Hi everyone, I am new to this site. Joined it to hear other peoples stories, be supportive and receive support as I know some of you are going through the same thing.
I am 23 and my mum has cirrhosis of the liver, this is NOT due to alcohol, as she was infected by Hep C at the age of around 21. I was lucky not to have contracted it through birth, neither has dad.
Now she has epilepsy, psoriasis (skin prob, like ecema but 10x worse) had a stroke at 20 (wouldnt know if you saw her) arthritic feet, toes ,and hep c hence has turned into cirrhosis of the liver.
I love my mum so much, I am an only child and find it hard to deal with sometimes. Mum and Dad are still together and he looks after her, but she is my best friend so I am with her all the time, when Im not working or at home with my fiance.
Life is somewhat different this year, she has been sick a fair bit (she still works as a cleaner, her work know ALL about her health probs and are EXTREAMLY supportive). Things have changed, mum is still mum but her body doesnt let her do the things she wants anymore. She has had two hospital stints in the last yr, both in regards to gaining fluid in the abdo, legs and ankles, it was horrible, they thought serious but went down with dosage of fluid tabs.
She has good and bad days, she tends to sleep alot, but sometimes has insomnia which she can take half a serapax if she needs to, but she trys not to take medication she doesnt need as she has to be on SO many diff tabs. She has pains, sometimes feels so nausaus in the morning she cant work. In the morning she has a puffy face and eyes and just looks worse for wear, her eyes aint as clear any more even thou they are not jaundice.
Mum is my best mate EVER and I cant even begin to IMAGIN what life would be like without her. Sometimes she hates having all this wrong with her she tells me 'i would rather dig a hole and be dead than going through ths all the time not knowin how im goin to feel'
I hate hearing that, she has a social worker at her work she sees. so that is good. Im going to centrelink on monday to discuss the disability pension and a carers payment for me as i care for her when im not at work.
He doc said she shouldnt be working at all but she continues to, so we are discussing short 3 hr shifts.
Mum feels her quality of life is draining cuz she cant do all the fun outgoing things she used to. it kills me.....
My fiance is very supportive and said if i need to look after mum not too work. My last full time job wanted me gone cuz mum went into hospital one day and i wanted to leave and they said they couldnt have that happening, so now i have a casual job where it is flexable and work know about mums illness...so i can work around 20 hrs a week.
Sorry I have gone on, but I have so much to say and I would like to talk to others that have this going on with a loved one, so I know im not the only one!! Please!
Thank you stay safe x0x00x