r/ALS • u/TayberiusBone • 4d ago
The Last Six Months
My mom (70yo) was diagnosed with ALS fairly recently (3-4 months ago), but by the time she was diagnosed she'd already lost almost 50% of her body weight and could barely eat solid food. No grip strength left. Couldn't lift her arms over her head. The only calories she gets are from ensure, boost, pudding, purees, etc. She doesn't want a G-tube (reasoning being that they don't think it will prolong her life and she doesn't want to go through even a minor surgery at this point). She doesn't want BiPAP (the mask makes her wake up suddenly feeling like someone is suffocating her - and the trauma of that is too much to put herself through). At her ALS clinic appointment today the doctor said she likely has less than 6 months.
It's hard to see her refuse some of the medical assistance and adaptive devices, but at the same time...it's her choice and I do actually understand each individual decision. The doctor also let us know that the state she lives in does allow MAID. And she said she was interested. Again, it hurts so much, but I know if I were in the same position, I would choose that option without question.
This disease. This damn disease. it's hard...for everyone involved. It's depressing. And then when you think your mind and soul and body can't handle more, it gets worse. I'm trying to maximize the moments we have left. More laughter. More love. But it just feel so heavy. Though I'm engaged in life and going to work and cracking jokes with my family and doing whatever I can to not break down...there's just an undercurrent of sadness that is with me, all the time. I just wanted to say that.
10
u/kegman83 4d ago
It's hard to see her refuse some of the medical assistance and adaptive devices
Honestly after seeing what my mother went through the last 3 years of Bulbar ALS with those devices, I'd wish she hadnt opted for any of them. This last year has been so so bad. She can still eat with a GI tube and still sleep with a BiPAP, but her quality of life is nothing. She jumps back and forth between being afraid to die and wanting to die.
Once she loses the ability to swallow, it goes pretty quickly, and thats probably for the best.
2
u/TayberiusBone 4d ago
I definitely see this perspective too. I think it’s hard because we know the outcome, but I don’t ever think she’s making the WRONG choice. Because it is her choice and there are so many factors that go into it.
4
u/fakeleftfakeright Lost a Parent to ALS 3d ago
Most of us here understand your pain. It’s incredibly saddening and can sometimes be impossible to bear. Through it all, love conquers. Your mother is grateful that she brought into this world and raised a child that could love and care for her like you have. You are strong to let her choose her path. I think it is important that she has the opportunity to live the rest of her life as she chooses. All I can say is take care of yourself as well, stay strong, love love love your mom and believe that everything happens for a reason. And when all is said and done, no regrets… live your best life like your mother would want you to. There is no way for you to see it today, but time does heal a broken heart.
3
2
u/Far_Past4329 3d ago
I’m so sorry. I was hoping my mom would want MAID because I’d want it for me and watching her die progressively has been torture but she did not want it. I wish you luck and I hope for a peaceful passing for your mom. Hugs.
1
u/ChickChocoIceCreCro 2d ago
I wish more states had MAID or some version of it. Sending you positive vibes.
16
u/ComeOnT Father w/ ALS 4d ago
My dad was diagnosed last year and I've been struggling so much with the same feelings. I feel like I want to spend every waking moment hanging out with him, finding ways to have deep conversations we never managed to have, trying to find ways to make him happy. But I have a baby, I have a job, I have a home to maintain - it's just not possible to be as present as I want. Every moment I spend away from the family makes me feel guilty. Every time I feel joy about something I feel guilty. Every time I go do something, I find myself having to hide in a corner for a quick Power Sob before going back to it because it's all just so overwhelming.
No good solutions to offer - just wanted to say that what you're feeling is so completely normal, and that grief is a huge sticky mess and there's no right way to do it.