jhenry
New member
- Joined
- Aug 24, 2018
- Messages
- 1
- Reason
- Loved one DX
- Diagnosis
- 01/2016
- Country
- US
- State
- Pennsylvania
- City
- Barto
Hello everyone,
My name is Joann & my younger brother was diagnosed with ALS in June 2016. (They actually decided that he was already afflicted in January 2016) He was not able to breathe & was rushed to the ER in June & at that time had a trach put in. He cannot talk, eat or drink & has been bedridden for over 2 years. He was in a nursing home in the beginning, but in Dec. 2016, my parents brought him to their home.
Because Dave had been a penny pincher since he was very small, he accumulated a decent amount of money. He (my Dad is the Power of Attorney for him) has been paying for round the clock care for close to 2 years, spending about $30000-$35000 per month. He had to be taken to the hospital a few times, which was a major undertaking, as an ambulance needs to get him there & the fire department also needs to be called in order for the road to be blocked for the ambulance.
My parents have been right in the thick of things, even though there are nurses there. They are in their 80's this is really a burden on them, but they said they wouldn't want it any other way. My sister & I try to help them with as much as we can, but we both work full time jobs & the weekends are about the only days we can relieve them so they can go out to dinner, or attend church. Recently, they picked out Dave's tombstone, which broke all of our hearts. And, yesterday, they signed a DNR for him. People keep telling me how strong I am for what our family is going through, but the real heroes are my parents. I don't know how long it will be until my brother passes, but it seems to be getting harder for me to deal with this horrible disease. I'm sure that it is getting harder on all of us, but I can't speak for anyone other than myself.
I joined this forum & have been reading a lot of posts, and you all seem to be so helpful & SO NICE. I'm sorry if I have rambled on, but I was trying to give you the situation in a nutshell.
God bless you all (And, all of your loved ones),
Joann
My name is Joann & my younger brother was diagnosed with ALS in June 2016. (They actually decided that he was already afflicted in January 2016) He was not able to breathe & was rushed to the ER in June & at that time had a trach put in. He cannot talk, eat or drink & has been bedridden for over 2 years. He was in a nursing home in the beginning, but in Dec. 2016, my parents brought him to their home.
Because Dave had been a penny pincher since he was very small, he accumulated a decent amount of money. He (my Dad is the Power of Attorney for him) has been paying for round the clock care for close to 2 years, spending about $30000-$35000 per month. He had to be taken to the hospital a few times, which was a major undertaking, as an ambulance needs to get him there & the fire department also needs to be called in order for the road to be blocked for the ambulance.
My parents have been right in the thick of things, even though there are nurses there. They are in their 80's this is really a burden on them, but they said they wouldn't want it any other way. My sister & I try to help them with as much as we can, but we both work full time jobs & the weekends are about the only days we can relieve them so they can go out to dinner, or attend church. Recently, they picked out Dave's tombstone, which broke all of our hearts. And, yesterday, they signed a DNR for him. People keep telling me how strong I am for what our family is going through, but the real heroes are my parents. I don't know how long it will be until my brother passes, but it seems to be getting harder for me to deal with this horrible disease. I'm sure that it is getting harder on all of us, but I can't speak for anyone other than myself.
I joined this forum & have been reading a lot of posts, and you all seem to be so helpful & SO NICE. I'm sorry if I have rambled on, but I was trying to give you the situation in a nutshell.
God bless you all (And, all of your loved ones),
Joann
