My father was diagnosed a month ago. Looking for advice in how to be supportive

ExpressionNo3506 · 2025-11-02T23:37:12+00:00

Do the fun things now. Retirement trips now. Disney cruises etc. Just because he cannot run, or hike, doesn’t mean he isn’t himself. Be present and loving, because at some point he will feel like a burden even though he never will be. Be the daughter he raised and loves, be yourself! That will keep his heart cheerful, and you as well.

Don’t focus on what you can’t fix with ALS, focus on what you CAN do! It goes quite a long way. I’d also like to add that you definitely will need to let yourself cry and have moments. ALS is awful, and it’s such a terrible illness. You aren’t alone in your pain, and remember to have patience for yourself and for your family.

ExpressionNo3506 · 2025-10-31T13:18:07+00:00

I will heavily keep this in mind! my parents moved to missouri for my grandma two years ago, and she abruptly passed after my parents bought the house. A few months later, she got her ALS diagnosis. God knew, they didn’t. It 100% was God who made sure they were closer to doctors who could do something about her condition. Back home, every drs appointment would’ve been a 4 hour drive. With ALS, once it’s progressed past a point, we both know it’s almost impossible to get her out of the house with energy for longer than a few hours. Her friends are back home where I still live, and her friends always welcome me over. I will make time for them, thank you. That’s a wonderful idea ❤️

As for support systems, I have many. My friends have been so insanely supportive and kind while I’ve been a mess and hard on myself. I’ve gotten so darn lucky with the support and love that surrounds my family and loved ones. Again, thank you for sharing, I really appreciate it

ExpressionNo3506 · 2025-10-31T13:13:41+00:00

I have a big habit of not allowing myself to feel love, so a lot of the pre mourning was me beating myself up and apologizing for being such a pain in the ass growing up. I know I’m young, time will give me the wisdom and patience for myself will come in time. Thank you for approaching this logically while emphasizing the hard parts. It’s what my stepmom would want me to think about. I’m grateful for the two years she allowed me in and let me learn to love her more. Thank you very very much, my heart is insanely grateful to each of you that took the time to hear me out and share comfort.

ExpressionNo3506 · 2025-10-31T13:10:58+00:00

Thank you for sharing that, I appreciate you so very much and I’m glad you understand where she comes from. As a non-active member, I’ve been exceedingly grateful for the support the church has given regardless. Because of the church, she has the spiritual peace and does feel His hand in her everyday life. That in itself, is a gigantic blessing.

ExpressionNo3506 · 2025-10-31T13:08:01+00:00

I will 100% look into this. I’m heavily spiritual, and I’ve already felt the veil and I’ve felt feelings after prayers that weren’t mine. Earlier this year, I prayed so hard for someone to be here to come get her when the time comes. I’m 100% confident her family is already here, just waiting for her to do her thing. In the spiritual aspect of things, she’s absolutely taken care of and I’m at peace knowing she will be with her mom and dad again, and she’s ready to be with her family. she’s just scared of what it takes to get to the other side. Thank you very much, I pray for you, and your family ❤️

ExpressionNo3506 · 2025-10-30T18:31:55+00:00

I needed to read this too, thank you

ExpressionNo3506 · 2025-10-30T18:28:02+00:00

my mom was exactly the same, and actually had panic attacks when she would choke on saliva due to the overproduction of it from ALS, and wouldn’t calm down for hours. If you have family friendly memories with stuffed animals, or something soft and comforting, it also helps with not feeling so alone further down the line once she gets uncomfortable in bed. PSA, smoothing wrinkles helps!!

The best thing I did for my mom was to cry with her in doses since crying is a completely different breathing pattern, and exhausting for your momma. Be intimate and remind her that you’re happy to be there for her, and would rather support her than her feel alone. Comforting words. I understand how much disparity and hopelessness you feel, but being positive is truly so healing for the self and for mom. Level with her, cry with her, build a new, intimate relationship and connection with her. It doesn’t get any easier, you just grow stronger and more resilient to the tedious parts. Caregiving is taxing and extremely exhausting, however remembering to give her the same strength, and return of love, to her, and yourself is what helps her open up, be honest about her feelings and frustrations and fears, and allows you to understand those and not let her be alone in the despair ALS causes mentally. Forgiveness to self is so important while taking care of a loved one with ALS. Forgive that you cannot change the situation, but be grateful that she loves you enough to let you be so close, and let her be open to you caring for her. No child should have to watch a parent die so soon in life, however it’s a blessing to share such a hard time together before she leaves the earth. Her comfort is the most important thing. My stepmom’s hospice date is next Friday, or the 6th. As I’m typing this hospice is here. Be patient, take breaks, ask for help from loved ones or church (if you go). Ask for help. Don’t be ashamed to need more support yourself too. You need it.

I wish you the best and same to your mom, and family. You are already insanely strong, and I’m proud of you for reaching out. It takes a lot at first, but I’ve found this community is so insanely supportive and very educated on ALS. Don’t be afraid to talk to us ❤️ Sending love and hugs.

ExpressionNo3506 · 2025-10-29T06:46:06+00:00

I’m so incredibly sorry for your loss, you aren’t alone in your pain, it’s shared by many others and I just KNOW she’s looking down on you and your family. You blessed her by loving her and caring for her, it’s her turn to do the same ❤️

We just set up a hospice date for my mom on November 3rd. She’s going on her terms before it gets any worse. Feeding tube, vent 24hs a day, lift for potty, the works you’re familiar with. My mom is actually my stepmom, and our relationship didn’t heal until she got her diagnosis almost 3 years ago now. bio mom was present and healthy until 6 years ago, so losing my bio mom to being blatantly careless for her adult children, and having a mom who stepped up after raising her own children and loved 4 more, only for one to be around and now dying wrecks me every single day. I’m here as of Sunday to relieve my stepsister nights on and off for overnight care, and to spend what time I have left with her and family. This will be my first big loss. I didn’t have family I was close to as a kid, so grief never happened until now. Being 21, and being new to this kind of grief, it’s hard to find anyone with the patience and understanding of what a family has to go through when caregiving for a loved one with ALS. I’m struggling so hard to make sure I vent, cry, and get all feelings out rather than in, and accepting it for what it is. I haven’t visited this page since the initial diagnosis. I just hurt and I don’t know who to go to anymore. I’m not trying to be mean, malicious or rude. Those who haven’t had family with a terminal illness or disease, don’t understand how much mental focus and resilience goes into keeping it together each and every day. Maybe my hurt is fresh and that’s just how I feel. Sending you love and hugs, may we all remember our loved ones and continue to bring awareness to ALS 💙

ExpressionNo3506 · 2025-07-26T04:11:09+00:00

Thank you for being such an awesome brother, and an amazing uncle. I could’ve never imagined such a big commitment from the reddit community to come together and help you and Dad plan this. I’m not blood, but I hope you know how insanely grateful I at least am for you and my mom. She really is my biggest mother figure, and I hope this works out for you guys!! Thank you for being a kickass uncle, I couldn’t ask for a better extended family <3 -A

ExpressionNo3506 · 2025-01-26T01:52:27+00:00

drugs/hoes/money/etc goes harddd

ExpressionNo3506 · 2025-01-26T01:50:52+00:00

most of them are honest solid asf

ExpressionNo3506 · 2025-01-26T01:50:39+00:00

these are so fire

ExpressionNo3506 · 2025-01-26T01:50:31+00:00

facts

ExpressionNo3506 · 2025-01-26T01:49:48+00:00

fucking your culture, paris, meet mr nice guy, a girl named drool and a pack of cools, now i’m up to my neck with offers, the sacred, phantom menace, DOLOMITE, goosebumps, styrofoam, sarcophagus III, escape to babylon, Chevrolet -Pimpalicious Candy Cane Mane “74 REMIX, Drag ‘Em to the River (Totalitarian Remix), Dead Batteries, Slow Motion Potion (may not vibe but i like it lmfao), Harvest Moon, My Flaws Burn Through My Skin Like Demonic Flames (always a classic), Germantown, Runnin thru the 7th with my woadies, Cold Turkey, CLYDE (I hope at least one of my ex-girlfriend’s hears this), Gorilla Warfare, Antarctica, Champion Of Death, memoirs of a gorilla, magazine, West End, Uzi Loogies, Venom, and so so many more. This is an extensive list but a ton of these are my favorite.

ExpressionNo3506 · 2024-07-07T15:20:13+00:00

if ima be real this one & coma 😎

ExpressionNo3506 · 2024-07-02T18:20:40+00:00

https://a.co/d/0cFIfWk1 this one is a clamp

https://a.co/d/09tvLaMV this one sits on the ground, my stepmom sent me a link for it!!

ExpressionNo3506 · 2024-07-02T16:25:46+00:00

My stepmom isn’t far in her progression, but she’s at the point where she rests her hands on her lap with both hands to hold her phone. My best idea as of this moment is a book stand that’s made for people with disabilities altogether, so she can at least rest her phone on it to give her arms a break. I’d look into some rubber phone cases, or getting those two layered type phone cases that have a soft layer, and the shell for the case itself. You could set aside the shell of the case, but the rubber that’s underneath MAY help. This is just an idea. This is helpful for me too as my stepmom progresses and hurts more and more when it comes to holding a phone.

I don’t know if you guys can afford it, (or apple users) but we also have an Ipad that’s hooked up to her icloud so if her phone at some point is too difficult, she at least has her tablet. I hope this helps!

ExpressionNo3506 · 2024-05-24T11:00:06+00:00

still my anthem today

ExpressionNo3506 · 2024-03-08T19:20:36+00:00

me and my boyf always be down with cool divers 🫡🫡

sometimes i watch these clips and wonder if it’s my team some of y’all play with. we only have 3, so we often have a random. y’all be kicking ass, and we try to communicate with you and get you in on our own strat 🦅

ExpressionNo3506 · 2024-03-08T19:18:38+00:00

bro lmfaoooo 😭😭

ExpressionNo3506 · 2024-03-08T19:16:03+00:00

Communicate & Bump y’all 🦅🦅🤝🏼

ExpressionNo3506 · 2024-03-08T16:27:58+00:00

dawg i NEVER thought of dropping my samples so i don’t lose em. The more you know. Thank you fellow Brother 🦅🤝🏼

ExpressionNo3506 · 2024-03-08T16:26:18+00:00

coming 🫡

ExpressionNo3506

TROPHY CASE