My mother is having an upper endoscopy and a colonoscopy. It is 8:15 in the morning and I left home at 6:20. Now I'm sitting in a waiting room. Although this is not my first time in this position it hasn't gotten easier. I am not a patient person by nature, but waiting rooms also give my brain free time to freak out. What if the procedure doesn't go smoothly? What if my mother isn't able to express something is wrong? Will this create another speed bump in improving her mobility? Cue 'zooming out' as I call it, and seeing how unpredictable illness is and not knowing if it's going to be okay.
Multiple sclerosis acts in invisible and visible ways, and at no predictable pace. Even it seems like you're doing everything right, setbacks and disease progression persist. My mother was diagnosed in 1986 (symptoms started in 1972 - her journey to diagnosis is another story), six years before I was born. MS has always been a part of my life, but has become ever more so the past few years. I am so aware that my mother is only 60, and this journey will likely go on many more years. It's a continuing realization that seems to start the grief process over and over again. The anxiety doesn't end, it just subsides for a short time. I so wish I had a crystal ball to know the right decisions to make now, and have some idea of what was ahead, instead of seemingly constant surprises being thrown this direction.
I also have trouble with people misunderstanding my role. Although I am 23, I am my mother's POA and primary medical decision maker. Although my mother plays along well, saying "uh huh" and nodding in the right places, sometimes she doesn't actually comprehend what is said, and her recall is not always accurate. Often when I go to her to medical appointments I get the look of "oh that's sweet you're coming with your mom." It doesn't help that I look a little younger than I am. At today's appointment traffic delayed my getting to the clinic, and they started her early. When I came she was about to be put under, and I asked if there was any paperwork that she filled out so I could fact-check it. The receptionist said there wasn't paperwork and they just asked her some questions. He led me back to say hi to her before they put her under. I did and then was led back out to the waiting room. I wish I would have asked questions, but I'm exhausted (5 hours of sleep) and didn't have the energy to - I also don't get angry and raise my voice, I frustrated-cry, and that's embarrassing so I use my energy to hold that in instead. For today's situation, I think I'll just take a more indirect approach (even though I'll think it's a copout) and just see if they tell me anything afterwards, ask mom what they told her, and read the report online when it's posted (can we talk about MyChart and similar sites to view your visit notes and email your doctors? great stuff!) and ask questions from there if I have any.
I understand that very rarely is someone my age doing what I do for my parent. I wouldn't look at a 20-something with their disabled or elderly relative and assume they were the primary caregiver either! I just wish I didn't have to feel like I must prove myself every time I engage with a new provider. I am so not a fan of the stereotype that younger people don't know anything. I know more than I would like to in the realms of MS and health insurance.
...well still waiting and it's after 9:00. Glad that writing this used up some of my time (and I'll need to work on my conclusions for these!) Bye for now.
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