noh1m
New member
- Joined
- May 4, 2019
- Messages
- 7
- Reason
- Lost a loved one
- Diagnosis
- 09/2018
- Country
- US
- State
- ND
- City
- Hillsboro
I don;t know if I have questions or if I am just venting. When a challenge arises I can usually figure it out.
So, my brother has ALS and just turned 60 last month. I am 55 and his co-caregiver. His symptoms started 1 year ago and now he can't move anything but his head and he can barely hold that up. He and his wife talked years ago about end of life cares, ie. no feeding tubes or breathing tubes as well as DNR and is so stated in his medical directive. I asked her about this today and she told me he said he is not ready to go. He has a PEG tube and uses a bi-pap and I imagine he will eventually go with a tracheostomy for breathing. So I am a little confused but I guess that is his decision and I won't doubt him on it. He is doing Radakava and Riluzole but after his fall in December he has progressed fast.
His wife had a moment the other day when the conversation turned to taking the Riluzole or not and she vented to him about it. She can't understand why he wants to live like this and prolong the inevitable. She said to him, I Love you but you are dying and maybe you haven't accepted it. You're dying but I am dying too. You're killing me, I am stuck here, I cant even go for a walk unless someone is here. Soon you will be in that bed 24 hours a day, Is that what you want, to be laying there with a diaper on? He said I want to stick around for a while. She said what kind of life is this, there is no quality of life here.
I get it and I understand both sides of it.
Now, back to my issues...
Previously we had been using a sit to stand for transfers from power chair to shower/commode chair but that is not working anymore. Today we used the u-sling I borrowed from the hospital to transfer from power chair to shower chair for his shower under a heated tent in the garage, (their house is not set up as well as it could be) It went fairly well considering it was the first time doing this. We did had some issues with getting his shorts on and off while he was in the chair. I am not sure how it would be to do this while he was in the Hoyer sling.
I like to plan ahead so any thoughts or ideas would be helpful for me. Does anyone have any ideas on a way to make the processes easier? What can we expect in the days/months to come? Whats next? How long does he have? Will he be bed ridden? if so, how do we care for him then? Like I said earlier, when a challenge arises I can usually figure it out
Tired but still going,
Jon
So, my brother has ALS and just turned 60 last month. I am 55 and his co-caregiver. His symptoms started 1 year ago and now he can't move anything but his head and he can barely hold that up. He and his wife talked years ago about end of life cares, ie. no feeding tubes or breathing tubes as well as DNR and is so stated in his medical directive. I asked her about this today and she told me he said he is not ready to go. He has a PEG tube and uses a bi-pap and I imagine he will eventually go with a tracheostomy for breathing. So I am a little confused but I guess that is his decision and I won't doubt him on it. He is doing Radakava and Riluzole but after his fall in December he has progressed fast.
His wife had a moment the other day when the conversation turned to taking the Riluzole or not and she vented to him about it. She can't understand why he wants to live like this and prolong the inevitable. She said to him, I Love you but you are dying and maybe you haven't accepted it. You're dying but I am dying too. You're killing me, I am stuck here, I cant even go for a walk unless someone is here. Soon you will be in that bed 24 hours a day, Is that what you want, to be laying there with a diaper on? He said I want to stick around for a while. She said what kind of life is this, there is no quality of life here.
I get it and I understand both sides of it.
Now, back to my issues...
Previously we had been using a sit to stand for transfers from power chair to shower/commode chair but that is not working anymore. Today we used the u-sling I borrowed from the hospital to transfer from power chair to shower chair for his shower under a heated tent in the garage, (their house is not set up as well as it could be) It went fairly well considering it was the first time doing this. We did had some issues with getting his shorts on and off while he was in the chair. I am not sure how it would be to do this while he was in the Hoyer sling.
I like to plan ahead so any thoughts or ideas would be helpful for me. Does anyone have any ideas on a way to make the processes easier? What can we expect in the days/months to come? Whats next? How long does he have? Will he be bed ridden? if so, how do we care for him then? Like I said earlier, when a challenge arises I can usually figure it out
Tired but still going,
Jon