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mellorama

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Jan 3, 2010
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Loved one DX
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CA
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Glendale
Hi all... First I'm sending lots of positive energy to Beth...

So a couple of questions, or maybe just a shoulder, from anyone who is at this stage or has been through it. My mom is on the BiPAP almost 24/7 now. Clinic has basically said to her it is just a matter of time :( But she is still mobile and in decent physical shape, except for her breathing and swallowing. They did not even do her numbers last time, and said her cough is non-existent. Pulmonologist said eventually the secretions will build up (that was how it would progress) and he thought her respiratory system was too weak for the cough assist to be of much use. All her doctors say we could call in hospice but the local hospice seems very focussed on dying. They talked and offered to prescribe morphine on first visit. Neuro and Pulmon were clear that morphine would hasten death. I want her to feel safe and in good hands but she wants to still focus on life, not death.

So hard to know where she is in her progression. One Dr. says within 6 months, one says he would not put a time frame on it... She is clear today that she does not want the trache. She is on Peg already. As a family, we are just not sure where we are in this journey. Maybe we will never know, but any?

Thanks to all.
 
Meant to say that if anyone would like to share their story or the story of their family, I would love to hear and to feel surrounded by those who know and have traveled this path as well.
 
As one who chose to trache and vent because I could still function almost normally except for me breathing I don't know what to say if she refuses to consider one. My heart goes out to you!

You said she still wants to focus on life, not death so why is she refusing a trache and vent?

As you already know there is no way to tell what her time frame might be.
 
Joel, it is a good question and we are still discussing it, so I always try to say "today that is her choice." I think she is scared (understandably) and we all are scared of the choices on both sides. But we know we need to talk about them and we try to. Things seem to be happening really fast (and then sometimes it seems like time is standing still) and each day seems to being a new symptom or new issue.

I have read and shared your website with her and thank you for your consistent voice for making the choice for a trache.
 
Melissa, such heartbreaking information. My issue is WHY didn't they "do her numbers"? That is what they are paid to do! I sometimes feel that we get brushed aside and we are not given the quality of care that we deserve and that we PAY them to give us! That being said, I agree with your Mom. Live every moment and focus on life :] That doesn't imply to me that we have to take all the measures to prolong life. Web is currently adament about NO TRACH. That is his choice and right. He is unable to imagine his life continuing without being able to participate physically and he feels that he does not want to live if he can no longer move and interact. :[ Actually, he made some noises about being unhappy with the PEG ie "I wish that I had never let you talk me into this." I sat him down and straightened that our ASAP. I DID NOT talk him into it. I gave him all the information and he made his personal decision and I supported him PERIOD! I see the PEG as a comfort measure. Many difficult moments and decisons on this journey. hugs to you and your Momma.
 
My mom is also on bipap 24/7, her new # at clinic was 19. She does not want peg or vent and we are also trying to figure out when to call hospice. Your mom still wants to live and can move, mine is completely paralyzed but can still speak and swallow. I just keep hearing that the course is different for everyone. I hate this guessing game.
For my sisters and i the main thing is getting her anything she desires and just being with her as much as we can.
I will be thinking of you.... mom's are so special and you sound like a very loving daughter.
Barbara
 
Meant to say that if anyone would like to share their story or the story of their family, I would love to hear and to feel surrounded by those who know and have traveled this path as well.

Oh and i wanted to add to my other post, my moms diagnosed was 10/08. I just always look at the dates so i thought you might have wondered.
barbarahttps://www.alsforums.com/forum/images/icons/icon12.gif
 
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