My mum is terminally ill with Usual Interstitial Pneumonia. While waiting for a double lung transplant on the priority list, this year has seen the arrival of lung infections.
My mum first contracted one in January and had to go to A&E. This cleared up after a few days. The most recent one has now left her in hospital for over 2 weeks and is there as I speak.
The Doctors at the hospital she is in mentioned that she may be able to come home soon however after a trip from Brighton to Harefield Hospital for further evaluation (the first time my mum has had to leave her bed since being in) absolutely exhausted her.
She currently struggles breathing while eating, using a Kermode and pretty much any physical activity while on oxygen 24/7.
We are waiting to find our as to whether the infection has gone and the condition she is now in is the result of the deterioration of the lung caused by the infection-The worry is that she may now be too weak to undergo the transplant.
My major concern is that if she is allowed to come home soon as nothing more can be done medically in hospital, will it be a case of her having to lie in bed/sit on the sofa and not be able to move until a carer comes by to see her. This is a thought that does not bode well with me as I do not want to leave her on her own.
If anyone can help me with their own experience / knowledge of what I should be entitled to take off work that would be great. I get 21 days holiday of which I plan to use if she gets a transplant / further down the line if she doesn't get one as I do not want to have to worry about money during what will be the hardest part of this. With regards to compassionate leave, although my Mums condition is very sever, I don't know whether we are talking weeks or months to even be able to inform my employee how much time I will need off.
I obviously cant give work any advance notice as the infections come out of no where and although her condition is very bad, I don't know when it's going to next deteriorate further.
I'm 26 and on a basic salary so I can't really have time off work unless essential, as it stands I have been able to shorten my hours from 9AM-6PM to 8AM-2PM for the time being.
My brother has suggested a care home however as my Mum is only 56, I would not like to see her in that environment. I have looked briefly into being my mothers full time carer however as I contribute to bills and her rent, I can't afford to live on the carers wage of just under £60.00 a week.