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Mother in late stages of ALS

Elyse M

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Hello everyone,

I’ve been having a rough time lately so I figured hey, why not try something different and check out a grief message board? 

My mom was diagnosed with ALS last summer and it has progressed very quickly. I live out of state, but have been able to visit her almost every month, minus a three month stretch in winter because her assisted living facility wasn’t allowing visitors due to Covid. We’re not sure exactly how much time she has left, just because of the nature of the disease, but I’ve felt in limbo since 2020 with waiting to hear what’s next. 

I find myself feeling so so sad every day- about her illness (ALS is brutal for those who aren’t familiar), about being far away from my home state, about the pandemic on top of that, work stress, etc. My mom is also mentally ill (BPD) and I have ADHD and have also shown signs of bipolar disorder, which I’m now getting evaluated for. So, all of that’s been an added struggle.

I feel at the end of my rope. I’m in counseling and physically trying to take the best care of myself as I can, but it’s challenging. My husband has definitely been helpful in his own ways, but doesn’t get what I’m going through emotionally (understandable, because he hasn’t been through anything like this). That being said, it makes me feel lonely since I live with and spend the bulk of my time with him. He always offers to listen, but I’m not really getting much back from our conversations (deep convos isn’t really his strong suit). I’ve suggested couples counseling so we can both learn how to navigate this unfamiliar territory together, so that will probably be pretty useful, especially because I’m pretty chaotic with my moods lately.

I know everyone grieves differently and there’s no right or wrong way to do it, and since I’m in the anticipatory stage now, it’s also not exactly the same as after someone passes. 

Anyway, no clue what I was expecting to get out of this post, just thought it’d maybe help a little to share my story. Having a terminally ill parent, even when you’re in your early 30’s, is terrible, and I’m so sorry for anyone who’s had to go through anything similar. 



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Dear Elyse,

Thinking of you and your family during this difficult and sad time.

Please know we are here to listen and stand with you.

It is important to feel supported. I found this website has a lot of good articles and a forum for support. I hope it helps. (((hugs)))


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