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16% lung capacity

mojo50 profile image
18 Replies

My husband has just had the end of life talk from his GP and Community Matron , i found that hard

when i asked then what time they though he had left they wouldnt commit to it

but have also asked my husband about hospice, where he wants to die etc

the new thing he has been offered is a low dose of morphine

Has anyone else had this treatment or even these sorts of questions and what answers did they get??

thank you

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mojo50 profile image
mojo50
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18 Replies
elian profile image
elian

I'm so sorry to hear your sad news mojo and I'm not able to offer any examples as this is something I've not yet experienced. These 'talks' weren't around when my mother reached the end of her life after suffering emphysema & chronic bronchitis for over 10 years and, thankfully, I'm not at that stage yet.

I wish you both peace of mind and a painless solution.

God bless

x

Jo_BLFHelpline profile image
Jo_BLFHelplineBritish Lung Foundation

Hi mojo50

I am sorry to read of the situation you are both experiencing.

We have experienced respiratory nurses you may be able to advise and support you during this very difficult situation, they can also discuss medications such as morphine and why/how it is used. 03000 030 555.

Very best wishes

Jo

Hi mojo, so sorry for your recent news. It must be very hard for you both. I do hope you will get all the help and advice you need at this time, to help make things as comfortable as can be for your husband and supportive for you both. Please do phone the helpline as Jo has mentioned, you will need good support and guidance through this difficult time.

Sending good wishes to you both.

Zoee

Maz60 profile image
Maz60

Hi Mojo50,

My partner and I have experienced the same 'talk' on June 26 with our consultant, he also prescribed liquid morphine to relieve stress situations. Nick works in an office 4 days a week and we are planning once again to visit Portugal this year by car (with much planning from me) we want to focus ahead and enjoy our time together. Similar lung capacity as your husband. The talks are apparently government lead to benefit the patient in a life treating situation. Our GP said take it lightly and go forward and don't worry.

I hope you find this positive all is not lost.

Good luck and wish you both all the best.

Maz60

mojo50 profile image
mojo50

Thank you all for your replies , i am motivated to call the help line and get some advice but also feeling positive after Maz60 replied

wish my hubbie could still work he has only left the house seven times this year finds driving makes him breathless and holidays he wouldnt contemplate but the advice sounds good to me and will try to look at the positive things left

thank you all again

Maz60 profile image
Maz60

Mojo50,

My man was 70 this year. I know how you are feeling if I can be of any support please let know.

Regards maz60

mojo50 profile image
mojo50 in reply toMaz60

Hi Maz60 my hubbie is 66year of age and i am only 51 we have been married for 29 years and this is the hardest thing i have ever had to face and i have faced a lot

My MS is only mild but holds me back and somethime i find it hard to look after him

our lifes our in four walls watching tv or a dvd, not a good life by any means :-(

Good luck - it is interesting to read that the "talks" are government led! Hope that you get the support you need. Take care. TAD xx

mojo50 profile image
mojo50 in reply to

I will be asking the communtiy matron when she calls today as to if it is just goverment led or otherwise and will post the answer later xx

Hi Mojo,

I am so sorry you have found yourself in this situation. My mum passed away last year - she was 84 and with end stage COPD and can only say as I saw things then. When she started to take the low doses of morphine while in hospital this helped an awful lot, she was calmer so her breathing was a little better but was still very much 'mum'. When she was taken into hospital we had discussions regarding the options available with numerous staff and health professionals. She decided to go to a hospice but for various reasons this wasn't possible. So we found her a nursing home which was wonderful and she was really glad she had agreed to go there instead of the hospice. The care was wonderful, she was cared for and shown a lot of respect, and we found the staff especially supportive of the family as well, especially towards the end. Also found the MacMillan nurses to be excellent - for mum and the family.

Mum wanted to know how much time she had left when she went into the nursing home and like yourself, no specific answer was given. I think this is an impossible question to answer as there are so many variables, age, other existing conditions etc, all I can say is that mum knew herself when the end was near and was very calm about it, possibly due to the morphine.

I would suggest that you talk to as many health professionals and support agencies as you can - each will give you advice and the more advice you get the easier it may be to make decisions.

I wish you both well. x

knitty profile image
knitty

I'm so sorry to hear your sad news.

I lost my dear Mum to Lung Cancer nearly 2 years ago.

Her consultant said she had up to 5 months, but she caught a chest infection so didnt manage that long.

When she was in hospital she had Morphine patches & oral "Morph" & eventually she went to the local hospice.

The atmosphere & staff were so wonderful there, she actually stopped using the patches & was on a lower dose of the oral "Morph" later on.

Our only consolation was that she was out of pain & at rest.

No one & nothing can take you love for each other way. XX

sassy59 profile image
sassy59

Very sad for both of you and your family. Not experienced anything like this myself but do so feel for you. I wish you both well and will keep you in my thoughts and prayers. xxxx

mojo50 profile image
mojo50

Thank you all for your support it means so much to me xx

smokless profile image
smokless in reply tomojo50

I am sorry for you ,there is no easy way too cope with it .I nursed my Mum some 15 years ago she passed at home with cancer ,And I nursed my sister about 4 years ago at home .My mum had been a cancer nurse herself and knew what was what , My sister had brain cancer she was 60 , and believed god would save the day . We had also lost our middle sister 9months before at 57 with Empysema her passing was sudden ,I spent the time with my mum being up beat ,enjoying every min having fun lots of laugthing going over the silly thnigs we had dones , I have many happy good memory of her last few weeks and found that helped me cope later . My sister just did'nt believe she was so unwell and would soon be better so did'nt wont to face anything did'nt put her life in any order .I found this harder as a carer and sister . As TIME is all we have and that is so ,so very inportant ,set goals silly little ones ,or bigger one that are doable with whats going on try not to think about tomorrow , today is here and is good ,enjoy your time togerther if ice cream sounds good for breakfast ,or cornflakes for tea go with it . just really injoy your time togerther and laugh until you tummy hurts , show your love and you will feel better now and it will help later god bless you both prays ongoing

copdliving profile image
copdliving

Mojo

I find this type of thing quite disconcerting. I have 20% lung function and if anyone tried to tell me any of this I think I would get up and punch them in the face. The morphine is how they finish off COPD patients. They increase the dosage week after week until your lungs shut down. I will NEVER give in to this type of treatment. Sorry - I am an American and maybe think differently. .

smokless profile image
smokless in reply tocopdliving

I too have 20% and maybe like me you are coping well this your health ,But I did care for my sister at her home for her last 5weeks in Delaware USA in 2008 and Delaware hospise were on hand to help they were great ,But I found is very scary that they did'nt give any drugs to her , morphine was on her drug list as was loverit injections ,but I was expected to give them too her not the cancer nurse In the Uk Nurse give meds not untrained family , Morphine is only given to help the body cope with the changes .

Hi copdliving - things certainly must be different in America. My mum certainly didn't have her morphine increased - it was only ever enough to stop her agitation. I'm sure that everyone on here would only ever give information that was asked for - some people cope with things better when they know what could happen. Mojo asked specific questions - which people have tried to answer. As far as punching people in the face - I hope you wouldn't literally want to do that!

Dietrech profile image
Dietrech

Saying a prayer for you both now (although I’m not sure anyone is listening!)

These “time to live” predictions are just that-predictions, and people outlive them constantly, so I would try to ignore it, but I would put my affairs in order for peace of mind. I was given two years to live twice after a breast cancer diagnosis, and I’m still here 20 yeas later, although radiotherapy damaged my lungs on top of COPD, so my quality of life hasn’t been good since then. I try to enjoy coffee with friends, (I have to park outside the coffee shop as I can only walk a few yards), my grandson, reading, and my dogs company. I try to live for now without thinking too far ahead.

Much 💕 to you both xxx

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