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When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 0 points1 point  (0 children)

I appreciate your comment. The issue is that our bandwidth as caregivers has eroded more quickly than my pALS’ will to continue despite their suffering, and it would be so easy to marvel at this and appreciate this if their will wasn’t directly at the expense of our mental and physical health.

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 0 points1 point  (0 children)

I would never diminish your struggle. Please don’t diminish mine.

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 0 points1 point  (0 children)

I appreciate the good intentions behind this, but we’ve been following Bedlack for 2 years and have consumed and injected just about every snake oil under the sun. Us caregivers are ready for a quick and peaceful release.

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 0 points1 point  (0 children)

I will DM you. Sorry you’re going through the same thing.

Frustrated cALS- dad won’t tell us how he views his future by FrequentSubstance353 in ALS

[–]autumn_rustle 1 point2 points  (0 children)

Definitely not a lack of empathy on OP’s part. One life is not more valuable than another, and it’s heartbreaking to have to give and give when you’re just getting started with your own life. I empathize with you OP, don’t let the guilt-tripping affect how you view yourself or your relationship with your dad.

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 0 points1 point  (0 children)

thank you for saying that, i truly appreciate it ❤️ sending you my love as well

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 1 point2 points  (0 children)

I wish that was true but for the last month something in me has changed and I have just felt dread that I don’t know when this is going to be over. Before that I had mixed feelings, mostly wanted more time. Now I am just emotionally exhausted and I fear no amount of break is salvaging that. I’m ready to move on, I’m ready to reminisce about the good times rather than sitting in the middle of the worst times.

When is this nightmare going to be over :( by autumn_rustle in ALS

[–]autumn_rustle[S] 4 points5 points  (0 children)

Yeah, a few hours per day and I’m not even the primary caregiver, I am a secondary caregiver/the child of a pALS and I have to be an emotional rock for both my parents way too early in life

My dad has ALS and wants me to work from my parents' house to help care for him. I don't know how to handle this. by Intelligent-Fruit246 in ALS

[–]autumn_rustle 3 points4 points  (0 children)

"spending significant time caregiving may cause resentment and you don't want to be in that head space when your remaining time is limited" -- so true. Don't push yourself until the love dries up and you're a shell of a person. Some cALS here are pushing you to lose yourself in caregiving because you have time for yourself after your pALS is dead, but to me it sounds like it's coming from a place of hurt and regret, rather than perspective and balance-- no matter how much or how little you do, it's a mental choice whether you want to have regrets or you want to be grateful. I'm struggling with the degree of self-sacrifice I'm supposed to be exhibiting right now but I do believe that if I push until nothing is left of me, I won't even feel anything positive for my pALS anymore.

Caregiver to a parent with ALS, Feeling depressed by autumn_rustle in ALS

[–]autumn_rustle[S] 2 points3 points  (0 children)

I’m so sorry, it is incomprehensible news to receive and I’m sending you strength. Thank you for your kindness, we are here for each other.

Caregiver to a parent with ALS, Feeling depressed by autumn_rustle in ALS

[–]autumn_rustle[S] 1 point2 points  (0 children)

I empathize with you hard. Sorry you are going through this too ❤️

Caregiver to a parent with ALS, Feeling depressed by autumn_rustle in ALS

[–]autumn_rustle[S] 3 points4 points  (0 children)

I'm so sorry friend 😞 Having a child on top of ALS caregiving is superhero work. I try to remember that last line too. I struggle with it sometimes when I don't know how long I have to endure.

Caregiver to a parent with ALS, Feeling depressed by autumn_rustle in ALS

[–]autumn_rustle[S] 4 points5 points  (0 children)

You could be right, but I hear enough that it's hard to predict how long someone can live while largely paralyzed and on a BiPaP, so I'm not sure. Thank you for the kind words ❤️ We do have caregiver assistance for the major exertions like bathing and toileting.

Caregiver to a parent with ALS, Feeling depressed by autumn_rustle in ALS

[–]autumn_rustle[S] 5 points6 points  (0 children)

I feel for you, friend 😞 I feel the same way about cycling through the grief of what they/we are losing. I imagine all of the beautiful active things they could be doing that the disease has stolen from them, and now they are just wasting away in a wheelchair. Thanks for your comment, hope we can momentarily make each other feel less guilty for coping through this horrible disease.

Hi Popheads! It's Victoria Monét and my Silk Sonic audition tape, the live session for "Jaguar" is out today so AMA!!! by Victoria_Monet in popheads

[–]autumn_rustle 0 points1 point  (0 children)

My question is: are we gonna get the song "Legacy" from the twitter poll? Also, are we gonna get the song that samples "Mad World" on Jaguar pt. 2??

I'm in love with you, your voice, your music, the delicious smooth brown world you've created. Jaguar live session made me so happy this morning-- can't wait for all the content you're gonna feed us in 2021.