Getting married. Having a child. Switching careers. Moving to a different state. What do all of these things have in common? They are big changes to a person’s life. Any monumental change in life usually causes some sort of stress in people’s lives. The anticipation of whatever it is can bring on all sorts of emotions such as excitement, fear, and nervousness. For people living with disabilities, the monumental changes may sometimes look a little different, but we definitely still experience them. Change is hard for everyone—no matter what your circumstances are.

What happens when two major life changes happen at the same time? To put it bluntly, it’s pure chaos! For those who know me personally, they know how hectic the last couple months, actually years, have been for me. I’m not going to go into everything that has happened, but I’ll discuss the two big things that have been going on the last two months. To the average person, these two things probably won’t seem like a big deal, but, in my world, they’re life-changing. By the end of November, my entire life will be totally different than how it was at the beginning of October. Let me explain.

A little back story. Over a year ago, for various reasons, doctors recommended 24-hour care for me. There was no way I would be able to staff that by myself, so we had to find an agency. Really long story, there’s only one agency in my area that could possibly take me on. I had been on their waiting list since last October. We’d check in with them every few months to see where I was on the list. Well, between July and September, my care team (who I hired) basically fell apart. I unexpectedly lost five or six workers starting in June, and it became very apparent that something needed to change. I had a couple of great workers who stuck with me and tried to fill as much as they could, but we just couldn’t continue doing it. I was at my parents most of the time. We contacted the agency, and we finally connected with the right people and found out that that they were ready to take me on. The agency would staff 16 hours to start with, so I had to get a budget amendment approved which was a process in and of itself. I had to let the workers I still had know what was going on. That was a hard thing to do because some of them became good friends, but, thankfully, they understood. The original date the agency had given us ended up not working out for them, so I was at my parents another week while they supposedly straightened everything out.

I’ve transitioned to different care agencies or models a couple times before, so I knew what to expect and how rocky things would probably be. To say that it’s been an adjustment would be a huge understatement. Starting with all new people is hard –period. I don’t like using this limitation often, but, when you aren’t able to communicate verbally, it adds another whole layer. I have step-by-step instructions for everything I need done, but there are many in-the-moment things that can’t be explained in writing. In my case, hands-on training is an absolute must. My mom did a whole day training with two of the workers, and the intention was for those two workers to train others. So far, that hasn’t been working too well, but we’re really trying to give them a chance. At the time of writing this article, I’ve been with them for about three weeks, and my parents have had to come up about 95% of the days for one reason or another. It’s been pretty crazy to say the least, but things have gotten a little better over time.

Having someone with me all day has been an interesting adjustment as well. For years, I was by myself from 9a.m. to 4p.m. I tried to feed myself finger foods for lunch and didn’t use the restroom for about nine hours. Obviously, this was a huge reason why doctors recommended more care. It’s been an adjustment, though. Having someone at my apartment while I work is new to me. I’ll probably write about in detail in another entry, but, as challenging as it is, it’s also so much healthier and safer for me. In time, once things get settled, I hope to be able to go into the community a lot more since someone will be with me all the time. Right now, having an agency is a lot more stress than doing it on my own, but, eventually, it should be a lot less stressful for my family and I. That’s the goal.

I’m also moving in less than two weeks. In a previous entry awhile ago, I explained how I was on a waiting list for a different apartment for over two years. Well, low and behold, we learned that my name was at the top of list again. This time, we were able to do the intake meeting, and, about a week later, I received a call saying that three apartments were open. My parents and I set up a time to look at them. We looked at all three to determine which one would work best. We thought one would work pretty well, so I took the leap and signed the contract. Now, moving is stressful for anyone, but, when you need accommodations, it adds another level! This apartment building has an inner doorway and tenants have to buzz people in using an intercom system. There is an intercom in each unit, but the problem is that I won’t be able to reach it from my bed in the morning to let my caregiver in. We are trying to figure out the best solution to that. An electronic door has to be installed on my actual apartment as well. Among other less major things, it’s a lot to figure out in a short amount of time.  My current apartment still has a lot of issues, and the new place will be much safer and less stressful for me. I’m beyond excited to move, but it’s a lot of stress trying to figure everything out.

Do I wish both major changes wouldn’t coincide with one another? Absolutely. The amount of stress that this has put on my parents is palpable, but that seems to be how life works—everything happens at once. I’m so grateful that my parents are able and willing to help me figure everything out. I’ll write about both of these changes in more detail in upcoming entries.

“Next year will be your year,” friends kept telling me when I confided to all that has been going on the past couple of years. Moving and getting cares figured out have been on top of my personal to-do list for awhile. Due to other things that have happened in my personal life, I won’t be able to say that 2024 has been the greatest year; however, I’m hopeful that this is the start of a great stretch of good things to come for me and my family!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.