teawoman
New member
- Joined
- Jan 11, 2011
- Messages
- 8
- Reason
- Loved one DX
- Country
- US
- State
- mo
- City
- st louis
Hi Everyone:
I am not caregiving presently, but will probably be involved with the team of carers who are helping out my DIL.
6 mos ago, she could dig in her garden. Hug her kids. Make love with her husband. Talk and smile and laugh and go to work. Drive. Swallow a twinkie. Breathe in a flower's fragrance.
I cannot fathom the degree of acceleration of her symptoms, it seems beyond comprehension. 6 mos later....she is in a wheelchair, her voice is slurred, her left side is disabled, her breathing is now gasping and eating is a desparate act to taste & enjoy food before she can do it no longer.
((((( I hate it for her, I hate it for everyone here))))
I am not wanting to hate God, but I am getting close to doing that. They had a nice life, both of them with great jobs, lovely kids.
Now that life is about none of those things. Her husband is coming through like a champ, but even champs get tired and unhappy and he is stellar person in many ways, but I know the crash will come.
I was caregiver to both my mom & grandma when they had vascular dementia, but this seems worse. At least both of those ladies could eat & breath & move. Comparisons are odious, but ALS seems a living torture...
It has altered my ideas, that is for sure. I almost want to pound those folks who have a few aches & pains & complain or just complain. A 75 yr old friend is a great whiner, but I want to tell her "at least you can walk, eat, talk, breathe....be glad."
I know I am sound unkindly, but I know I am mad at ALS, not anyone or even God (though HE does knows I am not happy, LOL).
Now I need to do something, not just feel hate or anger. Help me to do that. Thanks for listening.... teawoman
I am not caregiving presently, but will probably be involved with the team of carers who are helping out my DIL.
6 mos ago, she could dig in her garden. Hug her kids. Make love with her husband. Talk and smile and laugh and go to work. Drive. Swallow a twinkie. Breathe in a flower's fragrance.
I cannot fathom the degree of acceleration of her symptoms, it seems beyond comprehension. 6 mos later....she is in a wheelchair, her voice is slurred, her left side is disabled, her breathing is now gasping and eating is a desparate act to taste & enjoy food before she can do it no longer.
((((( I hate it for her, I hate it for everyone here))))
I am not wanting to hate God, but I am getting close to doing that. They had a nice life, both of them with great jobs, lovely kids.
Now that life is about none of those things. Her husband is coming through like a champ, but even champs get tired and unhappy and he is stellar person in many ways, but I know the crash will come.
I was caregiver to both my mom & grandma when they had vascular dementia, but this seems worse. At least both of those ladies could eat & breath & move. Comparisons are odious, but ALS seems a living torture...
It has altered my ideas, that is for sure. I almost want to pound those folks who have a few aches & pains & complain or just complain. A 75 yr old friend is a great whiner, but I want to tell her "at least you can walk, eat, talk, breathe....be glad."
I know I am sound unkindly, but I know I am mad at ALS, not anyone or even God (though HE does knows I am not happy, LOL).
Now I need to do something, not just feel hate or anger. Help me to do that. Thanks for listening.... teawoman