Adventures in Caregiver Roles

My entire life my mom has always been my health care surrogate. She is the one I turn to when I am sick. Late night/early morning ER visits, overnight hospital stays, bringing me food, helping me shower, etc. This isn’t surprising, I was 9 the first time I had a colonoscopy.

As you get older, the roles people play in your life changes, as they should. New people come in and out of your life. This is something that everyone goes through. However, this is the first time in my life that the caretaker role in my life has drastically shifted. My boyfriend and I recently moved in together. Exciting stuff, right? For me, it’s such a normal milestone, almost too normal. I missed out on a lot of normal milestones growing up, so now it’s time to celebrate the good stuff!

Over the course of our relationship, Kevin has been there for me when I’ve been sick or simply when I wanted to stay in and just watch TV. When I dealt with my ovarian cyst issue earlier this summer (I’m actually still dealing with it because the cysts are back!), I leaned on Kevin more than I had in the past. He dealt with Miami afternoon traffic to get me to the ER (which was way on the other side of town). He stayed with me until I was admitted to a room at 2:00 a.m., even though he had class the following morning at 8:00 a.m., and even though I kept telling him to leave.

Adding a significant other to your list of emergency contacts is a big freaking deal when you have a chronic illness. Listing someone as your health care surrogate is pretty much the highest level of trust. I’m basically saying, I trust you with making decisions regarding my care in case I cannot. It sounds intimidating but I explained to Kevin that if that ever happens the doctors will/should explain everything in a way where you will be able to make decisions for me.

Yes, I am very excited about this new chapter in my life, but at the same time, I was nervous. I wasn’t nervous about Kevin, it was more of a mental block for me. The past year and a half have been amazing, I didn’t want to taint it with the burden of my illness. That’s the best way I can put it in words. I understand the best relationships survive the good and the bad, it’s just easier said than done for me to completely let go of this part of my life and let someone else take control.

He’s been willing since day one to take on more but I wasn’t ready to put that on him yet. Over the past few months, I’ve definitely allowed him to take on more as my caretaker or health care surrogate. Well, one time he just showed up at the hospital even though I told him I was fine, but I was glad he didn’t listen to me and was there. He was right. Don’t tell him I said that.

I’ve had to learn to rely on my mother less and lean on my boyfriend more. You don’t just go cold turkey and completely switch over. It’s a gradual change. Let’s be real, my mom is still going to be there and involved. We’ve even scheduled some of our doctor’s appointments together, typical mother daughter day, right? Haha.

In the mean time, I’m not letting any of my mental blocks get in the way of this new exciting chapter in my life. Yes, my mom isn’t going to be the first person I call now when I need to go to the hospital, but she will still be there whenever I need her. Some things don’t change.

One important thing that MUST happen when your significant other takes on more responsibilities with your health care: you have to have the TALK. Every person who lives with a chronic illness knows what I’m talking about. In the event that you are unable to make decisions regarding your care, what are your wishes? We are talking worst case scenario here, but you need to make people in your lives aware of what you want.

Having an Advanced Directive is a big plus. I have it all written out and signed, it’s super official. Making sure your partner fully understands what you would want along with having it in writing is one of the best things you can do.

I’m still going through this transition so I’m still learning here. The best thing I can say is to just keep your partner in the know as much as possible and let them take on more when it comes to being your health care surrogate.

Right now you can find me trying to find every form that needs to be updated with my new address and emergency contact information.