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Firstly hello and caring for mum with IPF - Carers UK Forum

Firstly hello and caring for mum with IPF

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Hello all

Firstly, having stumbled onto this site, I just wanted to say what an amazing job everyone is doing caring for their loved ones and how admirable it is.

I came on here searching for answers, after having a frustrating day, not really knowing this site existed and reading posts on this forum makes me appreciate the vast amount of people out there in the same boat as me, with the same frustrations and quite complex situations - I commend you all - you are amazing! Never forget that!

A little bit about my situation - My mum was diagnosed 3 years ago with Idiopathic Pulmonary Fibrosis. The prognosis of which is on average 3 - 5 years and is classed as terminal. She had a hospital admission in November 2017 which has left her on full time oxygen and her condition has got increasingly worse. I live a 3 1/2 hr drive away so had been visiting every month or vice versa (when she was well enough) I moved home just after Easter as I was uncomfortable with her deterioration. I am employed full time so have had to drop that to care for mum. She has really picked up since I have been here and even started to put on weight! (very good!)

Has anybody any experience of dealing with family with IPF? There's little detailed information out there about the later stages - everything seems quite generalised which doesn't help when mum has a symptom because I often end up googling to know if its part of the condition and how best to tackle it. I also want to try and have some insight into what the next part of mum's condition will look like. Noone envisaged the position we'd be in now, but if we had known upfront then me could have been forewarned maybe.

I'm also finding it difficult to know what to do for the best long term as I have a full time job. They suggested today that instead of having a long period of sick leave on my record (heaven forbid), it may be better for me to have it as a mixture of dependency leave, annual leave and unpaid....difference being I'm entitled to full pay on sick which is what they're avoiding. This little bit of compassionate news finished me off today - I know within law, work have to allow you time off in emergencies under dependency however I'm not really in a fit state to work - genuinely stressed and anxious that my mum may die any given day from a coughing fit, or organ failure or just simply not wake up - they've just put me in an awkward situation as now I feel as though if I go on the sick I'm some how misusing the system. Reality, I can't afford to take unpaid leave and if I return to work, mum deteriorates and in effect game over. I can't seem to find an intermediacy that pleases all parties. I even thought about reducing hrs to part time to allow me to travel up Fri - Sun and mum having social care the other days. We're trialling social care now whilst I'm here but in honesty I know its not enough - she needs a live in carer or better still me! who she can boss around to her hearts content, send me up and down the stairs 500 x day because she's forgotten something or to simply make her a cup of tea so that she can preserve all of her energy to attend her art class once a week, where she doesn't have to feel consumed by this illness.

Thank you for reading if you made it this far to what turned out to be my ranty post. x Edwina
Hmm, first of all, do all you can NOT to give up your job entirely, or your 'real life' (eg, if you own your own home etc), even if you put it 'on hold' for, sadly, the duration (ie, until the terminal in your mum's condition comes into final effect.....)(but, do be aware, one of the 'truths' of caring for the elderly is that, to be rather painfully blunt about it, 'they do not die at our convenience')(my poor MIL is nearly 94, and has deep dementia - but she shows no sign of dying yet, and could last years)(Obviously, not the same in the least as your mum, as your mum sounds like she is fully compos mentes which makes a HUGE difference)

You say you can't afford not to have at least sick pay, but why is that? Is it because you have, say, a mortgage to pay on yourn property, plus council taxes etc? If not, then of course you should be living entirely 'free' off your mum while you are caring for her! You should NOT be out of pocket.
Hello Edwina and welcome
Is Mum self funding? That means is she paying for her own social care? If she is, that gives you choice and yes a live in carer sounds best, but then one thing that rings warning bells in my head is how she asks you to do more things than she would ask a carer. Wanting attention and to keep you close are her natural reactions to her situation BUT as you are finding , nice as that is for her, it does not work for you
As you are finding out what is manageable in the short term often does not work for the longer term.
One thing in your favour, and I hate to say it, is that she has terminal diagnosis for only a few years. It would be different to have to think of a solution for 10, 20 or even 30 years.
So only you can decide what is right for you. As an employer myself I can understand them wanting to know your situation and while they may make reasonable adjustments, that has to be reasonable to them as much as to you. No employer I know would grant long term paid leave. Other options could be a sabbatical or part time but for a defined time period.
Perhaps you could think about saving your time and energies for her when she really NEEDS you, rather than just WANTING you. We do have a saying in here that NEEDS trump WANTS which means that as her condition progresses you have to concentrate on meeting her needs ( safety, warmth, food, medication etc) as priority over her wants, (having something unnecessary brought, going to a club, being entertained etc)
I'm glad you are picking up ideas from here early on in your care journey, but see that you are realising there is a massive cost, not just in financial terms, but also in terms of isolation, loss of self worth and reduced re-employability for anyone who takes on sole 24/7 care.
Is there anyone family who can share the load?

Some time ago we had a poster (Theresa I think it was) who had similar thoughts about giving up work to care and did. Luckily her time was short (about 6 months I think) but hard. I'll see if if I can hunt out the thread. I think you would find it interesting