when a carer becomes cared for

Replies

By doug

Re: when a carer becomes cared for
Fri 28 Mar 2008 21:50

hi granny
i know how you feel while i still have my health
i worry what would happen if i took ill touch
wood there is nothing for carers if they take ill
maybe in other parts of the country there is
but ive never heard anything here in norwich
so i hope i never get really ill i dread what would happen my wife has multiple illnesses
and a lot of nurses dont understand how too look
after people like that! never mind doctors
hope things work out for you all the best

By loopy

Re: when a carer becomes cared for
Fri 28 Mar 2008 21:57

i cannot afford to be ill. It scares the pants off me what would happen to my daughter if i was taken ill. I try to keep myself healthy at all times but you dont know what is around the corner.

By doug

Re: when a carer becomes cared for
Fri 28 Mar 2008 22:10

hi loopy i wonder if anybody else
feels the same way

By moonstar

Re: when a carer becomes cared for
Fri 28 Mar 2008 22:20

I'm just recovering from my second bout of bronchitis in 6 months, and I still had to care for my 11 year old son with no help from outside. An added complication this time was that he was also ill with asthma at the time when I was really unwell, and then he was (and still is) on holidays for Easter.

This was bad enough, but it is a constant worry what would happen to him if I was hospitalised for any reason,

I try my best to avoid getting sick, but can't always be prevented.

By Nasrin

Re: when a carer becomes cared for
Sat 29 Mar 2008 07:36

Hello all
I am new to this. I have been a carer since he age of 12, now I am 30. At the moment I care for my mum and sister who both suffer from schizophrenia. I have husband and a dughter aged 4. I also work. My health is so bad that I never feel good in myself. Never have the energy to do anything. I know my life is catching up with me. At the same time I am so scared of falling really ill as to be hospitalised. I amscared what will happen to my family if I'm too ill. It is not looking good though! My mum and sis live together and I see them twice a week and speak on the phone every day. That phone call once a day has become too much pressure for me. In the weekend I do their shopping, take them out, cook, clean and spend time with them in thier house but I do all these tasks with so much pain in my body and my mind never seems to be with it. I am find ing things so hard. My health seems worse than the people I care for but no one cares or understands. I totally understand what you'r eall going through.

For a whole moth now I have been having problems with my throat and severe exhaustion, I keep going to the docs and they say I need to rest. The thing is I can't rest. As soon as I have time to myself I feel more ill. All the bad thoughts come flooding in and then I want to be busy just not to think about all the worries.

I know I should have a holiday but I'm too tired to book something. Also, to leave them behind is too much of a worry. I know I can go away for a few days but I don't have the capacity to arrange this at the moment.
I really wish someone would take care of me and make all my decisions for me.

I know this is too much to write for a first timer nbut I had to let it out.

By kerry.

Re: when a carer becomes cared for
Sat 29 Mar 2008 08:08

hi granny,
This is so typical!
a couple of yrs back my partner had a simple op that went horribly wrong thanks to the hospital.
therefore he needed care as he wasnt even supposed to 'lift a kettle to make tea'!
Problem with this is that i also have two severely didabled and incredibly demanding young boys.
so... what extra help did i get????
hmmmm... oh yeah thats right.... nothing, apart from a couple of extra nights respite (so instead of 2 or 3 i got about 4 in one month)
this went on for months. I was running home completely alone, caring for him (and he felt so guilty even tho it wasnt his fault) also the boys plus two daughters, and i was at college at the time.

nasrin, my throat too also is the first to suffer when i am very tired and stressed...
if your doc is saying you need to rest ask him/her how?
perhaps they could have a word with your local social services on your behalf?
have you had a carers assessment from social services?
it should state what your needs are (not just the ones you care for) and it is legal.

i read in one of our fragile x newsletters once:
"I want to live one day longer than my children".
this was written by another parent of kids with fragile X but it applies to us all i reckon!

By granny

Re: when a carer becomes cared for
Sat 29 Mar 2008 09:20

Thank you for all your immediate responses. the overall message ws the same we have no one who truly understand our fears or responsibilities.As to an assessment I had one eye stacks of medication and wasin plaster from shoulder to the wrist and was told by a social worker with a very bored voice "Mrs **** dont you drive"
We are well able to define what we need but there is no common sense.
Perhaps we need a conference on just this.
I like all of us have developed tactics but there is enormous lipservice and supposedly growing regard for us. in reality the common sense approach has gone.also the huge responsibility of proving need and the enormous load of paperwork along with the stress of getting support from the necessary agencies is shocking.
administrative workers given important roles in assessing key information all too frequently are unable to assembkle and read through the complicated paperwork associated with complex needs.
As we grow older and more of our family members need support it is terrifying.
young people with serious emotional problems simoly do not understand a carers illness.It exacerbated my grandsons so badly he became totally withdrawn and couldnt bear to look at me.
My daughter became on obsessive carer and was quite frank in that i smelled like an old dying person. "dont breathe near me " she used to say.We worked out our daily meals but because she is obsessive we lived off Marks and spencers chicken kievs for weeks.
Assistance is budgeted for we just dont get it because the funds are redirected elsewhere and the provision is in the hands of the able bodied seeking to keep their jobs.

By Gingatossa

Re: when a carer becomes cared for
Sun 30 Mar 2008 23:51

Have to say, alot more needs to be done by the Government on this issue! I'm still transferring my 12 year old daughter with severe global development delay and profound multi-complex health needs, in and out of my car as it has taken me an age to sort a car out via motability due to issues with the DWP etc..... i need a wheelchair accessible van (which is now on order and will hopefully be here by July!!) so not only do i have to lift her in and out, i also have a very heavy wheelchair (discovery base and foam-karve seat) in and out the boot of my Renault Scenic. I have damaged my shoulder and trapezius muscle and have recurring problems with muscular pain in my neck and back. My daughter is life-limited, does this mean that when i have to return to the world of work, i will end up living on pittance benefits as i too will become disabled? My daughter is 5ft approx. i am 5ft 4ins. I weigh under 9 stones, my daugher weighs 35kgs and is unable to weight-bear and has no voluntary movement........Us carers need all the help and support we can get!!

By goddess57

Re: when a carer becomes cared for
Tue 1 Apr 2008 11:19

Hi granny,
I understand to where you are coming from life is a hard and not easy,I am not well at the moment and on antidepressants and email the trust for help to get my daughter some kind of care package shes not got anything at the moment and leaves school in June this year.My partner is also not well and I look afer him to life isnt easy for all of us who care for someone and more so when its family . Sorry I cannot make you feel much better and I HOPE one day we all get help that we need so much ,goddess.