u/ENVSmelk

I just discovered this subreddit and I’m glad to have somewhere that I can vent and see similar stories.

My mom has been chronically ill since I was about 10, she had major surgery when I was 14, and I’m now in my mid 20s. She still has many issues with her nervous system and pain even 10+ years after surgery.

Recently we had an unfortunate loss happen in the family, someone who was close to my mom. I was talking to friends and they asked how my mom was (which I’m grateful to have friends who care, don’t get me wrong). I mentioned the loss has been hard for her, and additionally she’s been having a lot of issues with pain management.

Unfortunately the questions that followed really put into perspective how much my friends just don’t understand what it’s like to be a caregiver to a disabled parent from a young age.
Things like:
-“oh is her pain coming back?” (It never left…)
-“what are the doctors saying?” (She doesn’t have specialists following her anymore because she has technically healed from surgery, so it’s just GP doing pain management)
-and imo the worst: “has she tried naturopathic medicine?” (OF COURSE, she’s tried everything that she can get her hands on!!)

I’ve been a caregiver for my mom in various ways and extents for most of my life, but almost always in at least a part time capacity. I was lucky to be able to move away for university and I genuinely believe I had a good childhood regardless of my mom’s disability. I currently live at home (and struggle with my own disabilities) and I try my best to do what I can to help my mom. From grocery shopping to driving to cooking to yard work to getting medications, etc.

It’s a different way of life growing up being a caregiver, and knowing that job will be there until she’s gone. That mindset will continue long after she’s gone. Although I don’t wish for anyone to experience this, I wish my friends understood. It can be isolating being asked questions that I feel are obvious to those who have loved ones with chronic pain/illnesses. In the several years I’ve known these people, I rarely mention my mom’s pain, because what good does that do for anyone? When I say my mom is fine, she’s at HER normal. When I say she’s having a rough time, she’s at a level that they could not comprehend. Unfortunately it makes me angry and frustrated at them, when I am normally not like that.

Stay strong my friends

I know everyone’s experiences are different with this condition but I would like more input on the mental side of things, which I feel is a bit more universal.
My mom went through decompression surgery over 10 years ago when I was in my early teens and you’d never know that prior to surgery she was bedridden 70% of the week. Lately I believe her residual symptoms are acting up a lot worse, or that she’s reached an emotional breaking point. Told me today that she hates her life.
The problem is that my mom is a very tenacious person, she’s always doing something and pays for it later. I’ve been trying to help her by doing things for her or telling her to wait for my dad to help if I can’t do it myself, but I feel bad because she says she feels useless. I tell her we love her regardless of her ability to do things around the house.
I do not feel ashamed that my mom is disabled, if anything her disabilities have helped me. I just want to help her and make her feel less shame around rest.
Have any of you had an experience that particularly helped you? Something that someone said to you or did for you that relieved that shame a little bit?
Physically, I try to evaluate what would be okay for my mom to do and I’m even thinking of rearranging things in the kitchen so they are easier for her to access (ie.less bending down or reaching) so she doesn’t feel so helpless. I do live with my parents currently so it’s pretty easy for me to catch her doing things she shouldn’t, but I don’t want her to feel like she’s burdening us (she’s not of course!)

Thanks in advance, from a daughter that just wants to help her mama <3