Recent content by chriss

Hi VL so you "do not choose to govern the circumstances of my husband's death by phone instruction and ....do not choose panic over peace". Well I did not know my husband's death was actually to be that day. We had a whole year of close calls or more really. I get your message and it is a...

Hi Mike and VL, I can see what you are both saying. In our case though we were sort of indirectly told that it was not good to get the ambulance, that it would be invasive etc and the more peaceful pathway was palliative. Also my husband did not want to die in hospital but at home so I wanted...

Well this is hard to write, it was so traumatic..you may not want to read on First probable diagnosis Jan 2009. Weakness started in the hands then arms and his breathing was the first thing I think affected. By April he was on the BiPAP for night use. By April/May 2010 he was on it 24/7 but...

Hi, is the saliva thin or thick? I am wondering if there is alot of thin saliva or is it getting claggy and stuck in his throat and can't quite clear it? There are drugs to dry secretions but if it is getting claggy some of the things we tried were paw paw (papaya) tablets to chew, drinking...

I lost my husband in September. A few weeks later a friend took me away for a few days and I had just one session with this counsellor. She said to me that 'he didn't leave you and you didn't leave him'. She said that you never left each other and that it was only his passing that has...

Hi Roderick, What you wrote struck a chord with me as I was unfairly labelled. Some people called me a very good advocate for Shane but some called me "a very difficult woman" or worse. I had to really push for services in some cases. I am in the process now that Shane has passed in...

A hoist was an essential piece of equipment for us, Cheers Chris

Glad you rang and told the agency and they would do something about it. I had a palliative care (hospice) nurse visit and I told her that my husband had sat up all night long on the side of the bed trying to clear the secretions in his throat, and I had sat with him. I told her because I had...

I am so sorry for your loss. I am sure you being with her all throughout until the end was a big comfort to her. My thoughts are with you and your family Chris

Thankyou everyone for all your kind words and support. Funny thing is, when I think of him now I see his face as it was in the early days. He wore a bipap mask for over a year and a half but I never remember him in it. MISS I like your line how your husband "lived" with ALS. That is what we...

To say that my dear sweet husband Shane Grant passed away September 8th. He was 52 years of age. I want to say thankyou to those people we corresponded with and also thankyou to the administrators for making this site available. We felt so isolated and simply just being able to log in and...

Hi Elizabeth, We are a bit far away for you (not far from Melbourne Airport) but wishing you well with what you are doing. Chris and Shane

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...

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...

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...