Hello,
I've been following this forum for quite some time but have never had the time to share. my husband was diagnosed with ftd 2014 ALS june 2015.
As of this morning he refuses any help with breathing issues..no oxygen no BiPAP no doctor visits no showering it's been almost 5 days again, im lucky if he is able to eat once a day and fluids consist of Popsicles. he's lost almost all ability to walk, refuses to use a walker or wheelchair. He is mute except for the words die and good.
He sleeps most of the day. He will no longer let us weigh him or take oxygen saturation levels with finger monitor. He can't hold his head up for more than 5-10 seconds and refuses to wear neck pad. It takes all his strength to just breathe these days. He still continues to walk on his own body bent in half about 30 feet holding on to things. 9 out of 10 times refusing help or assistance. His means of communication is thumbs up or flips the you the bird with a look to kill if he mad or upset.
I know he will refuse a feeding tube.. So I'm here watching him choose to die on his own terms and feeling a great amount of guilt and anger because I've lost everything good and loving of him I hate FTD and ALS
Life is pretty bleak at this point. Do any of you know what stage he's in, I don't know and he refuses to see the doctor.. I don't know if it's time for hospice. Is he close to 6 months? My daughter was going to enact her FMLA in November and cone home to help but she thinks she should do it sooner any advice.
I've been following this forum for quite some time but have never had the time to share. my husband was diagnosed with ftd 2014 ALS june 2015.
As of this morning he refuses any help with breathing issues..no oxygen no BiPAP no doctor visits no showering it's been almost 5 days again, im lucky if he is able to eat once a day and fluids consist of Popsicles. he's lost almost all ability to walk, refuses to use a walker or wheelchair. He is mute except for the words die and good.
He sleeps most of the day. He will no longer let us weigh him or take oxygen saturation levels with finger monitor. He can't hold his head up for more than 5-10 seconds and refuses to wear neck pad. It takes all his strength to just breathe these days. He still continues to walk on his own body bent in half about 30 feet holding on to things. 9 out of 10 times refusing help or assistance. His means of communication is thumbs up or flips the you the bird with a look to kill if he mad or upset.
I know he will refuse a feeding tube.. So I'm here watching him choose to die on his own terms and feeling a great amount of guilt and anger because I've lost everything good and loving of him I hate FTD and ALS
Life is pretty bleak at this point. Do any of you know what stage he's in, I don't know and he refuses to see the doctor.. I don't know if it's time for hospice. Is he close to 6 months? My daughter was going to enact her FMLA in November and cone home to help but she thinks she should do it sooner any advice.
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