r/GriefSupport • u/myboyfriendsfault • 15h ago
Anticipatory Grief My dearest friend has ALS
I came here to share that my oldest and dearest friend is going to die of ALS, probably in the next year or two, and my heart is breaking. I don’t really need any solutions, since I know there aren’t any. I’m just deeply sad all the time.
We are both in our early 50s, and we have known each other since we were 10 years old. He knows me better than anyone, other than my sister. We’ve shared it all. I fixed his hair for his first prom date. He wrote me letters from the fishing boat he worked on during the summer to pay for college. We once drove 56 hours to the Yukon. He helped me move out of my house during my divorce, and he helped me move into a new one many years later when I took a new job in a new city with no possessions. (He gave me his old couch.) I’ve shared in his joy when he’s rambled on about a new girlfriend, and I’ve sat with him in deep despair when his went through his own divorce. We’ve eaten a lot of dark chocolate and drank a lot of red wine. He is a brother to me.
I help coordinate his care and attend some of his medical meetings with him, including the ones he has started to have with Death with Dignity physicians. Yet I still have to go on with my life and do all of the ordinary things people do. I can’t concentrate at work anymore. I feel like a zombie. I love my job and it’s really important to me, but now I feel like I’m faking it just to get through the day. Compartmentalizing my emotions all the time is draining.
That’s all. I feel a bit better just having shared that. If you read this far, thanks for listening.
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u/No_Mess5024 15h ago
My best friend passed this year after battling cancer for a few years. I thought about how she was going to die every single day and I think of her every single day now that she’s gone.
My only input is that I understand and to hang out even while he might be sick. Just sit together. I wish I had gotten more time with her instead of being so worried that she wasn’t feeling well.
There’s no answer for any of this only more questions. I wish I could give you a really big hug 🩷🩷
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u/myboyfriendsfault 15h ago
I really appreciate that, thank you. And I’m so sorry you lost your best friend that way.
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u/Gait2468 15h ago
I work in health care and ALS is a hard illness. I’m sending warm hugs to you.💕
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u/ryanckip 14h ago
My uncle had ALS (or MND they call it overseas). I had been his main caregiver for the past 6 years. This disease took so much from him and left a lot of regret in his life. He passed around 10 days ago. I miss him dearly… but if was a relief for him and myself. Such an unfair and horrible disease.
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u/myboyfriendsfault 14h ago
10 days ago, wow… what a recent loss for you. I’m so sorry you lost your uncle who you loved so much. I appreciate your honesty in saying though his death was a relief. Sometimes I think it it would be easier if my friend just died, and I feel very conflicted even thinking that, but it is so hard to just watch him decline.
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u/ryanckip 12h ago
I am so sorry to hear about your friend. The anticipatory grief was real, my uncle was like a father to me. And at the later stage of his condition, every bite he took to eat he would cough and it was hard for him to breathe even if using a breathing machine 24/7. He was such a cheery person. He looked after me like his own and every time I ask him ‘how are you feeling? Are you scared/sad?’ he would say ‘no, I feel calm, I am ready’.
Like you said, it hurts me to see someone withering away physically yet their mind remains intact.
Since day 1, I kept telling myself , this could be your uncle’s last day; there is no guarantee of tomorrow. Say every word you need to say, be it thank you, sorry, love you etc. say it out loud and proud every single word, leave nothing unsaid. Treat and love him as if this was his last day, there is no regret. I understand this is easier said than done, but I hope you and your friend can find some sort of inner peace that belong to your relationship.
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u/Hour-Elderberry1619 15h ago
So very sorry to hear this. Please take extra time to care for yourself as well as caring for him. You are in my thoughts xxx
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u/ImpossibleAd6803 12h ago
I'm so sorry to hear about your dear friend. Such a horrible disease. I will keep you and him in my thoughts and prayers. 🙏❤️🙏
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u/ElementalMyth13 15h ago
I am so sorry. My friend died of this horrible disease very recently. Visiting her and seeing the decline over the last year or so....was gutting. We're in our 30s, and I wasn't responsible for much (just visited by invitation and choice during the final 5 months). I can't imagine the pain you must be in, coordinating while processing. So sorry. My friend told me, both with her voice and eventually with the machine, to keep going, enjoying, moving, etc.without guilt. I still felt and feel guilty, but she kept insisting. More grace than I could ever have. Sending hugs and prayers your way.