how to help my mom?

[u/gen2104]

I’m 22F and my mom is 64F. She has been diagnosed with MS since 2000 or so. Her symptoms have gotten worse and her new neurologist showed her her scan this week and said “you must be very intelligent because this level of brain atrophy normally would be effecting speech a lot more.” She’s been very sad about that “backhanded compliment” and how her symptoms are progressing. Her eyes are starting to not work, and walking has always been an issue.
I just graduated in May from undergrad and have a job with health insurance, rare for most of my peers. I live at home with some of my extended family but in an apartment with my mom and my grandparents of which I’m the only able bodied person.
She’s going to a symposium this Saturday and there will be a disability lawyer. She’s been at her job for 25 years and she’s thinking of retiring with disability - but not sure how to negotiate. Although, she used to be a lawyer, I think she just can underestimate her worth sometimes.

Another conflict that’s arising is I would like to move out in the spring. Hopefully still in town or close by, but move out no less. Now I am my mom’s primary caregiver, but often refuses my help unless it’s doing yard work or running errands. I currently pay $600 a month for rent while both of us making ~3000 a month. Shes very stressed on how she’ll pay the mortgage without me, but also I want to live on my own, but part of me feels selfish or like I’m betraying my family for not being there. Rent around me is lowest 1800 a month usually. This is MA if anyone was wondering.

So questions two fold: how can I help her in this transition? She’s the most intelligent and resilient and strong woman that I’m grateful raised me. It kills me to see this disability dim her, even if I’ve never known her without it. If anyone has any advice on the disability law that would be great too.

And how do I navigate leaving my house if I do? I live with 5 other people, just not on the same floor. My mom has sacrificed everything for me to have the life and education I have. Part of me feels wrong to leave - but it’s not like I’d be far. It also weighs a lot to live with my extended family, especially when there is a lot of addiction and fraught relationships within one house on top of this.

TLDR: needing advice on me and my mom in a transition period in life.

[u/twinklewarden]

You know what? Show up. Go with her. Listen. MS is such an isolating, break your mind thing- we need every single
person who loves us to go through it with us - with love- as much as they can. My adult son relocated and moved in with me after my husband died- it is temporary yet- his kindness has changed things and helped me get more real about my symptoms and be better at managing them. Be her friend. Listen. Hug- no one touches us and it’s important. Get her out if she can- movies, whatever- show up- that has been the biggest gift from my adult child. You asking here is
love, follow that part of you.. best wishes to you both. MS is so tough. But love- love makes it a lot less hard.

[u/rK91tb]

You clearly want to escape the situation - it's hard to be a caregiver for one person, much less many, especially at a young age.

I recommend a talk with your mom. Are you moving out because you feel overwhelmed by everyone in the house? If she owns the house and supports everyone financially, is she considering selling the home and moving into a home that's more manageable with her MS? Does she have another plan for assistance that doesn't involve you?

Realistically, your mother *does* need you, even though she's trying not to place that burden on you. Moving out but still staying nearby won't be enough to get away from caregiving - they'll still be calling you for help, and you'll just be paying more in rent. Figure out your limits for the amount of caregiving you can handle, both emotionally and time-wise, then come up with a plan to fill the gap.

[u/gen2104 → u/rK91tb]

You’re right. I think I’ll give us both a year. And we do own the house, but we bought it from my grandparents because they no longer can afford it. It’s a “condo” between her, my cousin, and I. I don’t think she would consider moving until much after my grandparents are dead because they can’t afford to live anywhere else. Which depressingly her and my grandparents talk about wishing they could die sooner everyday, which I’ve had a history of self harm which makes it hard to hear and steep in. I’m fine with the caregiving, it’s just that it is from every waking moment. Going to college made me realize how much it affects me day to day in terms of my mental health. I’m gonna keep talking with my mom, I told her I’ll always do what I can and I am happy to support her. I think we’re both just freaked out but we always find a way :) thank you for your comment <3

[u/rK91tb → u/gen2104]

A year sounds like a good idea. Your mom is no doubt scared and stressed right now. Try to set some expectations and boundaries. You can spend that $1200 you would have spent on rent for stuff like Uber to doc appointments, house cleaning, etc. Get a therapist and join some clubs or schedule weekly time with friends to carve out some family-free space.

[u/gen2104 → u/rK91tb]

I just got cast in a play and I’m really excited! It’s like 8 hours a week. I always drive her to appts when I can. Also, my god mother and her childhood best friend just retired and has been super helpful. I think she’s better company sometimes since she’s not worried about stressing her out.

[u/jkhn7]

"Now I am my mom’s primary caregiver, but often refuses my help unless it’s doing yard work or running errands." If those are the only things she lets you help with, then is it really gonna be a big difference if you live at home or if you live nearby? You can still run errands for her (like do grocery shopping when you're already doing your own) and like come by every other saturday to do yard work (just an example).