Status
Not open for further replies.

chriss

Active member
Joined
Apr 30, 2010
Messages
77
Diagnosis
01/2009
Country
AU
State
victoria
City
greenvale
Hi, I know that the answer is usually enough to make you comfortable but I wonder how we compare? Last year the nurse said Shane was so ill he only had weeks to live and we were using morphine every 4 hours (he refused syringe driver). Soon we were up to 5 mils a time through the intima ( so administered subcutaneous). Then he stabilised and we went onto 40 mg tablets twice a day which we did for the rest of the year. He was going really well. A few months ago he again had a deterioration and we rapidly over a few weeks jumped to 180 mg sustained release a day plus he sometimes has 10 or 20 mils subcut if he is feeling really breathless (he is also on BiPAP 24/7). Palliative care seem to think it is no big deal compared to the cancer patients but surely when respiratory is involved it is alot. I suppose it doesn't make any difference either way because if you need it then you need it but hate to be just giving more and more, especially since it is me who gives it-makes me feel like I am shortening his life. You know, am trying to make him comfortable but also it is suppressing his respiratory. I suppose I always hope there is a better way. Does anyone else give that much morphine?

Thanks
Chris
 
My wife got Hypnovel (Midazolam) instead of morphine. She got morphine only for pain from time to time. Hypnovel have the same effect on respiration than morphine and it induces respiratory depression. Thing is, anxiety due to respiratory depression is also dangerous and Hypnovel address that symptom. With a carefully managed dose of Hypnovel, the medical team actually bought us more time together. On her first severe respiratory distress, I m sure she would have not made it without hypnovel. I m not a doctor but I assume it must be the same with morphine.

Too much will shorten the life and too few will also shorten the life. Between the two, it is about the medical team’s experience. I would advise to trust them, if they say it is not too much, it is not.
I know by experience it is not that easy to trust the medical team in charge of the life of your loved one. When my wife went into her first severe respiratory distress, she looked so in pain, it was awful to watch. Her doctor told me she looked that way but she was not in pain. I have to confess, I was unable to trust him at this point. When my wife recovered from this, she told us she was really comfortable during the whole respiratory distress and she did not understand why we were so anxious around her.
I can tell you, her medical team gained our trust big time after this.
 
Dear fba75

Many thanks that is really interesting. We have some Midazolam but have really only used it in times of acute anxiety or if secretions are really bad and his respiratory has hence become really restricted and he needs to "slow down"-hope this makes sense. Have found the Midaz tends to knock him out and so we are a little reticent as he sleeps so much after even a small dose. To be honest sometimes have had both the midaz and morph syringes in my hand and it's like well which one do I choose. I agree it is hard to trust the advice and mostly we only see the nurses or nurse practitioners. Also the medication advice is sort of general but when you have something that happens quickly it is hard to know what to do just then. We only see the pall care dr every 6 months and the nurse once a fortnight. If there is a significant issue after hours they can send a nurse briefly but usually there is a wait and so we try to handle things ourselves. Thats the price we pay trying to stay at home instead of going into a hospital/pall care unit. Though the advice to go up from 80 mgs to 180 mgs a day has worked in that he is not having the extreme episodes he was having. It is good to hear that the midaz was so helpful to your wife and is useful to know. Also well put, too much will shorten and too few will also shorten,

Many thanks

Chris
 
My wife needed Midazolam because she had huge anxiety problems. At first, even with Midazolam, she was almost unable to sleep. After her first respiratory distress, she trusted the medical team and things got better on that point. I suppose each PALS is different and the medical team have to come with the proper solution for each individual problem.

We decided not to stay home because of our daughter. My wife was not happy to go in the hospital at first but we did not want to put too much burden on our daughter either. In the palliative care service, we managed to stay with her 24/7 and the team was great.
One night, they had a problem with a nurse and the doctor in charge of the whole service stayed the whole night to replace the nurse because it was too late to find a replacement. This is really the kind of people you want around when things get bad.

You see the palliative care doctor only every 6 month? In this situation, things can change pretty quickly. At least, I hope you can ask him to come if needed.
 
Yes I can see the advantages of being in a palliative unit and sometimes wish I had the help as it all falls on my shoulders and I have teenage children at home as well. I get a few hours of home help a week and the assistance of a pca for about 10 hours but it is not the same as having expert help at hand. It is my husbands wish to stay at home and I have always promised him that he would stay here. I am going to try if I can. Tonight has been a particularly bad night, lots of morphine and midaz. I think we may get the nurses out,

Thanks

Chris
 
Understandable. If he feels comfortable at home it worth the try…
For my wife, the most important thing was she would never be alone. Between a friend of my wife, her sister and me, we managed to stay with her 24/7 at the hospital so it was ok for her.
At home, when things started to get really bad, I was too anxious, our daughter was too anxious and my wife was way too anxious. The choice was easy to make for us.
 
People can build up a tolerance to morphine pretty quickly--which leads to increased dosages. I'm on 3x as much as I was 3 years ago. Is it possible the bi-pap settings need to be adjusted? Or perhaps a cough assist machine?

Sometimes, too, they can use other meds, if one has been on the same one for a long time, sometimes a different narcotic works better for a while.

My thoughts are with you.
 
hi Notme,

I think what is happening is he is getting sputum plugs. Unfortunately his ability to cough is very weak nowadays. I have read on the forums about the cough assist machines but I don't think they are being used here. Would probably help alot. We tried the nebuliser through the T piece attached to the bipap hose and that seems to have helped thin down the "plug". Also have a plan to give breakthrough morphine, wait half an hour then if needed more morphine and a dose of midaz. Sunday he spent all day with the gurgly rattle and we had an extra 60 mils all up of morphine and 10 mils midazoam. Finally moved it. Today he is tired but doing alot better. What we seem to have is this fluctuaton between one day going "normally" so to speak and then the secretions stuck and reducing his breathing drastically. Then the morphine use spirals. It's like one day I am preparing myself for the worst and then the next things look brighter and crisis averted then just when you get lulled into a false sense of security one or two days or even a week later, it all starts again.

Thanks for your support and hope your day is a better one,

Chris
 
Status
Not open for further replies.
Back
Top