c1adelman
New member
- Joined
- Jan 2, 2008
- Messages
- 7
- Reason
- Loved one DX
- Country
- US
- State
- MN
- City
- New London
Hello everyone!
I'm scared. I've done a lot of reading on this site, but hardly any posting. So here's my Dad's story (briefly.)
He was diagnosed at age 62 in August of 2006. He has Bulbar onset. It started with slurred speech. I miss the days when we would tease him that he sounded drunk! He got a PEG in January of 2008. He uses a BiPap continuously all day and night. Uses a suction machine very often. He has not left the house in months, although he can still walk - barely. He is very weak. I am his primary caregiver. I moved in next door to my parents 2 years ago and am a stay-at-home Mom to my 8 year old son and 3 year old daughter. Mom still works full time as she needs the income and benefits.
Anyway, Dad is having more and more trouble breathing and clearing his throat - even with the use of the BiPap and Cough Assist machine. He was on Hospice, but was just discharged this week because he wants to stay on Rilutek. He has been on Rilutek since his Dx. And Hospice admitted him knowing he was on it, but I think they must have thought he was going to go off of it or something? Anyway..... what is my question? I don't even know..... I just wonder how close he is to the end and how this will all go. He is still taking his feedings and water, so I imagine his body could hang on for quite some time? Will he just get weaker and weaker and go to sleep - or how will this go? At this point he seems scared and not ready to go. He hasn't been able to talk for well over a year, but he does type and "speak" with his LightRiter voice synthesizer.
I feel very blessed for the opportunity to be his primary caregiver and spend all this time with him now..... BUT..... it also scares me! Will his death come suddenly and traumatically while I'm alone, or will it happen slowly ? ? ? ?
I suppose only God knows the answer.... but would love to hear other personal stories.
Thanks for reading....
Cheryl
I'm scared. I've done a lot of reading on this site, but hardly any posting. So here's my Dad's story (briefly.)
He was diagnosed at age 62 in August of 2006. He has Bulbar onset. It started with slurred speech. I miss the days when we would tease him that he sounded drunk! He got a PEG in January of 2008. He uses a BiPap continuously all day and night. Uses a suction machine very often. He has not left the house in months, although he can still walk - barely. He is very weak. I am his primary caregiver. I moved in next door to my parents 2 years ago and am a stay-at-home Mom to my 8 year old son and 3 year old daughter. Mom still works full time as she needs the income and benefits.
Anyway, Dad is having more and more trouble breathing and clearing his throat - even with the use of the BiPap and Cough Assist machine. He was on Hospice, but was just discharged this week because he wants to stay on Rilutek. He has been on Rilutek since his Dx. And Hospice admitted him knowing he was on it, but I think they must have thought he was going to go off of it or something? Anyway..... what is my question? I don't even know..... I just wonder how close he is to the end and how this will all go. He is still taking his feedings and water, so I imagine his body could hang on for quite some time? Will he just get weaker and weaker and go to sleep - or how will this go? At this point he seems scared and not ready to go. He hasn't been able to talk for well over a year, but he does type and "speak" with his LightRiter voice synthesizer.
I feel very blessed for the opportunity to be his primary caregiver and spend all this time with him now..... BUT..... it also scares me! Will his death come suddenly and traumatically while I'm alone, or will it happen slowly ? ? ? ?
I suppose only God knows the answer.... but would love to hear other personal stories.
Thanks for reading....
Cheryl