It's Progressing So Fast!
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anneinma
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I debated about bringing this up today and think if I can just help one person it will be OK.
When my DH was diagnosed he very bravely wanted to put his affairs in order. We discussed his wishes (no respirator, maybe a feeding tube). We did the proper legal work, wills, living will, DNR, we met with the priest and the funeral parlor. We discussed the actual funeral. These are very difficult subjects under any circumstances but I think they would be impossible for someone to handle if your loved one passes suddenly as my DH did or if they have respiratory failure and you don't know their wishes. It brought my husband peace knowing they were in place.
I will be forever thankful to my husband for his courage and unselfishness at being able to put these things in order before he passed.
There was something that happened after he passed and I called the caterer. She said, "you probably want paper plates, china will be more expensive". While we (DH and I) did not discuss paper or china I got a VERY clear message that my husband wanted china. That would be his way and I knew that message came from him!
When my DH was diagnosed he very bravely wanted to put his affairs in order. We discussed his wishes (no respirator, maybe a feeding tube). We did the proper legal work, wills, living will, DNR, we met with the priest and the funeral parlor. We discussed the actual funeral. These are very difficult subjects under any circumstances but I think they would be impossible for someone to handle if your loved one passes suddenly as my DH did or if they have respiratory failure and you don't know their wishes. It brought my husband peace knowing they were in place.
I will be forever thankful to my husband for his courage and unselfishness at being able to put these things in order before he passed.
There was something that happened after he passed and I called the caterer. She said, "you probably want paper plates, china will be more expensive". While we (DH and I) did not discuss paper or china I got a VERY clear message that my husband wanted china. That would be his way and I knew that message came from him!
fiddleplayer51
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Anne,
What you said in your post about your husband not wanting to have lived with the disease progressing further is essentially what I was saying in my reply to Jackie. I think some PALS are just that way, and I as his CALS see the sadness creeping into his eyes as he says goodbye little by little to the things he loved to do. I don't want him to linger with multiple deficits filled with sadness locked in a body that no longer functions. I will miss him so much when he's gone, but when that time comes, I know that my comfort will be that he is no longer suffering and is at peace.
Like your husband, he has put everything in order including writing his obituary. He has made it as easy as possible for both of us and I am so grateful to him. I can't imagine dealing with some of those things with heavy sorrow after he's gone.
Peace to you, Anne. Thanks for sharing, and I hope you and your daughter are holding up okay.
All good wishes,
Jane
What you said in your post about your husband not wanting to have lived with the disease progressing further is essentially what I was saying in my reply to Jackie. I think some PALS are just that way, and I as his CALS see the sadness creeping into his eyes as he says goodbye little by little to the things he loved to do. I don't want him to linger with multiple deficits filled with sadness locked in a body that no longer functions. I will miss him so much when he's gone, but when that time comes, I know that my comfort will be that he is no longer suffering and is at peace.
Like your husband, he has put everything in order including writing his obituary. He has made it as easy as possible for both of us and I am so grateful to him. I can't imagine dealing with some of those things with heavy sorrow after he's gone.
Peace to you, Anne. Thanks for sharing, and I hope you and your daughter are holding up okay.
All good wishes,
Jane
whimsy_1971
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Todays been a rough day for me. David went to the Als clinic visit yesterday. He has not been eating or drinking well. He cant use his legs any longer or his hands. He is chocking on his siliva and having a hard time breathing and in a lot of pain due to his back and shoulders, and His speech is all but gone now. This has all occurred over the past few weeks.
The clinic by the way is absolutley wonderful, but I left there w/ so much sorrow and pain in my heart for my husband. Thye suggested a feeding tube, a Bipap, a assist cough machine, medication to help w/ his saliva, and a suction machine. n
It kind of threw me for a loup. Dave is so sad right now. He cant even look me in the eyes anymore.
why do's this have to be such a horrible thing for them and us? I broke down at work today. I just lost it. They told me that they were proud of me for doing what I have so far, but that I needed to look into a assisting living place for him cause they have seen the toll it has done to me with little or no help and working full time. I dont know what to do. I m just trying to take my time. Things are a little ove whelming right now, and going so fast. i just cant think straight.
didnt mean to take over the thread.
The clinic by the way is absolutley wonderful, but I left there w/ so much sorrow and pain in my heart for my husband. Thye suggested a feeding tube, a Bipap, a assist cough machine, medication to help w/ his saliva, and a suction machine. n
It kind of threw me for a loup. Dave is so sad right now. He cant even look me in the eyes anymore.
why do's this have to be such a horrible thing for them and us? I broke down at work today. I just lost it. They told me that they were proud of me for doing what I have so far, but that I needed to look into a assisting living place for him cause they have seen the toll it has done to me with little or no help and working full time. I dont know what to do. I m just trying to take my time. Things are a little ove whelming right now, and going so fast. i just cant think straight.
didnt mean to take over the thread.
anneinma
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Oh Whimsy,
I wish I lived closer so I could help. Have you looked into Hospice?
I don't know what else to say. The Bipap did help my husband a lot. He used it all night long and it helped him to cope during the day.
Anne
I wish I lived closer so I could help. Have you looked into Hospice?
I don't know what else to say. The Bipap did help my husband a lot. He used it all night long and it helped him to cope during the day.
Anne
sharonca
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I'm so sorry to hear what is happening. I can only suggest also that Hospice can be a wonderful help. Both of my recent experiences with the service were wonderful - so helpful and kind.
Sharonca
Sharonca
fiddleplayer51
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Christy,
I was reading over some of your posts. July has been such a bad month for you. That sadness you said your husband has is the kind of sadness I see creeping into my PALS' eyes like I mentioned in the post above.
I know you must be exhausted, Christy. I'm so sorry.
Just as others have said, you really need to investigate having hospice help. It sounds as if you're truly to the point of not being able to hold up managing alone. You've got to think of yourself, too, and line up some help.
I just hate that this is happening to you. Please see what you can find out about hospice. What about FMLA?
Good luck to you, Christy. Know that we all are thinking about you and hoping for some solutions for you.
Jane
I was reading over some of your posts. July has been such a bad month for you. That sadness you said your husband has is the kind of sadness I see creeping into my PALS' eyes like I mentioned in the post above.
I know you must be exhausted, Christy. I'm so sorry.
Just as others have said, you really need to investigate having hospice help. It sounds as if you're truly to the point of not being able to hold up managing alone. You've got to think of yourself, too, and line up some help.
I just hate that this is happening to you. Please see what you can find out about hospice. What about FMLA?
Good luck to you, Christy. Know that we all are thinking about you and hoping for some solutions for you.
Jane
an update on horace
the bipap that serves as a ventilator for horace began beeping off and on the other
day and we now know he is no longer to breathe deeply enough. this means the carbon dioxide is building up inside, making the machien go off, and at some point soon, he will go to sleep and slip into a coma, then be gone. now,,, everytime he goes to sleep, even for a nap, i am terrified.
jackiemax
the bipap that serves as a ventilator for horace began beeping off and on the other
day and we now know he is no longer to breathe deeply enough. this means the carbon dioxide is building up inside, making the machien go off, and at some point soon, he will go to sleep and slip into a coma, then be gone. now,,, everytime he goes to sleep, even for a nap, i am terrified.
jackiemax
fiddleplayer51
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Jackie,
Is there anyone who can be with you so you don't have to be there alone through this?
I've PM'd you. Please call me if you need someone to talk to.
I hope you can rest tonight, Jackie. I'm sure it will seem like a very long night.
Jane
Is there anyone who can be with you so you don't have to be there alone through this?
I've PM'd you. Please call me if you need someone to talk to.
I hope you can rest tonight, Jackie. I'm sure it will seem like a very long night.
Jane
quadbliss
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Hi Jackie,
Something sounds fishy to me. I don't know of any Bi-Pap with a CO2 sensor, or a pathway for exhaled air back to the Bi-Pap. Who is telling you this? Is his inspiratory pressure adjusted to the maximum?
Mike
Something sounds fishy to me. I don't know of any Bi-Pap with a CO2 sensor, or a pathway for exhaled air back to the Bi-Pap. Who is telling you this? Is his inspiratory pressure adjusted to the maximum?
Mike
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