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Here's an intro - sorry it's long - Carers UK Forum

Here's an intro - sorry it's long

Tell us a bit about yourself here.
Hello everyone, I guess we all have to start somewhere and I hope this doesn't get too complicated once you'ver read it I'm sure you will see why even I don;t know if i;m on my head or my hells half the time. I am a married fulltime carer, I;m 46 and recently I;ve been quite worried about my health. There are a hell of a lot of things going on in my life aside from caring - legal stuff like fighting and asbestos compensation claim for my late father, and everything is taking a toll. Anyway this is who I care for:-
My 77 year old mother has early to moderate alzeimhers, it was diagnosed about two months after my Dad passed away just over two and a half years ago. he died from asbestos related lung cancer(but not the better known mesothelioma) and so far the calim has been very complex. We were living in a rough area and decided to buy my Mum's house from the council and build a granny annexe on the back. To cut a long story short the first lot of builders built "up to plate" then deserted, and I had to get another lot in to finish the job. This was very stressful for everyone particulalry as at the time my daughter had to share rooms with my Mum for what should have been about 10 weeks and ended up being 8 months! I got another lot of builders to finish off and now there is a crak in the wall of the new extension. They say it's not there fault so I need to try and take both to the small claims court to sort it out. Anyway Mum is now settled in there she has a bedroom, and living area/kitchenette with one of those small electric ovens with two rings on top and at present she can still cater for herself most days. She goes to a day centre three times a week(we pay for it), but in between can be very clingy towards me. She can nolonger turn on her TV, music centre etc and I have to change channels etc for her. She can't cope with visitors very well at all, and needs me woth her for any medical appts etc. Sometimes she is quite hurtful because she doubtsa things that I know are right, i know this is the condition but it breaks my heart when she argues with me and I am trying to help her. the rest of the family say if I ever go out she is very restless and moody unitl I come back and she keeps asking them if I've rung etc.
Next my husband - he has a fused lumbar vertabrae and other back problems whcih cause him a lot of pain and reduced mobility. He is a burnt out ex residential social worker and has suffered anxiety and depression for years he tried to retrain for clerical work, but was then hit ny the back problem whcih makes sitting for long ver diufficult. However he is having yet another go at trying to beat his problems and is currently studying his PC maintenance level three with view to trying to find a part-time job. He finds things like beding for cupboards impossible and even carrying something like four pints of milk from the car to the kitchen causes him great pain. In himself he is a very loving father and husband and the saving grace for us all is the incredible depth of love in our family, and I truly acknowledge this blessing.
My daughter is 19 at present both she and I are studying our European Computer Driving Licence level 2. I did it to support her. She has mild spina bifida, arrested non-shunted hydrocephalus, hearing impairment, ataxia, reflex sympathetic dystrophy, and socila and psychologicl problems. The education system let both my kids down badly, although statemented she never really got adequate support at the local comprehensive. Academically able in her first year at seniors she was seen as a potetnial stright A student! Sadly she eneded up in ahospital education unit where they only taught most subjects at foundation or imtermediate level. That sais she still managed to pull out 5 GCSE'ds at grade C or above!There have been suggestions that she has asbergers syndrome since she was about 6 years old, but despite repeated requests she has never been referred to a specialist fo assessmemnt. She tried GCSEplus at college but only survived one term her difficulties not the lessons or academia, but the panic attacks in crowded corridors, or the fact she came home hungry as she was scared to get food in the refectory, or that she was freeszing cold and tired having waited over one and a half hours for a bus that wasn;t crowded because she is not cofident travelling on crowded buses. Connexions and the local Job centre don;t seem to know what to do woth her, but they agree an assessment would be useful particulalry as there are specialist colleges she might then be able to attend where she might learn some of the life skills she lacks. Reflex sympathetic dystrophy is a chronic pain condition as a result of a fault in the neuropathic nervous system. She hads a part time voluntary job the idea of which was to provide work expereince, but it all went wrong when she beleived she was there to do office work and someone asked her to make coffee which she did not think was part of her job, and could not come to terms with etc.(Mind you had she made it there might have been prblems as her ataxia makes her rather clumsy). She has an unreal sense of danger etc, for exampl she will travel on a bus at 11pm at night and walk home form the bus stop alone preferring this as there are no crowds, whereas she could not do the same journey alone at mid-day! At present we have negotiated a deal whereby she finishes her ECDL level 2 and goes on to ITQ 3 in a couple of weeks time doing 1 day a week with me and 1 day on her own to increase her socila skills etc. Then we will rethink things in September.

My son(17) also has Reflex sympathetic Dystrophy, however after attending a pain management course he manged return to school part time and he too did very well in his GCSE's (5 grade C or above)gaining the highest English mark in the school and getting A's in both English language and literature! he is currently in year 2 of a performing arts diploma at college and is doing well. However his condition means he lacks stamina and finds concentration difficult.

I find that when I talk to professionals etc they look at the role I play caring for one person or the other but they dont; seem to appreciate the overall pictrue. For example the bulk of physical tasks fall to me, I attend medical appts wityh my Mum hubby and daughter as all need support. I know Mum is lonely and frustrated so most evening I go in with her for an hour but then I feel I'm neglecting MY family. My daughter gets frustrated because she wants to work has the right ethos and academic ability but can't cope with "people situations". I have three (teo ours one my Mums) and they are often my sanctuary. But I really want to be able to talk to someone about things like the painc attacks I;ve started to have a night. I've been on and off anti depressants as long as I can remember, and I'm on them at the moment. But I don't find it easy to talk to the gp or anyone. Once beofre I asked for a carers assessment and they sent me someone to do 2 hours ironing a week, it was suppsed to be the same person all the time but usually it was one of three eastern european ladies who could barely speak English and the idea of me being able to offload to them was crazy. Sometimes they were so slow there was still loads left when they had gone, and sometimes it clasjhed with another appt etc, so in the end I just told them not to bother as it was more trouble thatn it was worth. At the moment I'm very tired - extremely tired physiclally and mentally, I actually physically hurt if I try to do something like vacuuming and I'm very scared I'm close to physical collapse. mentally I feel tired but strong. I kinda know this is my lot and there's only one direction to go in. I'd love to hear from other carers of multiple persons and how they feel, and how they recharge thier batteries.
Best wishes to all
Firebelle
Hi Firebelle,

Welcome to the forum. There have been a few people who have posted here who have cared for more than one person and talked about the exhaustion and impact on their health. One of the points that carers have raised when we did the consultation about what the Government needs to change to improve carers lives was the need for Carer's Allowance to recognise different caring circumstances, with one of these being caring for more than one person. This is something that will be raised on Thursday with the Benefits Minister, Anne McGuire when she attends our Carers Summit in London.
Regards,

Gavin
Hi Firebelle,

Just a quick line to welcome you to the forum where you will meet a great group of people who can relate to what you are coping with.As much as we can help support you and listen to your circumstances,it certainly sounds like you need some practical help at home.It may be time to consider getting another assessment done.

Its hard at times to use just typed words to give support but you do have the option of phoning carersline too.
CarersLine can offer advice on any issue to do with caring and disability such as benefits, hospital discharge, employment issues, making a complaint, getting a social services assessment and much more.
The service is free. Unfortunately the service is currently only open for 2 days a week. However we do have an answerphone service if you leave details an advisor will call you back.
Telephone 0808 808 7777
Open Wednesday and Thursday 10am-12pm and 2pm-4pm

Have you considered contacting your local carers group too.Not sure if this is close to you...

Bristol and South Glos. Carers Centre (PRT)
The Vassall Centre
Gill Avenue
Fishponds
Bristol
Avon
BS16 2QQ

Tel: 0117 939 2562
Fax: 0117 965 5847
Email: admin@carers-bs.org.uk

It can be hard making that 1st step contacting the group but in most cases it is beneficial to those that use them.As well as making new friends,hopefully you will find out more about what is available in your area.

Until I lost my mam last year I cared for 2 people and I know exactly what you are saying about the tiredness,about not being able to split yourself in two cos you are needed away from your own family.We push our bodies to the limits and if you're anything like myself and many other carers,we go on to automatic pilot even when we feel we have nothing left to give.More often than not we neglect ourselves and put everyone else first but Firebelle,from your posting,so many depend on you, that somewhere along the line you need see to yourself first too,for everyones sake,not just your own.If you take ill who is going to care for them then.

I look forward to reading more from you and getting to know you and your family more.
Other members will be along soon to welcome you too.Weekends are a little quiet.

Be strong Firebelle,you have come to the right place.
Rosemary
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