Auto immune and pulmonary fibrosis

Hi. I am new to this site. I am a carer for my wife who has pulmonary fibrosis caused by autoimmune problems… both early fifties and trying to stay active and hold down a job.
Struggling with thoughts in my head and needing a friend to share confidence with… this whole terminal illness thing messes with your head terribly :worried:

Hi Mike … welcome to an extremely quiet forum as I type.

( Condition mentioned … a link for other readers to explore if needed : Pulmonary Fibrosis: Definition and Patient Education. )

Plenty to explore on here across everything to do with day to day survival / caring in our world , CarerLand.

Juggling work with caring ?

Numerous considerations arise as your starter for ten.

Caring ?

Support ( Or lack thereof ? ) … another bunch of considerations automatically come into play here.
( Needs / carer assessments right through to CHC / NHS Continuing Healthcare … stopping at all stations inbetween. )

Housing … yet another bunch.

Feel free to vent / bounce anything off us.

Very little we haven’t seen or experienced … always a first ?

Welcome to the forum.

I’m not familiar with the illness, but am very familiar with juggling needs and wants, having had in total 10 carees and been disabled myself, and widowed. Here are a few ideas, using my own experiences.

It’s really easy to fall into the trap of always doing what you always used to, but that can be incredibly stressful.
Maybe you could both sit down and write down (or do a computer list) of all the jobs you have to do, and look at what you can change fairly easily.

Gardening? Do away with all the work. Flatten the borders and get a man to mow the lawn.
Ironing? Think about changing the clothes you wear so nothing needs ironing.
Doing dishes? Get a dishwasher?
Housework? Think about getting a cleaner.

Long term is more difficult, and distressing, but the longer you leave it, the more difficult changes will become.
Is your house going to be suitable for your future needs? Shower? Stairs? Downstairs bedroom?

Emotionally it must be difficult. Have you thought about getting counselling for both of you?

Hi Mike
I’m not so good with the emotional side of things, but am sure there’s some support group or charity somewhere for people facing losing someone early.

Where I can be of help, I hope, is on the financial side. It may well worth your wife, and to some extent you, looking at any workplace benefits or personal policies you may have that may pay out in the circumstances. I’m particularly thinking her pension that may pay out early on ill health grounds, or any critcial illness cover, or life assurance or mortgage assurance cover.
If there is, it may give her or both of you the freedom to stop having to work ( or work so much) and spend some quality time doing nice things together while you still can. It might take some of the pressure off.
It’s easy when one is going through something major to forget that such things are there. With such a rare diagnosis it may not be clear in any small print if it covered, but a quick call to the provider will clarify things.

For example a friend of mine has just been through breast cancer. In itself it wasn’t too arduous physically but mortgage cover paid off the mortgage to the tune of £25,000 which meant she could choose whether to return to work or not. She did, for the self esteem and companionship, but the pressure of ‘having to work’ is off.

Of course it might be the normality of work that helps you both, but at least you might have some wider choices

Hope this helps

I second Mrs. A’s advice,
When my brother was diagnosed with terminal cancer when with his wife in Uruguay, I was left to sort out the contents of his house and sell it. I found two policies amongst his chaotic paperwork, and I think the total amount I could claim with a terminal diagnosis was well over £10,000.

The majority of people on this forum wont have been unfortunate enough to encounter pulmonary fibrosis, but many will be all too familiar with the confusing and conflicting emotions brought about by a diagnosis of terminal illness and I’m sure there’ll be lots of support with anything you need to share.

Sadly I do have experience of this devastating disease, having lost my husband to it (his was idiopathic, not auto-immune) last year. (I’m still lurking on the forum as a carer to my elderly father). Whilst you will get lots of support and advice here regarding day to day caring issues/finance/benefits etc, if you need support or advice specific to PF then the British Lung Foundation run a telephone helpline staffed by specialist ILD nurses. Action for Pulmonary Fibrosis also now offer a helpline and they are setting up PF support groups all over the country. Talking to people going through the same things that you and your wife are can help enormously. PF can feel like a very isolating disease, so if there’s a group near to you I would highly recommend a visit.

On a more personal level I would say be kind to yourselves. Take it all one day at a time - make the most of the good days, do as much as you can while you can; accept that there will be bad days and on those days hang on to the hope that tomorrow might be a better day. Try to maintain contact with family and friends, but on your terms - they are unlikely to realise how exhausting PF can be and will need ‘educating’ as to what your wife can cope with. Accept help when it’s offered (and if it’s not offered, but you need it, then ask for it), but bear in mind that people may need telling what you will find most helpful.

Finally, don’t beat yourself up about the thoughts going through your head - I read somewhere that it’s the brain’s way of preparing you to cope with whatever lies ahead.