Punkie65
New member
- Joined
- Mar 20, 2013
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 07/2006
- Country
- US
- State
- PA
- City
- Beaver
As I read the stories of all the people that are affected by this horrible disease, I can't hold back the tears. My husband, Frank, has had ALS since 2006, and it was a rapid ride downhill. He lost his voice first, had a G-tube within two months, and because he never signed his living will (I think he was afraid to), I was the one who had to decide on a ventilator 4 months later. Now that I look back on it, I guess I could say I was afraid of loosing him and wanted to do anything (even if it wasn't his wish) to keep him with me & my son.
I have been his sole caregiver the entire time - I could never leave him with anyone besides my sister because I felt no one could take as good care of him as I could. She is an RN who works with long and short term critical patients (thank God we've had her in our lives - she's been my strength through it all).
As the years progressed, Frank had to deal with constant pain, extreme atrophy (he had to have the upper half of his femur removed because the atrophy pulled his hip out of the socket), his eyes became too weak to use his Dynavox Eyemax machine after a few years, and he just passes the time in front of the TV. To move him for wound care and washing (every three days) he had to be heavily medicated. He has to use a rectal and external cathetar since movement is so limited. We had a Hillrom Sand bed brought in after 2 years of pain and bed sores.
Now he has developed an esophogeal fistula, that due to his delicate condition can not be surgically fixed (He has indicated that he doesn't want it anyway). He now has an open bolice on his G-tube to vent the excess air that is sucked into his stomach with each breath and he has been so depressed that all he can do is stare into space, or cry. I have never felt so worthless as I do when this happens - I can't seem to say or do anything to lift his spirits. He is on so many pain medications and depression medication that there is nothing left to try - his doctor has tried everything in his power to make Frank comfortable and less sad.
Our son (16) is a highly functional autistic, who lacks empathy due to his autism, only one friend has remained in touch with him due to lack of communication, and the only other people in his life are my sister and another family friend who fills in when needed. His mother and father are both in very bad health, and rarely visit any longer.
Now comes the hardest part of this story to tell. He has been communicating to me through eye movement and hundreds of questions on my part, that he wants to be taken off of the vent. His physician (he has been a God send, also - so very caring), has agreed to perform a terminal-ween on Frank's behalf. I know it is what Frank wants, and at times during the night when I'm laying alone in bed crying with my heart breaking, I know it is the right thing to do, too.
Frank is so afraid, I can see it in his eyes. I can't imagine what is going through his mind as I try to calmly discuss his wishes. Calmly - what a laugh - I'm a mess.
I knew that he eventually would die, but I alway prayed he would slip away quietly and painlessly by the grace of God. I feel as if even our faith has deserted us.
I pray for all who have been diagnosed with this monster and for those who care enough to tend to them and their needs. Thank you for listening to a very sad wife and mother tell her story to someone who might understand.
Pray for a cure - pray for comfort for all.
I have been his sole caregiver the entire time - I could never leave him with anyone besides my sister because I felt no one could take as good care of him as I could. She is an RN who works with long and short term critical patients (thank God we've had her in our lives - she's been my strength through it all).
As the years progressed, Frank had to deal with constant pain, extreme atrophy (he had to have the upper half of his femur removed because the atrophy pulled his hip out of the socket), his eyes became too weak to use his Dynavox Eyemax machine after a few years, and he just passes the time in front of the TV. To move him for wound care and washing (every three days) he had to be heavily medicated. He has to use a rectal and external cathetar since movement is so limited. We had a Hillrom Sand bed brought in after 2 years of pain and bed sores.
Now he has developed an esophogeal fistula, that due to his delicate condition can not be surgically fixed (He has indicated that he doesn't want it anyway). He now has an open bolice on his G-tube to vent the excess air that is sucked into his stomach with each breath and he has been so depressed that all he can do is stare into space, or cry. I have never felt so worthless as I do when this happens - I can't seem to say or do anything to lift his spirits. He is on so many pain medications and depression medication that there is nothing left to try - his doctor has tried everything in his power to make Frank comfortable and less sad.
Our son (16) is a highly functional autistic, who lacks empathy due to his autism, only one friend has remained in touch with him due to lack of communication, and the only other people in his life are my sister and another family friend who fills in when needed. His mother and father are both in very bad health, and rarely visit any longer.
Now comes the hardest part of this story to tell. He has been communicating to me through eye movement and hundreds of questions on my part, that he wants to be taken off of the vent. His physician (he has been a God send, also - so very caring), has agreed to perform a terminal-ween on Frank's behalf. I know it is what Frank wants, and at times during the night when I'm laying alone in bed crying with my heart breaking, I know it is the right thing to do, too.
Frank is so afraid, I can see it in his eyes. I can't imagine what is going through his mind as I try to calmly discuss his wishes. Calmly - what a laugh - I'm a mess.
I knew that he eventually would die, but I alway prayed he would slip away quietly and painlessly by the grace of God. I feel as if even our faith has deserted us.
I pray for all who have been diagnosed with this monster and for those who care enough to tend to them and their needs. Thank you for listening to a very sad wife and mother tell her story to someone who might understand.
Pray for a cure - pray for comfort for all.
