Status
Not open for further replies.

Penelope

Member
Joined
Aug 28, 2012
Messages
23
Reason
Lost a loved one
Diagnosis
08/2012
Country
AU
State
VIC
City
Melbourne
hello all

Coming in as I am frightened tonight.

Dad had been chugging along ok for quite awhile (2-3 years) he has bulbar onset but while his speech went long ago he was mostly ok until about 6 months ago his neck muscles weakened and in the last two months there has been a steady decline in his hands.

He has been peg fed for quite a long time and had nothing by mouth for a couple of months.

He gargles to try and trigger a cough which is not ideal but they did not want to put him on cough assist.

In the last week he had had a breathless episode or two. He went into hospital for monitoring and to give my mum some respite. He has been in a week the day he went in he had a breathless Ep and now today around noon as well. When Mum went in in the afternoon she noticed he had a temp they have put him on intravenous antibiotics and oxygen as well as 3 hourly morphine and oxygen. It was the first time I had seen him in hospital and with the mask he just looked so frail and sick it took all my strength not to lose it then and there.

The Dr has gone from saying the temp could be from a mucus plug or a bowel impact ion and now a chest infection.

I know chest infections are usually what gets MND sufferers in the end.

He is 82 but his heart is strong. He has only recently started having breathless episodes.

I don't know what I want to hear or even what I am asking but what are the chances of him surviving this infection? The Dr said he can give no guarantee of course but do patients at this stage ever fight off an infection or should I be preparing myself?

I am numb and cannot believe it is happening.

So sorry for the essay thank you for reading this far.
 
Penelope I am sorry. This is so hard I know. It sounds like you should prepare yourself yes but he could possibly pull out of it depending on how weak/ strong his underlying respiratory status is. It has happened. The doctor could tell you how likely they think it is
I think it will be obvious to you in the next couple of days if he is turning around. Does he have a do not resuscitate do not intubate order? I hope his wishes are clear
Sending you a virtual hug
 
Thanks Nikki

Yes he has a DNR all wishes sorted. The DR said 1-2 days but anything could happen overnight. I am just shocked 3 weeks ago he was fine (within the new boundaries) I can't believe it would happen so quick
 
I am so sorry. It does turn quickly sometimes. My mom went fast in the end too. Just concentrate on being there for him and your mom. Being able to do that will comfort you later. We are supporting you virtually
 
Penelope, may God be with you and your Dad at this frightening time for you all.
My heart goes out to you, Janelle x
 
>Just concentrate on being there for him and your mom. Being able to do that will comfort you later. We are supporting you virtually

Ditto that!
 
So sorry Penelope, for some reason there are a bunch of Australian PALS that I know that have developed chest infections and pneumonia in the last 4 -5 days.

This is tough I do understand. He may well rally through this but you are also trying to prepare that he may not as well.

If you can put your fears aside and concentrate on being with him and showing your love, it is truly the best thing. No matter how much morphine he will know you are with him and he will feel that love. If he rallies, you gave him the best support this way. If he does not, then you will help give him a peaceful passing and you will receive comfort from this.

Huge hugs to you, please do keep us updated. MND SUCKS
 
Thank you all so much it means a great deal to have this support. You are very kind.

My sister called the hospital this morning temp is down and he had a "comfortable" night I will be speaking to Mum in an hour once I get the kids off to school.

I hope he is able to return home but I know this may not be the case. It just all happened so suddenly it was supposed to be for respite and now we are facing losing him.

I am saddened to hear another 5 Aussie PALS are also in this situation and my love and thoughts are with them and their families.
 
Hi Penelope, good to hear that Dad's temp is down and he had a comfortable night, sending you a big hug and will keep you and your family in my prayers.
Love Gem
 
Hope this day allowed some quality time with your dad
Take care
 
Hugs from up north Penelope xx
 
So sorry you are going through this. It's my biggest fear (my dad also has bulbar onset). I hope he continues to be comfortable and stabilize. THoughts are with you!
 
I'm new to this site- my dad also has a ALS, but not bulbar. He does have breathlessness- so I can relate. I hope you get through his rough spot- and get yourself together so that you will know how best to react next time. Wishing you well
 
Hi

Things are not good and it would appear we are in the final days.

I had planned to spend the night at the hospital but as he is medicated and we are a ten min drive away we were told to go home.

He is rapidly declined in the last 24 hours. The pace of the decline has staggered me. 10 days ago he was at home walking breathing well except when he exerted himself and sleeping quite well.

They now say he is in respiratory failure and it drops down in stages but never recovers.

He is permanently on the air mask now as he gets blue lips as soon as it is removed. His urine output has decreased and any movement causes anxiety (personal care etc) his morphine has been increased and a catheter ordered. We believe it is hours/days away.

I am not ready it has been so sudden every time the phone rings I jump.

His temp seems to be up again. Could this be from an infection ? Or is a temp rise common when breathing is shallow?

Any experiences with the final days of MND appreciated
 
I am terribly sorry Penelope. Wishing comfort for your dad and all of you
 
Status
Not open for further replies.
Back
Top