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Original poster

Pulmonary Fibrosis

41 replies

scryingeyes · 06/03/2023 09:55

My DM (75) , was diagnosed with PF, scarring of the lungs, in 2019 and she is getting worse now on a monthly basis.
She is on oxygen more or less 24hours a day at home. On level 6 when resting, level 8 while doing anything like getting dressed, going to the toilet.
She's recently had a chest infection that meant she could not stand up without becoming breathless, even with the oxygen.
She's been refused medication to slow down the illness because it's only suitable for those on level 1-2 oxygen. Same goes for lung transplant - she doesn't qualify.

So, is this it for DM?

We're talking about her coming here in the summer for a BBQ (with her being far from any flames) but realistically, she and I knows it will never happen. But planning it and looking forward to it is making her happy so we're discussing having oxygen machine brought here by her supplier so she's not depending on small tanks that don't last long.

How do I support her and my DF when we don't dare mention end of life out loud?

note from MNHQ: please read the OP's latest updates before posting.

OP posts:
Original poster
scryingeyes · 06/03/2023 20:24

Anyone?

OP posts:
bamboonights · 06/03/2023 21:54

I'm so sorry for your situation and have no experience of PF but am dealing with Parkinson's and dementia with one of my parents. What I have established is that their generation (early 80's) have simply not discussed the 'end' other than maybe make a will or organise POA. It's heartbreaking and extremely stressful having to deal with it all but for me personally, Ive found an inner strength. 💐

CoedenNadoligLanOHyd · 06/03/2023 22:01

It sounds really difficult, your poor mum. And so difficult for you too.

There is a really helpful book, for you and for your parents. It's called A Safe Journey Home, by Felicity Warner

I saw it recommended on mumset.

Inkypot · 06/03/2023 22:06

I'm sorry I have no useful answer but I have a close family member with PF as well and I know how hard it is finding others who know what it is, never mind others who understand.
I wish I had an answer for you. I think you planning the bbq and keeping you mum happy is beautiful and cannot be easy on either of you.
I do talk with my family member about end of life occasionally in as lighthearted a way as we can manage. Just little things like checking out we know what their wishes would be etc. I know it is not a nice situation at all and my heart goes out to you and anyone else dealing with PF. It is a cruel condition. Very much love to you and your mum, OP.

MagpieCounting · 06/03/2023 22:18

I'm really sorry about your mum - PF is a brutal disease.
What would happen if you talked to her about end of life care? She's unlikely to be in denial about what her prognosis is so starting the conversation might be something she welcomes.
You could also contact your local hospice or palliative care team to see what support is available. They will talk about end of life care plans and can have those conversations now with your mum and dad, so they are done, rather than being something to deal with if she becomes worse.

It's hard and if she chooses not to discuss it then there is little you can do - but she may welcome the opportunity to share her fears with you or a professional. Best of luck - it's hard.

N0tfinished · 06/03/2023 22:36

Hi. Sorry to hear about your Mum. My DF died with PF in 2019. He died with it, but not necessarily of it... he had an unsafe swallow caused by his other conditions, which caused constant pneumonias. Eventually the antibiotics stopped working. The hospital of course never actually told us when he got to end stage. A PHN noticed it on a form after one of his hospital admissions. The constant admissions for IV Antibiotics & awful experiences in the hospital prompted us to transfer to palliative care.

No one could tell you how your Mums condition will progress. In dads experience, PF progression was fairly slow, and he was very complicated by a degenerative nerve disorder. He was on constant oxygen for a number of years. He had oxygen compressors at home. I always thought that those compressors were so isolating. They made so much noise, he could never follow a conversation & had the TV turned up so high... on top of him being so restricted physically- literally tethered to them.

We definitely tried to get Dad out and about for as long as he was able. It was so important to have something to look forward to & plans to break the humdrum of being an invalid. If it makes your Mum happy, then make plans! The compressors were fairly transportable. We'd unplug one & stick it in the car. He used the bottles for the journey & then we'd plug in the compressor once we arrived. Visiting our homes was really important for him, and it was easier too, as he'd be able to lie down for a rest if he needed to. We didn't have BBQ's as I can't bear them! I generally did a roast joint or turkey with lots of salads.

FWIW, Dad was put on that treatment but we had to stop it after a few months. It had awful side effects that he just couldn't cope with. It gave him awful diarrhea- and as he was wheelchair bound (again not caused by PF, but by his other condition) he'd struggle to make it to the loo in time. It just made his life even more difficult, with no appreciable difference in his lung function. I think he was too advanced when it was introduced.

All the best, sorry I couldn't be more helpful. I think the most important thing is to stay connected & definitely support your parents with the bureaucracy of carers, medically appointments etc. I remember my Mum being very distressed when doctors asked her about resuscitation etc. It was really important to be with her for those hard discussions. Flowers

Original poster
scryingeyes · 07/03/2023 08:57

bamboonights · 06/03/2023 21:54

I'm so sorry for your situation and have no experience of PF but am dealing with Parkinson's and dementia with one of my parents. What I have established is that their generation (early 80's) have simply not discussed the 'end' other than maybe make a will or organise POA. It's heartbreaking and extremely stressful having to deal with it all but for me personally, Ive found an inner strength. 💐

Thank you. I'm struggling as I am not in the same county as them.
Please send some inner strength if you have some to spare Flowers

OP posts:
Original poster
scryingeyes · 07/03/2023 08:57

CoedenNadoligLanOHyd · 06/03/2023 22:01

It sounds really difficult, your poor mum. And so difficult for you too.

There is a really helpful book, for you and for your parents. It's called A Safe Journey Home, by Felicity Warner

I saw it recommended on mumset.

I shall go find this! Thanks

OP posts:
Original poster
scryingeyes · 07/03/2023 09:00

@CoedenNadoligLanOHyd also live the name. Is it down yet ?

OP posts:
Susiesue61 · 07/03/2023 09:03

I would echo the previous comment about palliative care. That’s what we’re here for. We would offer a clinic appt or a visit, to support your mum and yourselves too

Original poster
scryingeyes · 07/03/2023 09:04

Inkypot · 06/03/2023 22:06

I'm sorry I have no useful answer but I have a close family member with PF as well and I know how hard it is finding others who know what it is, never mind others who understand.
I wish I had an answer for you. I think you planning the bbq and keeping you mum happy is beautiful and cannot be easy on either of you.
I do talk with my family member about end of life occasionally in as lighthearted a way as we can manage. Just little things like checking out we know what their wishes would be etc. I know it is not a nice situation at all and my heart goes out to you and anyone else dealing with PF. It is a cruel condition. Very much love to you and your mum, OP.

We do the light-hearted thing too - my DM is the most positive person I know and her spirit is high surprisingly . My DF is and always been a worrier and is very tearful. I think she down plays all of it so not to upset my dad

OP posts:
Alargeoneplease89 · 07/03/2023 09:07

Is there a reason she won't take medication?
Sorry this must be very hard for you all, watching a loved one struggle

Original poster
scryingeyes · 07/03/2023 09:09

MagpieCounting · 06/03/2023 22:18

I'm really sorry about your mum - PF is a brutal disease.
What would happen if you talked to her about end of life care? She's unlikely to be in denial about what her prognosis is so starting the conversation might be something she welcomes.
You could also contact your local hospice or palliative care team to see what support is available. They will talk about end of life care plans and can have those conversations now with your mum and dad, so they are done, rather than being something to deal with if she becomes worse.

It's hard and if she chooses not to discuss it then there is little you can do - but she may welcome the opportunity to share her fears with you or a professional. Best of luck - it's hard.

I can't talk to her when my DF is there because he will get more upset than her. He doesn't leave her side at the moment either bless him .
I think I could approach this if I can get DB to distract DF in the garden.
Thank you

OP posts:
Original poster
scryingeyes · 07/03/2023 09:16

N0tfinished · 06/03/2023 22:36

Hi. Sorry to hear about your Mum. My DF died with PF in 2019. He died with it, but not necessarily of it... he had an unsafe swallow caused by his other conditions, which caused constant pneumonias. Eventually the antibiotics stopped working. The hospital of course never actually told us when he got to end stage. A PHN noticed it on a form after one of his hospital admissions. The constant admissions for IV Antibiotics & awful experiences in the hospital prompted us to transfer to palliative care.

No one could tell you how your Mums condition will progress. In dads experience, PF progression was fairly slow, and he was very complicated by a degenerative nerve disorder. He was on constant oxygen for a number of years. He had oxygen compressors at home. I always thought that those compressors were so isolating. They made so much noise, he could never follow a conversation & had the TV turned up so high... on top of him being so restricted physically- literally tethered to them.

We definitely tried to get Dad out and about for as long as he was able. It was so important to have something to look forward to & plans to break the humdrum of being an invalid. If it makes your Mum happy, then make plans! The compressors were fairly transportable. We'd unplug one & stick it in the car. He used the bottles for the journey & then we'd plug in the compressor once we arrived. Visiting our homes was really important for him, and it was easier too, as he'd be able to lie down for a rest if he needed to. We didn't have BBQ's as I can't bear them! I generally did a roast joint or turkey with lots of salads.

FWIW, Dad was put on that treatment but we had to stop it after a few months. It had awful side effects that he just couldn't cope with. It gave him awful diarrhea- and as he was wheelchair bound (again not caused by PF, but by his other condition) he'd struggle to make it to the loo in time. It just made his life even more difficult, with no appreciable difference in his lung function. I think he was too advanced when it was introduced.

All the best, sorry I couldn't be more helpful. I think the most important thing is to stay connected & definitely support your parents with the bureaucracy of carers, medically appointments etc. I remember my Mum being very distressed when doctors asked her about resuscitation etc. It was really important to be with her for those hard discussions. Flowers

Ow gosh. Your poor dad. DM is in same position also suffering with terrible back pain, arthritis and can't get about with out a chair. She's also stopped medication because of diarrhea and not being able to leave the bathroom.
It's heartbreaking.
But, we try and keep their spirit up with visits and laughter.
Thanks for responding Flowers

OP posts:
sotired2 · 07/03/2023 09:17

My DM died of PF it is not a nice disease with not a lot that can help. We found wit my DM oramorph 10 minutes before any activity (like washing) helped with the breathlessness as it helped relax her. We ended up having carers in twice a day for last year. Last 2 months she hardly moved from sofa once on it in a morning and eventually was in a hospital bed before we got lucky and for the last 2 weeks secured a hospice bed. I was lucky as I can work form home so employer allowed me to work form her house so I could be there to help look after her and giver DF a break. Does she have contact details for the respiratory team at the hospital as I found them really helpful but any help we got was me shouting for.
It sounds cruel and unloving but the last few weeks we all just wished her suffering to end as it was no life.

Original poster
scryingeyes · 07/03/2023 09:21

Susiesue61 · 07/03/2023 09:03

I would echo the previous comment about palliative care. That’s what we’re here for. We would offer a clinic appt or a visit, to support your mum and yourselves too

Thanks. It's difficult to broach the subject as nobody has said how long she has left But I shall start making enquiries x

OP posts:
Original poster
scryingeyes · 07/03/2023 09:29

Alargeoneplease89 · 07/03/2023 09:07

Is there a reason she won't take medication?
Sorry this must be very hard for you all, watching a loved one struggle

She's on so much medication. She's been refused the drugs that could slow the disease down as she's too far gone .
Ither medicine makes her so ill she can't leave the bathroom. She can't walk let alone run for toilet. She has a comode for emergencies.
I'm encouraging her to accept morphine for back pain so she has one less thing to worry about.
My DF is in denial and thinks she has years left and doesn't want her hooked on opioids. I've had words with him.
Thank you for responding, means a lot x

OP posts:
sotired2 · 07/03/2023 09:30

I could never get an answer on how long. Even morning before she died nurse was saying she could have months left and we might have to move her from hospice to a nursing home. I knew she hadn't long left though she had no fight left in her and would say each day when I arrived she had wished she had died in her sleep that night.

Original poster
scryingeyes · 07/03/2023 09:33

sotired2 · 07/03/2023 09:17

My DM died of PF it is not a nice disease with not a lot that can help. We found wit my DM oramorph 10 minutes before any activity (like washing) helped with the breathlessness as it helped relax her. We ended up having carers in twice a day for last year. Last 2 months she hardly moved from sofa once on it in a morning and eventually was in a hospital bed before we got lucky and for the last 2 weeks secured a hospice bed. I was lucky as I can work form home so employer allowed me to work form her house so I could be there to help look after her and giver DF a break. Does she have contact details for the respiratory team at the hospital as I found them really helpful but any help we got was me shouting for.
It sounds cruel and unloving but the last few weeks we all just wished her suffering to end as it was no life.

It's heartbreaking seeing parents suffering and I know how you felt Flowers

She often says to take her to the vet and that if she was a horse, she'd be put down. She says this very tounge in cheek

OP posts:
Original poster
scryingeyes · 07/03/2023 09:37

@sotired2 I know how you feel. I posted here as I couldn't find anything online about how long she could live if currently on level 6/8 on the oxygen machine.
I need to go with them to appointments in future if I'm allowed

OP posts:
sotired2 · 07/03/2023 09:41

There isn't a lot out there re information and a lot does depend on individuals mentality if they have the wish/drive to keep going they will probably keep going longer than someone who has given up. My DM just gave up but I cant blame her for that being stuck inside and struggling to even get on/off a toilet is no life.

Alargeoneplease89 · 07/03/2023 10:12

scryingeyes · 07/03/2023 09:29

She's on so much medication. She's been refused the drugs that could slow the disease down as she's too far gone .
Ither medicine makes her so ill she can't leave the bathroom. She can't walk let alone run for toilet. She has a comode for emergencies.
I'm encouraging her to accept morphine for back pain so she has one less thing to worry about.
My DF is in denial and thinks she has years left and doesn't want her hooked on opioids. I've had words with him.
Thank you for responding, means a lot x

Show quote history

That's very understandable, I can fully sympathise with her as I have been on medication like that and its very degrading, it unfortunate there isn't other treatments. Do they not offer Sildenafil?

My mum had terminal cancer and decided not to go ahead with treatment for the same reason as your mum , she was in her 60s and she had a much nicer 6 months then if she had done the treatment. You are doing the right thing with opioid meds, no point being in pain and she should be enjoying her time and being able to get out more.

It must be hard for your DF, has she got palliative care in place? If so maybe the healthcare team can explain that its more beneficial to have pain relief.

Big hugs to you. X

N0tfinished · 07/03/2023 13:14

@scryingeyes I just wanted to underline what the other posters mentioned about Palliative care. Being referred to Palliative services doesn't mean the end is imminent. It just means that treatment is more about comfort rather than cure. She may be on medications that don't suit her anymore. Anyone who's been involved in caring knows that they can end up on huge amounts of medication, and it's helpful to have them all reviewed. Palliative doctors did that for us. They also provided different equipment & therapies we couldn't have gotten in the hospital services. The nurses were a tremendous support.

My mum was a fantastic carer to my dad but I remember it being hard for her to adjust from trying to 'cure' him - (trying to get him to sit out, eat, even use those little pedal exercise machines) when he was so weak that all he wanted was to stay in bed. I saw in your last post about your own DF's reluctance for your mum to take oromorph. We had the same thing. It's hard for them to face the next stage, you can understand why they would be in denial.

All the very best to you & your lovely parents xx

Original poster
scryingeyes · 07/03/2023 18:23

@NN0tfinished thanks so much. I will look for into this x

OP posts:
CalmConfident · 07/03/2023 18:29

My FIL has PF too…he has not proceeded with the life-extending medication as it had too many side effects. He is being stoic, no oxygen yet, but is being mater of fact about progression :(