gentlegull55 said:Hey everyone...
I don't even know where to start; I could write a novel here...
So, this is basically how it all began—I’ve already lost track of the details, so I’ll just start with how I feel and what my life looks like right now.😢
I'm 23 and live alone with my mom; she has MS. I love her deeply, and she’s really the only one who ever looks out for me. My dad is in the picture too, but they're divorced, and honestly, it's a mess... they both seem to prefer fighting and using me as a middleman to trade insults, rather than actually asking how I am. Then there's my sister, who lives far away and hasn't come to visit in three years. It's a completely dysfunctional family. I enrolled in college back in Los Angeles, but I had to drop out because I had to move back home to take care of Mom. There are colleges nearby too, and I could have made something work here, but I just got lost in my own dreams, ambitions, and the sheer exhaustion of it all. My life doesn't look like anyone else's, and I don't blame her for that, but I am endlessly depressed and my soul just feels sunken. I have nobody. No one to open up to. Nobody in this family actually gives a damn about anyone else. All my dad does is tell me that I'm Mom's hostage and that I'll never be happy because of her. My sister never asks how I am, she just says "I'm thinking of you."
Please don't tell me how much harder it is for her. I wrote a massive thread on MSU about her and how much I admire her strength. I am not spoiled, not even close... I am everything a caregiver can be; I fulfill every single duty without fail. Opportunities to go study abroad come my way, but I can't take them. We have a large extended family, but I can't rely on them for anything—they don't call, they don't care. And my grandmother died from MS when she was only 58, and Mom is 56 now.🙂🙂 🙂 🙂
I feel like it would be easier to just die than to keep living like this. I can't say anything to Mom because it's always about her; she's an incredibly difficult and possessive person, and my relationship is suffering terribly because of it. I have zero choice in anything. I don't have the strength to deal with these constant spasms anymore, I don't have the strength to live in fear, and I just don't have the strength to keep being "strong" for everyone else.
I cry myself to sleep at night because of her. I spend my nights terrified for her, and then I spend more nights crying while wondering how she feels.
I am 100% there for her, through everything, always. But I have no one. I just want my family to care, to ask me a question, to tell me things will get better or that I'll eventually be happy, but I never hear it. Once, when I finally spoke up, my dad used it against us; he attacked Mom, saying I'd end up with a nervous breakdown and that I was killing her. You can't imagine how she reacted to that... In every single moment, I am the one at fault.
I'm at my breaking point. Please, help me...
Oh honey, I am so incredibly sorry you're going through this, but you don't have any other choice: you have to start looking out for yourself.
You say no one cares, but they should, and you need to make that very clear to them—without holding back. You and your sister share equal responsibility for your mother. The fact that she "thinks of you" or that your dad tells you that you're a "hostage" isn't enough. Your dad is just stating the obvious, and your sister is essentially washing her hands of the whole situation. Lay out your perspective to them: tell them that in all of this, there is no room for you, and that you are sacrificing your entire life when you shouldn't have to—especially since there are options. Believe me, there are ways to handle this, from hiring a professional caregiver to finding a facility where Mom can get the specialized care she needs. I don't know what your financial situation is like, but if your father is truly your father, he should step up for your sake, not just hers. Call your sister out and tell her you expect her to step up. Of course, this doesn't mean you'll be totally "free" from your duties toward your mom, but a fair distribution of the load has to happen.
No matter how much like a dead end this feels right now, it actually isn't. You just need a bit of organization and some solid logistics to get things running smoothly again.
Protect yourself wherever you can and get back to working that fax machine. This situation with your mom could drag on for years, and it would be absolute madness to put your entire future on hold until she passes away. That’s not being sane, and honestly, I don't understand why the people around you don't see that.
Crying about how bad things are won't change anything. Sit down and think realistically about what you can actually control. At the Department of Health, there's a Commission for Palliative Care whose main job is ensuring financial assistance for families caring for terminally ill relatives. Look into that. I doubt it's a massive windfall, but when you're broke, every little bit helps. There are also plenty of volunteer organizations, like Hospice, where volunteers step in for a few hours a week to sit with the patient so you can run errands. That kind of relief is vital. Plus, as a terminally ill patient, she has the right to a home health nurse who can visit daily, provided her primary care doctor recommends it.
I'm certain you'll meet many others in the exact same boat, so try to squeeze every bit of useful advice out of those connections. Join an MS support group; there must be plenty of them out there. Through those groups, you can also ask for specific types of help.
The reality is what it is, but you are going to do everything in your power to change it. So, get moving and fight!😘