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I would also recommend getting a backup suction machine. Mom is on a vent but she can breath on her own for short periods of time and we have an ambu bag if necessary. What I can't imagine is if our suction machine went down for some reason and not being able to suction her out. I guess I would use a straw and do it myself by mouth. Not something I would relish doing but if it would save her life... So that was the first and so far only back up piece of equipment I got, and I got it from a family who's daughter had recently passed away from ALS. They just wanted it to go to good use so they gave it to us with all the attachments. We also leave one at the house and take the back up with us on short trips. I remember when her doctor prescribed it for her. I though we didn't need it. Now we can't live with out. I'm not sure which is more important now....her vent or the suction machine. Seriously GET ONE! :) or two...
 
Kay, I'm so sorry that happened, please give my regards to Web. Linda, you're a brave, wise soul, tender thoughts to you. Irismarie, I WAS drinking a perfect cup of Earl Grey, having pleasant thoughts of you... then I read "twisted his bells"... well, that tea was a lot hotter than I thought it was. :) Don't get me started on the visual imagery! Hee hee

I love you all. Now, considering Joel's close call, And Web's frightening event, I have decided against allowing the technician to increase the electric speed control of my power WC. Moreover, if Lori would happen to read these posts she will have wearing a crash helmet. A safe, safe holiday To All!
--Safety Rat
 
Oh my dear Kay! I can't imagine the horribleness of the whole situation! I'm glad Web was willing to go to the hospital to get suctioned! My heart hurts for you both! Hopefully Web will be able to enjoy sitting out on the porch, listening to the birds, and smelling his coffee instead of drinking it!

You are such a brave, courageous woman! Continued prayers for courage and grace to you my dear friend!
Love,
Melody
 
I'm with Barry. Pretty soon he'll have to stop intake of liquids through his mouth for his benefit and yours.
 
I agree, giving up food and drink is really bad, and coffee, omg, when I couldn't drink my coffee! But you know, you get used to it. It is better than the alternative and after having gone through what he did, he should know that by now. Keeping everythink clear is essential. I might add, Bulbar is the pits. I hate it. But then, I hate any form of this awful disease. But when you have it, you have it. You have to learn to live with it, Not die from it.
NancyS
 
Oh, Kay Marie. There is nothing like having the poo scared out of you, is there? I'm so sorry. God bless us all.
 
Kay Marie, thank you for sharing your hard experience with us. I did not know there is something like home suction. My husband does get bad case of choking/drooling. When it is bad, it is scary to listen to him. I will google info on one. Take care. You are strong and brave.


gertrude
 
I just love you all sooooo much! I love your advice, I love your support and I did want to twist his "bells" off! lolol It was HORRIBLE to go through for both of us. The Blessing is that I now have home suction and HOPEFULLY this experience will be a lesson for other PALS & CALS and they will not have to go through this as we did! That was the horrid part of it for me, I was so f*#&@ng helpless! Yes, Web is a pig headed pragmatic man. :] I can not nor will I attempt to force him to give up what he chooses to do with his life. Yes, I could force him to do what I know to be best but at what cost to him, to us? I can not imagine how this is for him...I can not take anything from him or emotionally force him to do what I would like. He is doing the best that he can. He is living the moments the best that he is able. I can not ask for more than that from him. Yes, his choices sometimes make me sad and puzzled and sometimes even angry. And yet, I can feel at peace because the only thing that I can offer him is unconditional support and love. I give him the facts, I offer up what I would hope that he would choose and then I accept his decision. Even when his choice is not what I would want, I have such respect for him. I am amazed at his daily courage. He is not willing to live his life dependent on machines, dependent on me. I honor and support how he chooses to define the moments of his life. Some days are harder than others! At least the next time that he chokes on that damn cup of coffee I will be able to suction him! If it works, FABULOUS! If it doesn't, at least he got to do what he wanted.. He says to me, "What is the worse thing that can happen if I drink coffee?" He has a point doesn't he! I hope that you will continue to stand by me as I stand by this pig headed pragmatic man-I will need you more in the days ahead and at least I can vent my frustration safely here with all of you. I am not strong nor am I brave, I just am a child of the Prairie who HOWLS at the moon, has a pack of Flying MONKEY'S and Ruby Red Slippers. Hugs, Kay Marie
 
Kay Marie, Bless you, you are so right about letting them decide. It does have to be there decision, even if we may not agree. HUGS Lori
 
Thanks Lori hugs hugs hugs
 
Kay Marie, you have no idea how much he loves you just for letting him chose how he wants to be! I have your back girl! Keep on living one day at a time!
 
Kay Marie, sending lots of love your way. You really understand how he feels and respect him. I love you for that. We all have to decide for ourselves how to do this? No way is easy . no way is the wrong way. Just our own way.... I think very much like Web. I so understand how he feels. Hugs to you both, Linda
 
Kay Marie, Oh my gosh that was scary reading your post, I can't imagine living it. You are one amazing lady! I'm glad all is okay now. I would definitley let him continue to enjoy every moment in life that he can. I am with you 100%.

Take care.
 
"You have to learn to live with it, Not die from it."

Well put, Nancy
 
Zaphoon, I love what you have to say, and I just love your "season opener" avatar. You always crack me up with those! Kay Marie, oh you so have all of us here to lean on! My dad is the same way as your hubby, and its so so hard to not just take over and say, "No, I WANT you to do this" and "What in the hell are you thinking?!" But, it is one of the few things they have left that they have any control over, and we have to respect that. Its really hard especially when you see like JoelC, and Barry and others who have such a great attitude and will do anything they can to adapt and live.....then there are out PALS who are different. In the end, respect = love and that is what matters the most.
Hugs, Kari
 
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