Hi everyone,
My husband has had ALS for 2 years now and is progressing quite rapidly. We're off to see his specialist tomorrow for BiPap and I hope it works because his breathing is really becoming affected! He has such a hard time sleeping and each breath that he struggles with, just breaks my heart.
He is very depressed (tried to commit suicide in March of this year) and insists that he will TRY BiPap but if he doesn't like wearing the mask, he won't...
My next hurdle is a feeding tube. Wayne used to have an appetite that was GREAT... I loved cooking for him and buying all of his favourite foods and snacks on my weekly shopping trips. In the last 2 months, he only eats mashed potatoes, jello, pudding, yogurt, apple sauce, canned fruit, and anything else that's soft. He used to LOVE having his cookies at night for a snack and now, I have to talk him into that too.
Anyway, I have to coax him to eat now to keep his weight up. So far (knock on wood) he hasn't lost much weight but he is refusing to get a feeding tube.
How do I deal with this? Do I respect his wishes and watch him wither away? However long that may take?
He asked me to print out his "living will" wishes which includes NO invasive breathing machines, no feeding tube, and a DNR request.
He is still taking all of his pills but I have no idea how long that will last. Being a caregiver is hard enough... I don't know what I would do without our PSW's that come in so that I can still work through the day. But when he refuses to have a feeding tube, how am I supposed to handle that part of it?
Your thoughts are appreciated!
Thank you,
L.A.
My husband has had ALS for 2 years now and is progressing quite rapidly. We're off to see his specialist tomorrow for BiPap and I hope it works because his breathing is really becoming affected! He has such a hard time sleeping and each breath that he struggles with, just breaks my heart.
He is very depressed (tried to commit suicide in March of this year) and insists that he will TRY BiPap but if he doesn't like wearing the mask, he won't...
My next hurdle is a feeding tube. Wayne used to have an appetite that was GREAT... I loved cooking for him and buying all of his favourite foods and snacks on my weekly shopping trips. In the last 2 months, he only eats mashed potatoes, jello, pudding, yogurt, apple sauce, canned fruit, and anything else that's soft. He used to LOVE having his cookies at night for a snack and now, I have to talk him into that too.
Anyway, I have to coax him to eat now to keep his weight up. So far (knock on wood) he hasn't lost much weight but he is refusing to get a feeding tube.
How do I deal with this? Do I respect his wishes and watch him wither away? However long that may take?
He asked me to print out his "living will" wishes which includes NO invasive breathing machines, no feeding tube, and a DNR request.
He is still taking all of his pills but I have no idea how long that will last. Being a caregiver is hard enough... I don't know what I would do without our PSW's that come in so that I can still work through the day. But when he refuses to have a feeding tube, how am I supposed to handle that part of it?
Your thoughts are appreciated!
Thank you,
L.A.