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Wishes, Expectations and Ideas

noh1m

New member
Joined
May 4, 2019
Messages
5
Reason
Loved one DX
Diagnosis
09/2018
Country
US
State
North Dakota
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
 

ReginaS

Forum Supporter
Active member
Joined
Nov 20, 2018
Messages
86
Reason
CALS
Diagnosis
02/2018
Country
US
State
--
Not sure what your insurance situation is. When I read your post home health care came to mind and maybe even hospice.
Here in this area he would probably qualify though they might not support the feeding tube I think...it might be worth it calling a few services.

A home health care service trained me in transitions and especially in using the hoyer lift. There is a way to pull pants up and down when you are in the u sling. They showed it to me but so far I did not need to do it so I might have forgotten how to do it.

If you had hospice you guys would not be so alone in this. However, somebody who is not ready to say good bye probably does not want hospice either.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,513
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Someone like a good PT or OT might be able to help you on the practicalities of how to do what you are doing with your exact setup and his level of functionality. My husband was rapid progression so I was changing my strategies all the time, there isn't one simple answer.
However some others here may chime in with great tips to try!

So far as what you can expect, this is the most difficult part of this disease - everyone is so different we can't predict.

The breathing is the big issue, we can live without moving limbs. If he elects a vent we can't even predict. Some people don't adjust well, or their breathing is still so rapidly declining that it only gives them a few months, and not always good ones. Others adjust really well and live on for 5, 10 years or more. Predicting in advance where your brother will sit is just impossible really.

He may become bed bound, but if you have a good PWC he should be able to spend most of his day up and very comfortable in it. You may end up electing for bed bathing rather than a shower, or doing a shower just once or twice a week.

You may want to discuss having help come in either to help directly with him, or to help with other daily chores to give his wife more time with him, depending on what she would find most supportive. Hospice are not about purely end of life, but you need to check out what is available there really carefully as it seems the organisations really differ within any area.

I hope that helps a little bit, even if it's not maybe the answers you were hoping for ❤
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,234
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Many PALS transfer until the end to their wheelchairs every day, and rather than being "bedbound" in a diaper, still use a toilet or commode bucket using the Hoyer.

His wife could use some support -- does she have any? Your local MDA, ALSA, other caregivers' group (in person or online) or trusted friend/family/third party are all possibilities. If her husband is contemplating a trach, a really serious move, she really needs to have discussions with him and herself that it doesn't sound like she's in a position to have right now.

Best,
Laurie
 
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