Interpreting the medical specialists

[Aussiemndcarer]

Help!
In the last week we have had visits by our GP, hospice nurse and palliative care specialist. ( she's head of palliative care in our large regional hospital that is 1 hour away.)
We do feel very special that we have so many people helping us!
The problem is, all of them finally get around to telling us that " death can creep up quickly....breathing can just stop......anytime...." This is usually after we have been discussing all the other stuff about end of life etc.
I just can't stop thinking that they are getting more concerned about my PALS.
But, we feel fine.( or as fine as can be with this bloody disease)
There are no headaches, fuzziness, confusion or signs of CO2 build up.
We do have to use the breathing machines 19 out of 24 hours now.
We have been using NIV since Jan 2015.
We have also noticed more swelling of hands and feet . My PALS hand movements have almost all gone now too. On the positive side, we can still chew,gargle,and talk.
We have been concentrating so hard on living that I suspect that the end is close.
How do I know?
I just really am reaching out for others experiences with respiratory failure.
I think that I will read, comprehend and then tuck that away and get on with enjoying the day.
I was left totally exhausted after the last visit yesterday .emotions........

 

[Atsugi]

I've never heard of any way to know if the end is near, until it is very near. Even then, it still never seems predictable.

My only advice is to take each day one at a time. Wake up, see what you've got, and then try to make the best of it.

 

[lgelb]

BiPAP alone (no sedating drugs) controlled my husband's air hunger till a week before his death. He used BiPAP from most-of-the-time to 24/7 for a year, before that PAP for many pre and post-ALS years.

It's true that respiratory insufficiency can come on suddenly, but there will likely be gradual progression to more BiPAP hours and an almost or complete inability to go without it, before then. But some deaths here have been sudden and before that point.

Nutrition is a key, no doubt, as is stress, sleep and pain. All you can do is live life together, as you have said, under a sword perhaps, but in large part out of your hands. What you do with each day is much more in your control.

Best,
Laurie

 

[gooseberry]

Steve ate less and less as his swallowing muscles went but gained weight. In 3 months time he had very big losses. His kidneys and liver werent working properly, and he used his bipap 24/7 unless he was rrying to walk somewhere...not advised but he was stubborn. A fall occurred when he was alone and he couldnt get up. Because his breathing had declined so much(he couldnt hold a conversation because of breathing difficulty) he coded.

You ask how you can tell.....I am not sure. I knew Steve was progressing rapidly, but when I left for work, I never imagined it would be the day.

 

[affected]

It sounds like they are trying to prepare you for the unexpected and unpredictable.
That's what this disease is for sure.

Some PALS literally just stop breathing without any sign that we typically think means 'the end'. Others struggle on so long seemingly at 'the end' we can't believe it. Then some take an obvious turn for the worse and follow a fairly predictable path.

I know this to be true here in Australia - some CALS report a lot of anger that they didn't realise the end was nigh. Some are not well prepared and panic and call an ambulance, which is not a good thing to do.

So your support team are just trying to have you well prepared by the sounds of this.

Honestly I think it's good. When my Chris went into actively dying I was very well prepared by MND NSW and pall care. For us it was something I recognised, and he passed within 4 days of my recognition that he was at the end.

Do keep living the way you have been, but do ensure your advanced health care directive is clear and you both know what he wants for the end of life. I think that makes living each day easier to a large degree xx

 

[SKlocinski]

When Tom began having hallucinations I thought that the end might be near. I was still surprised the day that it happened because I had this picture in my head that he would be having difficulty breathing and he would be in bed and hospice would be giving him morphine. While he was having a "bad day" that day, he was still able to get up and move around and even parked the wheel chair when the VA delivered it. That evening he just went to sleep in his recliner and didn't wake up...so even if you think the end may be near it can still sneak up on you.