Carers -Lets support each other

tattoed_bum

hi everyone i care for my partially sighted deaf son , does anyone somedays just feel overwhelmed by all the appointments the different hospitals you need to attend, i certainly do .
there are days when he is a complete joy to be with and some days when it is really hard work

D&DD

:hello: Hi everyone
Another one here caring for my gorgeous Autistic son, he's my youngest. I have 3 boys, my middle son has a spinal condition (scoliosis) and this has caused all manner of probs with the rest of him!Just had a huge op to have rods put in so currently climbing the walls at home...:D *edited to say me not him lol*
Its lovely to meet you all :T

sharon59

Its great to find others in similar situations l feel really lonely sometimes coping even though l have a supportive family and we get respite and she attends a fantastic day centre.she has been with us for 4 yrs.My MIL kept her on a very tight rein and dominated her really.She was taken ill and passed away over a 10 day period 4yrs ago-just before xmas.I was just getting over a mastectomy and my SIL suddenly had to be uprooted 75 miles with no preparation.we had a few teething problems!!!!!!
I am finding her diagnosis in the last 2 weeks of alziemers on top of the Down syndrome hard to cope with.She was really becoming more independant and finding her likes and dislikes.She chose a complete change of hair style.Sadly we noticed odd lapses in memory and ability which over the past year have become more and more obvious.This weekend she is having respite so we get a chance for a lie in and to relax a bit.Despite it all l would never change our decision to have her live with us
hello to everyone!

parisjordana

Hi ALL
another mum here and carer......I have a son whos on the autistic spectrum disorder hes nearly 18...hard work and I tend to repeat myself everyday with him.....It gets lonely some days doesnt it,even though in the sense of the word you are not alone if that makes sense,I see friends living their lives and they seem to have perfect lives and time to pamper themselves....upon these days I feel so sorry for myself but thankfully they are very rare other days I think yep Im proud of my son and as a family we have coped and survived,and we are all still breathing and alive to be thankful for the day ahead,thank god I have these days most days......anyway Iv waffled on enough but im sure you all have a good idea of what I mean.

zoecx

Hiya all

I care for my 5 year old son who has a condition Prune Belly Syndrome which means he has renal and bladder problems (he has to wear a catheter full time and gets a lot of severe infections - 12 admissions to hospital since last November so far.....) It's very isolating as life revolves around medicines and catheters and wee!!

I don't know anyone else with a child with medical issues and find people tend to keep their distance too. I would love to return to work but my son requires too much time and I can't predict when he will take a turn for the worse - I think it's terrible that carer's put in so much time through the day and night for a grand total of £50.55 - whoopy-doo!!

Zoe x

Taffyscot

Hi all,
I am a carer for my partner. He has Parkinson's disease and is wonderful really but is getting much worse freezing on the spot and shaking more. I do worry so much about him and worry how many good years we will have. He is in a lot of pain with his back and falls asleep all the time. Sometimes it is hard when he falls asleep in the middle of conversations. He loves to cook but it takes him ages now to make anything. I just turned 60 and was looking forward to getting my old age pension after years of working in the UK and also paying into the British pension whilst living in Canada. Imagine my surprise after 4 years of being my partner's carer to get £4.60 a week carer's allowance because I get the other £46.00 old age pension. I used to get £50.00 a week carer's allowance before I got my pension. Why? Does my partner need any less care now that he is 4 years more into the parkinson's disease? It seems that the carer's allowance is an overlapping benefit with the old age pension. Does not make any sense to me. The department had even asked me to pay more money into the pension to make my pension up before I turned 60. What would have been the the sense in that. They never explained that my carer's would be cut by the same amount. Sigh
Taffy

parisjordana

aaaaaaaaaaawwwwwwwwwwwwwwwwww Taffy Im no good at pensions and other stuff but just want to send you a big hug((((((((((((((((((((hug)))))))))))))))))))))))))) hopefully someone will come on here and help you out.....

sheldon08

sharon59 wrote: »

Its great to find others in similar situations l feel really lonely sometimes coping even though l have a supportive family and we get respite and she attends a fantastic day centre.she has been with us for 4 yrs.My MIL kept her on a very tight rein and dominated her really.She was taken ill and passed away over a 10 day period 4yrs ago-just before xmas.I was just getting over a mastectomy and my SIL suddenly had to be uprooted 75 miles with no preparation.we had a few teething problems!!!!!!
I am finding her diagnosis in the last 2 weeks of alziemers on top of the Down syndrome hard to cope with.She was really becoming more independant and finding her likes and dislikes.She chose a complete change of hair style.Sadly we noticed odd lapses in memory and ability which over the past year have become more and more obvious.This weekend she is having respite so we get a chance for a lie in and to relax a bit.Despite it all l would never change our decision to have her live with us
hello to everyone!

Hello sharon.

(((((((hugs))))))) to you first because I admire you for supporting your SIL. I'm glad to see you are able to access respite and she attends a day centre. Not only do you need the rest but it enables your SIL to make relationships independant of you. I would love to hear more about her and how you manage her Alzheimer's.

shel.

wilsons

Verianna wrote: »

:T

I have DS with !!!!!! quadreplegia cerebral palsy. He is 20 months old.

Always nice to come somewhere where people understand how hard day to day can be from a carer's perspective.

Just to make things even better DD is ill tonight as well so 2 children crying at regular intervals makes for a sleepy mummy and daddy

Our 1st son also has !!!!!! quadreplegia cerebral palsy, only 6.5 months old! Been difficult coming to terms with it all! Really only getting him home now as he has spent most of his wee life in the hospital. Broadband installed in the house 2 days ago, so hope to make good use of this site. Meeting with CAB next week so hope to get a lot of money matters sorted out. Hope your wee ones are feeling better; our wee man is snoozing at present...

savingforarainyday

Hi everyone.

I am carer to ds who has an ASD (Autistic Spectrum Disorder) and Spld (Dyslexia). We home Ed. so I am with him full time, as much as you need to be for a 14 year old, for him it is more about planning than supervision We have been through a lot of the Autistic traits that are common amongst our children, so I understand the routine and the thing about sounds. ie once when he had a cold he said from the other room in a silent house. "I can hear you drinking that coffee" He has learnt to cope/has strategies for a lot of his difficulties, and I actually really admire him for it. I also have dh, and dd who is away at college studying health and social care.