Status
Not open for further replies.

Aussiemndcarer

Distinguished member
Forum Supporter
Joined
Jan 28, 2016
Messages
198
Reason
Lost a loved one
Diagnosis
09/2014
Country
AUS
State
Wa
City
Kendenup
Can someone help please? My pal is struggling with his breathing more and more. His neurologist said that he could just choose to use his vpap machine more and more or he could take morphine and keep his use of the vpap machine to evenings and his 4 hour rest during the day.
We are hesitant to use morphine as it seems to be the beginning of the last bit! We have been carrying around a supply of morphine for 10 months now . Can somebody share with me,their experience with morphine?
My pal does use air at times when he is sitting watching tv and also when we travel .
He cannot be on his back without his machine on either. He has been like this for easily 10 months now.
 
When I was in your position, I was told to use morphine. I insisted on the doc telling me personally that it was the right thing to do. If I was going to kill my wife, I wanted to know about it!

Turns out that the small dose of morphine will open up the lungs, making it easier to breathe. Works in just a minute or two.
 
Small doses of frequent morphine can be incredible for a PALS (PALS is person with ALS so singular).

Morphine doesn't signal the end at all, that is a misconception, just like registering with palliative care is misconceived to mean it's the end.

What happens is a very low dose (so they may give him somewhere between 1-5mg) will relax the muscles in the airways just a little, reduce apprehension just a little (any PALS having trouble breathing will be a little tense) and so breathing becomes a little easier.

Are you registered with palliative care?
If not, I strongly recommend you do so asap. It will make a huge difference if he were to suddenly pass away at home.

He is also going to need his vpap more and more, but if he wants to avoid using it all the time for a bit longer, then he can try this. He will not become addicted if he tries low dose morphine for a few days or a week, so it's a safe thing to try and see what works best for him.
 
Hi Aussie, thanks for sharing, my BJ as yet dosnt have any breathing issues so I can't offer any advise, but by sharing it has now alerted me to the problem and now I know that low dose morphine is going to a help I won't be so concerned, so thanks for asking the question.
Love Gem
 
Gem and all our Australia CALS, I would just again strongly recommend you register with palliative care straight up.

You will have access to help from them, but it's really important that if you PALS suddenly passes at home the whole thing is totally simple. Otherwise, it can become a coroners case which would be very traumatic.
 
Thanks ,
We were advised to get in touch with our palliative care team in January by our respiratory dr and then our neurologist. We came away devastated and a little defiant!
We didn't think that we needed to see palliative care just yet,but we do take medical advice quite seriously ( must be old school) . We went home and had an appointment with palliative care. We now have a palliative care nurse visit us about once every 6 weeks. She is just getting to know us,and can offer advice. She hasn't been for ages.
We also saw a palliative care specialist first up. She congratulated us for not crying!! As wonderful as she was,we now understand the meaning of palliative. " to treat & keep comfortable" ( simple description) so it is still strange for us,as it is for all of us to know that this disease has no known fix! We live in hope.
 
Thanks Tillie.I just needed to hear from those who have travelled this road! As the medical folk around here haven't had many people with ALS/MND and respiratory onset. I guess I always am thinking of what is best for my pals,and now I feel a little more confident with opening that bottle! Of course my pals has to want to take it ,and he has only once said, " tomorrow, I think we will try it" and tomorrow came & we had a great day with no need. Very early on ,he tried 1 ml just to see his reaction and there wasn't any. Thanks for being helpful.
 
Hi Aussie, thanks for sharing, my BJ as yet dosnt have any breathing issues so I can't offer any advise, but by sharing it has now alerted me to the problem and now I know that low dose morphine is going to a help I won't be so concerned, so thanks for asking the question.
Love Gem
Hello Gem.
Jim had very early respiratory onset, but he has very little bulbar symptoms,thank heavens ,as he can still lift his wine glass up! Ha, ha.
Although ,lately his limbs are so much weaker. Legs are well and truly useless,and his left arm ,and hand aren't good. One day we will know why the symptoms are different for different people I guess. We are very well equipped with machines. A stellar for night,a back up machine that is more portable for the car even with battery jump leads in case we have engine problems and now we have another machine on the back of an electric chair. The team at Sir Charles Gardner hosp sleep clinic have been fantastic. ( just in case you need them & I hope you don't!)
 
My PALS tired the morphine early on, it worked really well, but he got constipated. Really bad. We had to disimpact him. Now he won't go near it. We ask him every week when his hospice nurse is here and he say NO Way. So he just wears his bipap all day. I just want you to beware of that and take preventative measures with Senna or other stool softener. If we had done that he could be more comfortable now. WE have tried to explain this and he won't have it.
 
Good point, thanks Dizmom!

Very low doses of morphine are unlikely to cause much constipation, but we have to remember that PALS are already prone to constipation if their mobility is limited in particular.

From fairly early on my Chris started taking movicol every day, and no matter how well his bowels moved, he started his day with movicol and 500ml water. Some days he would ask for 2 sachets, so I would give even more water. This was many months before he started any morphine or similar.

You sure don't want to replace one problem with another ...
 
Aussie, I don't necessarily see it as a choice between more VPAP hours and morphine. Often his settings can be improved so he is more comfortable during those hours, which will make them less concerning.

Best,
Laurie
 
We had our first home visit with palliative care about 3 months ago, they were lovely and just wanted to start a relationship before we actually need them. BJ has found a solution to constipation, by taking magnesium hydroxide powder mixed into carbonated water, he was taking it for his cramps and worked really well but if drink to many glasses then your on the loo with the squirts.
 
Exactly Gem, you can register with them as soon as diagnosed, but that doesn't mean they take anything over.

I appreciated that their community nurse would phone me every single Monday and ask how things were going. Then I would either book them to come through the week or they would phone back the following Monday.

By the time things were getting bad, we both had a good relationship with them so it made that side of things so easy.

But it's also that legal side of a death at home that also becomes so easy.
It's important to remember that many PALS can simply stop breathing one night at any point in this disease. I don't like to sugar coat things because it's very important to be prepared for what could happen and know when you would call an ambulance and when you would not. Hopefully the RA's from MND<your state> take you through this conversation so you have your mind clear on these things.
 
Gem I'm so glad you are having a great experience with palliative care.

A friend of mine, I met him at a support group, was told he didn't need palliative care and died a week later. His poor wife, it was just awful.

Aussie I'm glad you are old school and have palliative care coming, even if it isn't frequent.
All the best with the morphine.
 
Thank you everybody re morphine questions! I don't know why I am so scared of it? I know it doesn't signify the end but ......
Anyway we did start trying it in the afternoon. Just one small dose. It didn't seem to have much affect. We have noticed though, if my pals is busy with visitors or a new experience,he doesn't get so bothered by his breathing. He has been concentrating so hard and for so long on maintaining breath,that a distraction works just as well.he gets amazingly exhausted,but we just hook him up for a 4 hour session on his breathing machine and he recharges. We have no headaches yet,but I do notice a lot of yawning !
 
Status
Not open for further replies.
Back
Top