MsBoots
New member
- Joined
- Feb 3, 2016
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 01/2016
- Country
- US
- State
- Pennsylvania
- City
- Phla
Hi Everyone,
I'm new here.
My Dad was diagnosed at the end of January, 2016. His progression seems to be rapid and he can't even make it to his first Clinic which would have been tomorrow. He'd have to go flat on his back in an ambulance. He is 83 and just arrived from independent to skilled nursing in his CCRC after a fall and hospital stay. He got a bipap almost immediately after diagnosis but the ALS Clinic nurse and CCRC med director both think a PEG will not do any good at his age and progression, so I am not even going to bring it up with him.
My Mom is in the same building, in the lockdown memory unit (Alzheimer's). While my Sis and I are very grateful for the care and equipment in both units, they are 90 minutes away from us and I can't stand only seeing him once a week. I can't even call him anymore - he can't speak loudly enough. My heart is broken. I used to call him every day while walking home from work. He often said he enjoyed walking me home, including two short weeks ago.
Mom doesn't really care if we are in her presence or not, but it is comforting for me to see her anyway. Her physical health is perfect except for walking (broke a hip, so she's in a wheelchair).
The CCRC is so helpful with everything. I know we are very lucky. We are not rich people. We only got into a CCRC because of long term care insurance.
I just wanted to say that I have been reading posts here since the dx and am finding it all very helpful. I appreciate all of you.
I'm new here.
My Dad was diagnosed at the end of January, 2016. His progression seems to be rapid and he can't even make it to his first Clinic which would have been tomorrow. He'd have to go flat on his back in an ambulance. He is 83 and just arrived from independent to skilled nursing in his CCRC after a fall and hospital stay. He got a bipap almost immediately after diagnosis but the ALS Clinic nurse and CCRC med director both think a PEG will not do any good at his age and progression, so I am not even going to bring it up with him.
My Mom is in the same building, in the lockdown memory unit (Alzheimer's). While my Sis and I are very grateful for the care and equipment in both units, they are 90 minutes away from us and I can't stand only seeing him once a week. I can't even call him anymore - he can't speak loudly enough. My heart is broken. I used to call him every day while walking home from work. He often said he enjoyed walking me home, including two short weeks ago.
Mom doesn't really care if we are in her presence or not, but it is comforting for me to see her anyway. Her physical health is perfect except for walking (broke a hip, so she's in a wheelchair).
The CCRC is so helpful with everything. I know we are very lucky. We are not rich people. We only got into a CCRC because of long term care insurance.
I just wanted to say that I have been reading posts here since the dx and am finding it all very helpful. I appreciate all of you.