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Hi, I'm new! - Carers UK Forum

Hi, I'm new!

Tell us a bit about yourself here.

I have decided to post to share my desperation. I am currently caring for my 38 year old wife who is suffering from severe liver failure and awaiting a transplant. Her condition leaves her confused, incontinent and lethargic. This means that she is incapable of doing almost anything for herself. Oh and I forgot to mention our 3 children aged 12, 10 and 9!

I am simply running around trying to juggle everything. Our extended family do not want to know and seem to have buried their heads in the sand. The attitude 'out of sight, out of mind' seems to be their motto!

I am meeting myself coming backwards and don't know where to turn. I am so tired and feel lonely.

In just over a week the schools go back and I need to get back teaching to earn a living, I daren't even think about that at the moment.

I hope that somebody will understand and 'the phone call' will cone soon with a donor organ!

Welcome to the board! Sorry to hear that you are having a wait for a transplant. There is another possibility though some people are really not keen and I can understand there concerns, we went through a lot of doubts, worries, religeous concerns etc.

In 1993 my father had a transplant from a specially bred pig. Apparently pigs are being bred for medical reasons as they are the closest genetically to humans.

This transplant took place in 1993 and my dad died in 2012 being 4 days off his 87th birthday. It certainly seemed to have served him well and he was a very young looking person for his age.

It could be something you might like to discuss with your wife's specialists.

Hi, welcome to the forum. Are you getting any help at all? So often attention is focussed on the ill person, that their carer becomes invisible.
Hi ASG, I'm not surprised you are so tired - physically and emotionally. It might be worth seeing if there are any young carer groups locally to you. This would give your children a break from the situation, they could talk to other children in similiar situations AND it would give you a few hours off from having them at home on top of everything else.

Have you had a carer's assessment? Has your wife been assessed to see if she is entitled to any help?

Maybe it is time to make try making direct and specific requests for help to the family (if it back fires at least you tried.)

Hi and Welcome to the forum Image
You might like to give yourself a bit of homework - a few lists - what upsets you most, what you struggle with most, what you need most. Just sitting down and working this out, in order of priority, can be amazingly helpful in getting down to the "bare bones" of a situation. Also doing a pie chart of how you currently spend your day, and how you'd like to spend it - don't forget your "me" time! These ideas came from a book I read a few years ago, shortly after I was widowed. They led me to change my life significantly for the better. I can't change the situation I'm in (son with SLD, elderly frail mum) but I can change my response to the situation. Simple things like using clothes that don't need ironing; not beating myself up if I'm not doing everything perfectly; Saying "No" to requests for me to do things for other people; have collectively made life a lot easier. Slowly I realised that I am my own biggest slave driver! Now I tell myself that "the world won't end if I don't ........" (My sons both regret the fact that I don't spend as much time in the kitchen baking as I used to!)

Thanks to everyone for taking the time to reply to my message, there are some great ideas for me to try, it made me feel much better in myself knowing that others had similar experiences and were taking their time to offer me help and support. Thank you everyone x.
Hi and a warm welcome to the forum. x x
Hello and welcome Image
Hello there, little wonder your feeling a bit jaded! Hope you get a little time for yourself, and that the all important 'phone call' comes soon. Take care Image