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The Never-Ending Journey of Caring for a Sick Parent

Updated: Aug 25, 2023

Learn about the challenges of finding support, dealing with agoraphobia, and coping with eating disorders, Crohn's disease, and sarcoidosis.
Join me on my journey of caring for my sick parent, navigating the obstacles of caregiving, and dealing with the toll it takes on my mental health.
'Hire support, move her into your home, help her out when you're not working. What about other family?'

If I had a dollar for every time someone recommended these ideas to me, I'd have enough money to not have to worry about the things I worry about.

'Isn't she on ODSP?'

These people must live under rocks. ODSP is $1200, and the average rent is $1600 for a one-bedroom. I don't need to do more math, do I?

There's very little that I wouldn't do for my mom, aside from my kids. She's all I have left for family. And no, that's not because we are black sheep. That's because in 1998, when I was turning 9, I stood by an innocent child and watched as everyone started to die. My grandpa, my grandma, my aunt, uncle, great-grandparents, stepdad. One by one. Just gone. And I wish...oh, how I wish I could have uncovered some weird serial killer at the base of it all. But no. 1998 set me up for the theme of my life. A combination of WTF and 'this just isn't fair.'

I wish I could say we survived despite all that, but we didn't. The mom I knew, my partner in crime, my best friend...was gone. I was looking into the eyes of a woman I didn't know. The anger, the dissociation. That's all that was left.

I started working at age 11, so you'd think I'd have a crazy amount of savings. But I have been financially supporting my mother since 11.

But what about my dad? I told you my stepdad died. I never had a bio father.

I watched my mom claw, scrape, and fight to open her own company when I was 12, only for her 'partner' to rip it all from her when I was 14. And down we fell again. We were the talk of our small town rumor mill.

Despite all this, my mom's true caring nature eventually came back. Sometimes buried in the anger. But she would still give you the shirt off her back.

Caring for my mother is nothing new to me. I dropped out of university to aid her. I quit jobs to take care of her.

A woman frustrated with her hands over her face leaning against a wall.
I'm just tired. I should be raising my kids with the help of my mother.

In 2011, my mom was in a car accident. This accident stole what little of the title of daughter from me. And left me with PSW, OT, housekeeping, and medical appointment driver. I never signed up for this. I didn't choose these lines of work for a reason. At this time, I wanted to own my own Global Pet Foods. And pursue my love of animal nutrition. But the stress of doing it all alone ate me alive.

Hiring someone isn't THAT simple. When your mom has a brain injury and half the time forgot who you were. (I got a look into Alzheimer's, and that is just wrong) so I couldn't put her through that. At the end of the day, she is still human and my mother.

In 2018, my mom's landlords, after 15 years of living in their house, evicted her, leaving me, a recently separated mother of 2, finding her somewhere to live. I'll spare you the details of 2019, but at least I was feeling like a daughter again.

2020...the year no one talks about. The year my world stopped for a whole other reason. Ever listen to someone drown? While standing right in front of you? How about getting daily calls from a parent saying 'Please come, I'm dying' 'What if I don't wake up?' 'I can't breathe'. The year I needed help for my mom, you legally couldn't find it, nor was anyone doing it. That was my life. From August 2020 until January 2021. The desperate fear of my mother caused an anxiety in me that caused a breakdown. But one I truly couldn't have, as not only was I this daughter but also a mom. Of an autistic little boy and a soon-to-be-diagnosed ADHD girl. Who would look at me and go 'We don't want to go to Nana's, you're angry there'. How am I supposed to explain to a 6 and 4-year-old I'm not angry? I'm scared. So I had to start really hiding it the best I could. And I stopped bringing my kids because it scared them. But my daughter is attached to my mom. And was crying for her. I was in the biggest lose-lose battle of my life. I cried every night. And I just wanted help. I wanted rest. I wanted to, well, ironically just breathe for a second.

My mom tried to get help. But she was deemed an attention seeker. Faking. Because no one would listen. Because it wasn't COVID. So it didn't matter.

In January 2021, I got a call from her local hospital; she was signing out AMA (against medical advice). I drove there as fast as I could. Looked the doctor in the eyes and said 'Why should she stay? You guys are doing nothing. She's literally sitting here, so please tell me what are you going to do?' He said, 'We don't know yet.' So we left. It was weird we were followed out. I felt like something had been missed. Or uninformed. That night we were back in the ER. The nurse said 'Well, why would you leave until we knew what the mass was?' MASS!?!?! I'm sorry, what? My heart broke. This was it. I was losing my mom.

We found out she did not have cancer but had sarcoidosis, and we began treatment. And a million medical appointments. In a perfect world, this should've been good news. Not when you are a working individual. I got to spend 2021 and 2022 feeling like a failure due to the number of days I needed to book off.

And I WISH, God do I WISH, that sarcoidosis was the end. But it wasn't. In January 2021, my mom got a different sickness. I was watching her waste away in front of me. And again, no one was listening. Finally, someone did. And we got the diagnosis of Crohn's. The weight loss made sense. So now we were navigating this new issue. But this caused an eating disorder. Her inability to eat is still a huge issue.

After finally convincing my mother, who has agoraphobia, and has been neglected by medical personnel those who were supposed to help her, that we could look into hiring help. Finally, a light at the end of the tunnel. Nope. No, it was not. It was a train. A train full of reasons why I would never be able to get help for my mom.

Reasons and obstacles I faced:

  • Wages: These PSWs wanted more an hour than I make an hour, and I was barely getting by due to taking time off.

  • Time of help: There were NO weekend or after 4 pm help. I was looking for dinner help. We found if my mom had someone to eat with, she ate better.

  • Screening process: Certain agencies wouldn't let me meet them first. It was just we are sending someone out and away you go.

  • Non-animal friendly: My mom has a dog for her seizures and has cats.

Did I look into wage subsidy? I sure did. However, because my mom lives in the country, she didn't qualify for all the wage subsidies if she were in town.

I was met with constant 'She meets all the criteria...but.'

So it all landed on me again. 3.5 hours of driving to help my mom. Once again, my role of daughter was getting ripped from me. And I was taking on all the roles I tried to find help for. But at the end of the day, it just wasn't there. It just didn't work. And the more people 'Try to help,' the more I feel like I'm screaming into the wind. I'm not breaking myself, stretching myself past thin, and living less than paycheck to paycheck to accommodate my mother and her needs. I honestly have no other choice. My life is not my own. Has not been my own since I've been 11. There's never been help. And if there IS help, it is unattainable. So it's on me. I do it. She's my mom. She's all I have left. But there are days where I just want to visit her. And know I get to just be her daughter. Not know there's a list of things when I get there that need to be done. Because she can't do it.

I'm just tired. I should be raising my kids with the help of my mother. But I'm caring for her. While raising two kids. And there's no help.

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