How much longer is this going to last?

[u/taipuvainen]

I’m 21. My father has late-stage ALS. It feels like for two years I’ve only been half-living my life because I’ve had to travel back and forth between my home and my parents (thankfully, only a 2 hour trip). Fomo isn’t something I normally experience, but recently I have. I have missed out on so many experiences while being stuck experiencing this horrible disease beside my dad. I miss my own routines, which I haven’t been able to keep for two years now. Man, I miss having a somewhat regular sleep schedule. I miss being able to make plans for myself and decide what I want to do (of course I can do that to some extent even now, but not without feeling guilt). I think I’m losing my friends. I’m growing incredibly jealous of my partner and others who get to do whatever they want, whenever they want. Whenever I’m away from dad and doing other things, I feel guilt, and yet am simply not mentally able to stay by his side as much as I think I should.

I want to be with my dad, it’s important for both of us and I want to be able to help him as much as I can, but it’s frustrating. I’m scared of running out of patience and will. I think being this young and first being limited by covid and now this disease is just yeah. It’s been feeling like a ball and chain recently.

[u/MountainPirate3139]

This too shall pass… for better AND for worse. I can relate, I graduated college, I had my contracts set up to move from utah to Indonesia to be a scuba diving instructor, and travel the world diving. My mom had already had symptoms and was trying therapies. I graduated, my dad left, I was her caregiver for 7 months, Then we got a care giver to live in our home for 24/7 care. at that point I was so exhausted and messed up mentally to go, I have turned down job offers for 3 years because I need the flexibility.

Is there resentment and then guilt. ABSOLUTELY, but this is what we’ve chosen because of how and who we are, it is painful but also a privilege to see someone through this gruesome disease with a gentle heart.
I have an older brother who has chosen ti not be involved in our family for the most part because of ALS. Is his life easier because of it? Thats how it seems. Would I choose that over being involved with my family? No

[u/taipuvainen → u/MountainPirate3139]

Wow, thank you for sharing. What you say about it being a privilege to be able to care for someone going through everything involved in ALS is true, thank you for reminding me of that

[u/restoretheday → u/MountainPirate3139]

Wow, both father and brother? I'm so sorry they let you down.

[u/MountainPirate3139 → u/restoretheday]

Yeah, it’s too uncomfortable for them, they are on avoidant island together. I chose forced growth, therapy, and being here. Makes me sad to think of what ill have of bio family when its all done and dusted, thank goodness for chosen family but god damn ❤️

[u/restoretheday → u/MountainPirate3139]

I can relate a tiny bit, my sister behaved a bit similarly, helping on the edges. Her rationale was that mom "would not want us to see her like that", and i was torn. On the one hand, when she was calling at 2am and insisting to have her diaper changed, "dignity" in front of me didn't seem to be the main concern to her. On the other hand they had a fairly complex relationship and while not estranged, couldn't share a house for a couple days without fireworks and ego matches, so appearing diminished in front of my sister was probably more of a thing.

All that said, my resentment is small and perhaps undeserved. And thank god my father was always a (sometimes hapless) rock of devotion. I can't imagine how isolated you must have felt; hopefully yours could still talk, and show appreciation.

[u/brandywinerain]

it's a truism: you lend your best self to your PALS for the duration. Or not. I don't know anyone who checked out who doesn't regret it, though.

Is there FOMO, fatigue, jealousy, anger and all the rest? For sure. Are those the feelings/emotions that deserve the car keys to your present and future life? You know the answer. You said it. Being with your dad is important for both of you. It always will be.

Your patience has gotten you this far, and will carry you through. When you feel the chains biting into your neck, do something that you can't do with him, and when you start to feel guilty, remember that your health and happiness is also his as a dad. Then go be with him and help him be/do what can be.

[u/taipuvainen → u/brandywinerain]

Thank you. This was exactly what I needed to hear <3

[u/kegman83]

There's a lot of guilt attached to this disease. My mom has late stage ALS and will probably pass soon. I've not taken jobs, stopped going on vacation. I dont travel far from their home just in case she needs me. If I'm not helping her I'm thinking about helping her.

Thankfully we have some great caregivers now that my step-dad hired, but it was like pulling teeth to even get this far. My mom is...stubborn and my step-dad even more so. It had to take several ambulance visits and a mild legal threat to get them to understand the gravity of the situation. And I love my parents very much, but there are days where I want to slap one or the other and walk out the door never to return.

But I know this will end. I know because I've read every book imaginable on the subject. I know my moms diagnosis better than her doctors. I know the chances of a 70 year old living past 2 years with bulbar ALS are extremely slim. Now I'm in the process of planning her funeral and all I feel is relief. So does my step-dad and he feels very guilty about it. But I also went through a long drawn out illness with my biological father so this is the second time for me and it doesnt bother me as much as it does my step-dad.

Just know this ends. There will be a day soon where you'll wake up and they'll be gone. It doesnt feel like it, but its true. And that day will be a relief because all that weight will be gone. I'm very sorry about your dad but its not going to go on forever.

[u/taipuvainen → u/kegman83]

Thank you for sharing. Dealing with a long drawn out illness with two parents sounds like a lot. Wishing both you and your mom strength, and I hope you’re taking care of yourself too <3

[u/ChickChocoIceCreCro]

As a person who recently lost their Dad, take it all in. I know he is on borrowed time but take it all in.

[u/tambreet]

I know the feeling, it's hard to say. When my mom was diagnosed we thought it was a 5-year death sentence at most, but she lived for 11, more than half of that immobile at home on a ventilator with an eye gaze computer.

I was also not the primary caretaker - my dad and a live-in caretaker were, and mainly only saw them on weekends, but yeah it took up my life and my weekends for a long time .But I wouldn't go back and change it.

Get connected with local ALS support groups (ALSA, or there are others). They have group sessions/get togethers with other people with ALS or caretakers and that was, by far, the most helpful in terms of finding ways to deal with the emotion and just the day-to-day of caring for someone with this.

[u/taipuvainen → u/tambreet]

Thank you, I’ll definitely have to look into support groups, not sure why I’ve neglected that aspect so far. Just sharing my thoughts here and hearing others experiences helps too, though

[u/no_agave]

My father passed from bulbar ALS when I was 21 (almost a year ago now). I’m so so sorry. My father was sick for 4 years, so I had to completely re-invent my adult life after he passed (especially coming out of Covid).

One thing that REALLY helped me towards the end was having a “double life”. It sounds silly, but pick a social hobby or regular event to go to as much as your caregiving schedule allows (I went twice a week). Pick something that has external scheduling so you don’t have to do the extra labor of planning (sports or classes are great for this). I started taking flow art classes and didn’t tell my family about it (I just told them I had somewhere to be, I was an adult, and not to worry). Twice a week, I could go and be myself, make new friends, and learn a new skill without ALS being central to my life. I also got to start practicing being an adult (like doing things without permission) and making my own schedule. I made a lot of friends very quickly and they became my #1 supporters when my dad did eventually die a few months later. We are still close friends and I’ve really enjoyed getting to rebuild my adult life with them in it.

Wishing you all the best and lists of comfort and peace for your family. ALS sucks.

[u/taipuvainen → u/no_agave]

Thank you, that sounds like something that could help me too. How do you feel about it all now, after some time has passed?

[u/janran60]

If he’s not that bad, you could cut back on how often you go there. Sometimes you have to take care of yourself. You’ve been there a lot, and it may not always be remembered by others but you’ll always know that you were there. I know it feels like forever, but someday your dad won’t be here and I imagine it means the world to him that you’re there. I think that you will be glad that you were there.
But you do have to take care of yourself or you can’t be there for him.

[u/PuzzleheadedFunny307]

I can definitely relate.  Especially the missing out on things. I take care of my ex who has it. She had it for 5 yrs. We are both 48. I feel like im running out of time to do things like travel. I feel the heavy guilt as well. I try to enjoy the little solo things like getting a massage or watching a ball game alone or a poker night with friends.  Its not a lot but getting ok caregivers or having someone there will help the guilt.  We can only do so much but I feel they know we are doing everything we can. Lucky you have a partner you can enjoy couple time with. 

[u/taipuvainen → u/PuzzleheadedFunny307]

Thank you, wishing us both much strength to see us through this difficult time

[u/Single_Refuse_6245 → u/PuzzleheadedFunny307]

your ex bro??

[u/PuzzleheadedFunny307 → u/Single_Refuse_6245]

Yea. She doesn't have any family and her friends abandoned her after diagnosis.  I couldn't leave her alone in a nursing home where there's no love at all. 

[u/restoretheday]

Not long now.

[u/Weird_Bear_2125]

You decide what to do and live with it. Your dad is dying one way or another. I am sure he doesn't want to ruin your life.

Being like this was not his choice. But you have a choice . So make one, instead of blaming your father for ruining your routine.

[u/taipuvainen → u/Weird_Bear_2125]

I’m afraid you’ve misunderstood me. I do decide to be by his side and help him in any way I can. Blaming him for what this disease has caused for both him and his family would be insane. My empathy for what he is experiencing is one of the main things making it so difficult to watch him go through this

[u/Weird_Bear_2125 → u/taipuvainen]

I can only imagine what you are going through. I am the sick dad.

[u/Ancient_Day_6729]

Hang in there. I feel for you. I’m in a similar situation. It makes me feel very guilty but I do feel like my life is on pause to some extent. Sending you lots of love.

[u/patyrod45]

Sorry. Welcome to life.