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.
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Captainjones
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You are in a very difficult situation Captionjones and I feel for you. I presume you live with your mother? Does your mother get PIP (formerly DLA) ? If not she might be entitled to that. Does she have a terminal diagnosis of 6 months or less? If so special rules will apply and she would get the maximum PIP which would certainly help with the bills. Your best bet is to ring the helpline number - click on the red balloon - and ask them. They have experts in benefits there who will be able to advise you. There will be someone there on Monday. Let us know how you get on. xx
I live with my Mum and aim to until needed otherwise. She gets the Personal Independence Payment yes. She also gets a contribution of housing benefit.
Unfortunately after a Divorce and selling her house many years ago she no longer has any savings and Brighton's an expensive place to live even with this help.
The dilemma is I need to work for the money, but it's looking like the rate in which the deterioration is happening makes this difficult especially having time off unpaid to save my holiday allowance for further down the line.
Oh CaptainJones I am so sorry to hear of your Mothers illness, she certainly does not sound as if she can be left alone when she is discharged. I do hope that there is some help you can get you help you to care for her
As was suggested do phone the BLF to get their advice
I am not sure how well you have to be to undergo a transplant....the doctors at the hospital may be able to tell you
You are very young to have to be taking on these kind of issues and decisions
I do hope the BLF can offer some help to you
Your Mother is lucky to have such a caring child
Love Sohara
So sorry for you & your Mum,what an awful position to be in.
As Sohara said,Mum is lucky to have such a caring child.
I Realy can't add much,the two of you,need support,is there any other family,that could offer you support? Your Mum is so young,i know you have a brother,& can understand about your reluctance about the care home.
What about the palliative care services? I have always understood they are very helpful.The BLF to of course!
Do let us know how you are managing,we're always here,to lend an ear,Love to you both,Wendells xxx
Register as a carer anyway with your local council, they may be able to help with equipment and support for you! I work full time and care for my Mum, my council is looking at installing our flat with a bath lift and gives out annual one off payments towards something useful such as gym membership or a washing machine.
How do you find working full time and looking after your Mum-time off when her condition deteriorates etc?
May I ask what is her condition? We have a support worker from the hospital coming around tomorrow afternoon to assess my Mums flats to see what aids can be installed to assist her-the issue is walking from A-B. At the moment standing is an issue.
Do get in touch with the BLF people as they are very helpful and also Citizens Advice Bureau could be useful and provide information. I do wish you and your poor dear mum well and hope things improve very soon. Do let us know how you get on. Take care. xxx
Hiya. Sorry to hear of your mums illness. I wonder do you know you can earn up to £100 a week and still get carers allowance, so you would get £160 a week. Is that more doable for you. Maybe can ask your employers to cut your hours, so you just get £100 a week. Hope this helps.
Also phone the help line as they may have more advise for you. x
I think you must ring BLF helpline. It's the cost of a local call from a landline, they keep office hours and I believe they call you back after a few questions - 03000 030 555. Do ring, they are very knowledgable both in benefits advice and medical advice - also emotional advice which I think you will benefit from. You are too young to have to deal with this on your own..
Nursing homes are not full of elderly people btw, it maybe that she needs to go somewhere for a few weeks to build up her strength by trained people.
I think you need to tell the authorities you cannot give up your job ( whether you do is another matter). It's possible you will get very little help if you offer to give up work and then you may have difficulties getting back into the workplace.
You obviously love your mum very much, just wanting you to be mindful. It is very very hard to care for a loved one. Governments love it when family members do the caring because it saves them thousands.
All the very best to you and your mum. Please ring that number xxxxxxxxx
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CASPIANA
Looking for some advice for dealing with a terminally ill relative with IPF
Question regarding my mum Im really worried, Pleas help if you can x
