money now cos my 12 months ran out. Not had any for over a year now. If she qualified for income related ESA its indefinite as is support group. But contributions based work related is time limited. My dla I now get high mobility high care but its took a while to get to that. For 2 years I had high mobility low care which I got on reconsideration. I have a council approved care plan in place too cos I need carers and this plan counted as evidence.

Just thinking, excuse me for rambling Hun but I type as it comes in my head lol, if your mum struggles with daily tasks, why not request an occupational therapy assessment for her. Ring adult social care at the council to arrange it. They will assess her and provide equipment that would help her but also its more evidence of the help she requires for dla. They come out and are really nice so on't let her worry about it cos they're on her side.

I'd ask cab or a council benefit advisor to fill in the forms for you as they know how to word things. But get diagnosis in writing first, find a supportive g.p, get assessment then reapply. Good luck with it all Hun. Oh, and don't feel guilty you need to live your life too and it sounds like your mum is lucky to have such a caring daughter.
Dx with fibromyalgia m.e/Cfs and asthma
MichelleJ
UKFM Member
 
Posts: 350
Joined: Sun Mar 27, 2011 4:27 pm

Re: living with mum and her fibro : months on

Postby denys » Sun Jun 16, 2013 1:42 am

I agree with the other posters you need to get a proper diagnosis, if the doctors your mum is seeing are not helpful, then maybe you will need to look into changing to a more sympathetic practice. If she can get some more supporting evidence then hopefully she wont face the same disappointing outcome. If she does get refused, then appeal. Getting help from CAB is a good idea as they would help with any appeals as well so good luck and :fingerscrossed: she will fare better this time
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: living with mum and her fibro : months on

Postby migrembe » Sun Jun 16, 2013 8:39 am

Dear Creativedaughter,

From a mother who has a daughter who cares like you and from someone who has Fibro too, this is for you.

You spoke about money. If you and your sister are paying regular sums of money to your mother keep it to yourself, otherwise someone will find out and take it out of whatever money she is getting.

Others have already spoken about the different benefits she may be able to get. If she is retired Age Concern would help her sort out which benefits she is entitled too or a Benefits Advice office. If she owns her own home and it's still mortgaged they can help her with that too. if you and your sister are living in the family home and it is rented, even private rented and one of you move out your mum could lose housing benefit because of the new bedroom tax.

She needs to get diagnosed properly and if the GP she sees normally won't listen then she will need to try every single one in the practice until someone does. She also sounds like she could do with some grief counselling and some anti-depressants. She may not want to take them but those FMS are known to have depression too. I suffer very badly. Not sleeping doesn't help either and often anti-depressants help you sleep.

I have a daughter who is home from university for the summer and is already saying she is coming back and staying at home to look after me, she is NOT!, NO WAY NO HOW, NO NEVER! Don't presume your mother wants you to do that, she will want you both to have your own life's so go ahead and live. My daughter can come clean the house every week and cook me a fridge full of food but she is not spending her life looking after me. I, like your mother, am on my own, but for a different reason. Encourage your mother to get up every day, just being upright for an hour at a time can be hard work to begin with. Cook her breakfast and make sure she gets up and eats it at the table, etc. While you are at home stop expecting your mother to shop, cook, clean, wash and iron for you, she will want to do it, but whenever you can do it for her, do so.

It is a mother's duty to care for her children - or is it? So what can you physically do to help?

You talk about money but if i had all the money in the world i wouldn't be able to walk any further or feel any less pain and the depression wouldn't be any less, I wouldn't be able to walk up the stairs any easier and getting dressed wouldn't become any easier.

Beverley
migrembe
UKFM Member
 
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am

Re: living with mum and her fibro : months on

Postby creativedaughter » Sun Jun 16, 2013 9:09 am

Thank you for the help and advice , in no way does my mum cook, shop or clean for me I do everything myself even the weekly food shop. Again thank you for the replies.
creativedaughter
UKFM Member
 
Posts: 10
Joined: Mon Sep 24, 2012 11:09 am

Re: living with mum and her fibro : months on

Postby migrembe » Mon Jun 17, 2013 6:45 am

I am not saying she does. Take Care :flowers:
migrembe
UKFM Member
 
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 8 guests