Ann Marie
New member
- Joined
- May 2, 2022
- Messages
- 4
- Reason
- CALS
- Diagnosis
- 02/2022
- Country
- US
- State
- MA
- City
- Waltham
Hi everyone- I need, for some stranger reason, to get an answer to a question about disappearing friends and family- too long in my own head trying to work this out so its open forum time. Husband has ALS, at home, has refused vent- G tube- and made me promise no hospice. So its him and me against the world. He has Bulbar ALS. BEFORE he even lost the ability to speak, everyone- except for one guy who calls once a month- has vanished. He has 1 brother- in Maine and the sister is back and forth from Bahamas or Florida. NEITHER have attempted anything more than a text since DX. They both said " just dont want to see him like that" verbatim! Obviously, they have talked and that the line they are going with.
Here's where it gets interesting.......that is- or a version thereof- what I get from friends! Just couldn't see him that way- too much for me to see him like that- dont want to remember him like that.........you get the picture! 2 different girlfriends, each stopped by one time. Last October of 22 and February of 23, not since. I feel like I am living on an island with nothing but miles of desert sand between us and a functioning world.
To round out the full rant- we have 2 kis, one married, no children- one single, not children- one is 5 miles away, the other probably 10 miles. Both late 30's............nope, dont see them either. Son, about every 10 days-2 weeks, he will call me on his ride home from work, a 10 min call- 20 min if there is traffic. Daughter, if she needs/wants or asks about something, 9 out of 10 its texts. Neither have any issues with finding time for long weekends, Florida,, visiting out of state friends...etc.
I have asked for help so many times and its never something they can manage at the time, I don't ask anymore- AT ALL nor do I text first, only reply. Both have an aversion to "seeing dad that way" and I'm supposed to understand. Also to clear the air, there is zero bad feelings, no words anywhere- just poof! People just vanished. No one wants to face the Bulbar ALS and everything else that goes with it, i.e. the work load, the heart break- isolation. Anybody out there gone/ going thru the same?
Here's where it gets interesting.......that is- or a version thereof- what I get from friends! Just couldn't see him that way- too much for me to see him like that- dont want to remember him like that.........you get the picture! 2 different girlfriends, each stopped by one time. Last October of 22 and February of 23, not since. I feel like I am living on an island with nothing but miles of desert sand between us and a functioning world.
To round out the full rant- we have 2 kis, one married, no children- one single, not children- one is 5 miles away, the other probably 10 miles. Both late 30's............nope, dont see them either. Son, about every 10 days-2 weeks, he will call me on his ride home from work, a 10 min call- 20 min if there is traffic. Daughter, if she needs/wants or asks about something, 9 out of 10 its texts. Neither have any issues with finding time for long weekends, Florida,, visiting out of state friends...etc.
I have asked for help so many times and its never something they can manage at the time, I don't ask anymore- AT ALL nor do I text first, only reply. Both have an aversion to "seeing dad that way" and I'm supposed to understand. Also to clear the air, there is zero bad feelings, no words anywhere- just poof! People just vanished. No one wants to face the Bulbar ALS and everything else that goes with it, i.e. the work load, the heart break- isolation. Anybody out there gone/ going thru the same?
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