end stage copd

[zebby13]

I write on behalf of my elderly dad who at 90 has not long to go. I have done a lot of research,obviously and have asked his doctor for some oral medication to alleviate the blinding panic that sets in when he is having a particularly bad breathless episode. Needless to say,so many doctors and specialist nursing organisations,are not fully aware of what can be offered,and he refused. My dad is not afraid of dying but is terrified of ending his days suffocating. Has anyone else met this kind of difficulty and have any thoughts. I cannot see my dad frightened and anxious at this stage of his life. cheers zebby

[Hungryhorse63]

Oh it makes me go cold thinking about it. I know how that feels. Surely they must be able to give something? Keep on pushing xx So sad kindest wishes xx HH

[zebby13 in reply to Hungryhorse63]

Thanks for that. I am going to try and get a referral to the local hospice and hope the homecare nurses can push for something. zebby

[Hungryhorse63 in reply to zebby13]

I hope so We got my Mum into a Hospice for the last 24 hours after me kicking and screaming non stop. It made one he'll of a difference. Good Luck and God Bless xx HH

[zebby13 in reply to Hungryhorse63]

thanks for the reply and the best wishes,i am a very forceful person,i will prevail (I hope) cheers zebby

[Louisiana]

Bless you, it must be soooo hard for you to watch. I can't give you much advice, but one thing that I wonder is has your Dad actually told the nurses how he feels...that he is not afraid of dying, but is afraid of the breathlessness? My friend's Dad was the same, and he didn't say anything, which meant things got much worse for him. Take care of yourself and go on the site whenever you feel alone or need advice, etc.....have you spoken to a BLF nurse? They are so helpful . All the very best to you and your Dad.

[zebby13 in reply to Louisiana]

thanks for the reply,not only me finding it difficult but my 87 year old mum is having to do such a lot as well. Did you know that she is entitled to a carers allowance of around £60 per week but can't have it as she receives her government pension that she has worked and paid into,but it is deemed a BENEFIT. How awful is that. All the best zebby

[Hidden in reply to zebby13]

Yes but the fact she is entitled to carers allowance even though she can't receive any money can also open up a raft of other benefits. Have a look on direct.gov.uk x

[zebby13 in reply to Hidden]

will do ,thanks zebby

[Magpuss in reply to zebby13]

Although your mother won't be entitled to the carers allowance because she's a pensioner she should still be able to get something called the carers entitlement, and possibly pension credit, if she doesn't already get it. The carers entitlement is less than the carers allowance, but it all helps.

[zebby13 in reply to Magpuss]

Thank you for that i will look into. Cheers zebby

[Louisiana in reply to zebby13]

PLEASE get her to go to Citizens Advice bureau about that....we had all kinds of trouble when my darling Mum was ill and dying. CAB really helped me and told me information that I didn't know about and they helped me fill in forms, etc. DO get your Mum to at lease go and see them once.

[zebby13 in reply to Louisiana]

Hadn't thought of the CAB,thanks for that,I will see if I can get mum to give it a try. Cheers zebby

[Toci]

I have had the opposite problem, having the Oramorph pushed at me when I don't (yet) need it. Talk to his consultant. Try ringing his secretary and asking that he do something to help. He can either prescribe it himself or advise the GP to. Good luck.

[RibvanRey in reply to Toci]

Toci, if you were thinking of Oramorph as a pain med then that may not be why it was offered. Small doses are quite often prescribed to pulmonary patients to calm the gasping because it slows the breathing rate down. Regards, Rib

[Toci in reply to RibvanRey]

It knew it was for my breathing Rib, I thankfully have no pain. But I did not feel I needed it yet as, although I get very breathless at times, I am not gasping, I just sit and recover..

[zebby13]

Thanks ,will try that. cheers zebby

[Toci in reply to zebby13]

I notice you are trying for the Hospice, they should also be able to help you.

[Hidden]

Hi I am so sorry to hear about your poor dad. If he is that severe he should be receiving palliative care. This is a group of medical professionals, doctor, nurse etc. who work together to make him as comfortable as possible. It is patient centered. He might also be offered a spell in a hospice to help get his symptoms under more control or just for a rest. They work very hard to ensure that when he does go he will have a peaceful death with definitely no suffocating.

You need to either ask his doctor or the hospital to arrange it. I hope you can get it sorted for him. Meantime just be there for him and try and keep his spirits up by talking about the past, happy times, family etc. It is very hard by try to stay strong for your father. I have been through this with both my parents. You need to also make sure you look after yourself as well as the stress can play havoc with your health. Take care and keep us updated please. xx

[zebby13 in reply to Hidden]

Thank you for that,i have put on loads of weight as I eat when I am worried so will have to try and do something about that as well.cheers zebby

[Hidden in reply to zebby13]

Whatever helps you cope zebby. Worry about it later. x

[Photogeek in reply to zebby13]

Zee by good luck and I hope your poor Father has

Some help. It's very hard to watch a parent suffering and afraid,

So I hope he gets the help and support he deserves, sometimes

You have to make a fuss and kick and scream. He can't do it

Himself.

Look after yourself too at this stressful, time.

Hannah

[zebby13 in reply to Photogeek]

thanks,will try but parents tend to take up all my me time at the moment,but are worth it. Cheers zebby

[Photogeek in reply to Hidden]

Hi CAL what a lovely caring helpful reply, this would help anyone

At end stage illness, my niece had Lung Cancer at 40 and she died very

Peacefully in the hospice, they were fantastic.

Hannah

[Hidden in reply to Hidden]

You are so helpful cal2, I really enjoy reading what you have to say xx

[Hidden in reply to Hidden]

Aw bless you kiwichick. It's nice to know someone appreciates me! xx

[hufferpuffer]

So sorry your poor Dad is suffering like this, my Mum was the same at 70. When your organs aren't receiving enough oxygen your brain produces a trigger which brings on panic attacks, so difficult to reach a person going through an attack it's exhausting.

I hope you can get some help soon.

huff xxx

[zebby13 in reply to hufferpuffer]

Thank you for your support,will keep at it. zebby

[sassy59]

That must be such a terrible thing for anyone to go through zebby, let alone your poor dear dad at 90. Something can be done surely and I would push as hard as you can as that cannot be right.

I do wish you and your dad good treatment from the GP. He certainly deserves to be helped. A hospice could be the best way forward.

xxx

[zebby13 in reply to sassy59]

Thanks,have made an apt to see the GP to try to understand his point of view and to give me the hospice referral. Cheers zebby

[Hidden]

All the best zebby, keep pushing until you get what you need for your Dad and you. You have a lot to cope with at the moment, please take care of yourself xx

[zebby13 in reply to Hidden]

thank you so much zebby x

[knitter]

Dear zebby, I do feel for you and your father....is he able to try the pursed lip breathing technique when he gets very breathless and panicky...it can help calm and gives a focus. Also a small hand held battery fan just aimed near the face can help. The McMillan nurses have a very good booklet on coping with breathlessness.

But I would try again for some medication to help him.

Does either he or your mother claim Attendance Allowance....it is not means tested and can be a great help to pay for things to make life easier.

Take care

[zebby13 in reply to knitter]

thank you for your reply,dad gets attendance allowance,finacially things are ok. Fan seems to be worth a try. cheers zebby

[Seaelf]

Zebby

I have read that in end stage and palliative care morphine reduces

the actual perception of breathlessness effectively. That may well be a good source of comfort. Additionally if like hufferpuffer said the organs have lack of oxygen and provoke panic

Perhaps additional oxygen would help . In any case i wish you courage.

Also a fan on the face reduces

perception of breathlessness.

[zebby13 in reply to Seaelf]

thank you,dad is on oxygen but it makes little difference,i will try the fan. cheers zebby

[Seaelf in reply to zebby13]

Your welcome . Do see about the morphine too.

[Hidden in reply to Seaelf]

I agree hopeup. My mum was on a syringe driver for the last 2 days of her life. She didn't suffer and passed peacefully. I am so grateful for that. x

[zebby13 in reply to Hidden]

I will make a note of a syringe driver,the more info I have the less the gp can weasel out. Thanks,zebby x

[pattylusk in reply to Seaelf]

I already use a wet face mask or wet scarf. I do get very breathless but so far no panic attacks. I do know the difference. I had panic attacks when i was young due to a life crisis.

[zebby13 in reply to pattylusk]

Thanks for that advice,i will get mum to give it a go when dad gets in a state. All the best zebby x

[camping-girl]

McMillan nurses helped my Dad ,when he was at end stage COPD. They stayed overnight so Mam could actually go upstairs to bed and get some well earned rest knowing Dad was being cared for, and they kept the GP informed with any meds they thought were needed. The last week he was very comfortable and the end was very peaceful, no gasping for breath. Seems to me you have a very unsympathetic GP Zebby, maybe a different GP in the practice? Hope you get the help you and your Dad need

xx

[zebby13 in reply to camping-girl]

thank you,i had not thought about macmillan,I will look into it,my hope to is that dads passing is peaceful when the time comes. zebby

[cofdrop-UK]

Hi zebby

Good advice from your new friends above. Just wanted to say hello, welcome and hope you and your dear Dad get the support and peace.

love cx

[zebby13 in reply to cofdrop-UK]

Thank you for that,all the messages have been very helpful,loving and supportive. I am grateful. zebby

[RibvanRey]

I know exactly what you mean Zeeby. I have this identical fear. I have had a similar conversation with my GP. Not really bother about it even being oral as my wife is a nurse but the GP was adamant that he would not prescribe. Nothing about there being no such medication though. Regards, Rib

[zebby13 in reply to RibvanRey]

The problem is just having a GP and also the COPD nurse not agreeing with giving morphine in any form. They are all for breathing techiques and meditation. My dad is 91!!!!!! I have done loads of research and I will make such a nuisance of myself that I am sure they will cave. cheers zebby

[Seaelf in reply to zebby13]

Awful -them!

Wonderful you.

[zebby13 in reply to Seaelf]

Thank you for that ,zebby x

[piggi]

O Zeeby I'm sorry I have nothing to suggest - just wanted to send you good wishes and hopes and love xx piggi

[zebby13]

Thank you so much zebby x

[mickyjoan4]

I hate that we have to fight all the time for things, your poor dad, thank goodness he has you to fight for him but still you shouldn't have to either, what is the matter with some doctors, what difference does it make to them, arghhh I get so angry, I wish your dad and mum and you peace and love x

[zebby13]

Thank you ,good job I like a nice fight, zebby x

[mskpjb]

So sorry your dad is feeling so bad. Surely they`ll supply him with oxygen and a mask to help him . I know oxygen is primarily to protect the organs but in hospital a mask and oxygen definitely help breathlessness. Hope you get some help, Sheila x

[zebby13 in reply to mskpjb]

Thanks ,I am beginning to think the indignity of it all will finish him off first, but he has had a good day today,i have had to go back home for a few weeks,so hope it lasts for a while. cheers zebby x

[camping-girl]

I have to correct myself, it wasn't McMillan nurses we had for Dad, it was Marie Curie

xxx

[zebby13 in reply to camping-girl]

Crossed out one and added the other in my little "dads medical book" thanks zebby x

[camping-girl]

Is your Daddy on oxygen Zeb?

I know everyone is different however I'm so worried about you & your Dad! Going back to my Dad, at home he had oxygen, nebuliser and a mattress (can't remember the name) so he didn't get bed sores and he had these for over a year!

Still think it's his Gp practice letting him down.

xxx

[zebby13 in reply to camping-girl]

Hi, yes dad is on oxygen,to keep his organs going..He has a breathless attack about twice a day when he has to move about for some reason. The problem is once he has an attack he is in such a state that he is terrified each time it happens and thus it goes from bad to worse. He has everything available except the medication to take the anxiety away and stop the panic. That is the small dose morphine. But the doc says no. I will get it though my hook or by crook,failing that I will be making him special brownie cakes if you get my meaning. All the best zebby x

[camping-girl in reply to zebby13]

Hope you get it! Seems like he needs it! Cake is a good idea if they won't help you,

Kay,

xx

[peege in reply to zebby13]

I'm so sorry for you and especially your poor dad.

The problem is that morphine patches and the much weaker, liquid Oramorph are controlled drugs. They have a street value, even Oramorph. Since Harold Shipman GPs are so careful.

A close friends father has a stash of Oramorph left over from his wife's meds. When I was clearing out their meds cupboard (my goodness some tablets were dated 2008) I asked him if I could take the bottles of Ora to the pharmacy. He said "er, no thank you, I'm saving them for a rainy day". i carefully wiped my prints off the bottles!

The fan really works. There are nerve endings in the face which are connected to the lungs.

I learnt that on PR from the Respiratory nurse. I didn't really believe it until a 3 year old in my charge had an asthma attack from the fumes on a busy London street. I grabbed a newspaper and fanned her face madly for a few moments and it worked! It was amazing.

All the best to him, I hope the call to his consultant comes up trumps.

[zebby13 in reply to peege]

Thank you for all the info. It does seem to be dependant GP. My own (too far away for my dad) prescribe it as a matter of course. I will definitely get him a little hand held fan. Cheers zebby xx