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Messed Up Schedule
As some of you know, I’m usually at my grandma’s house three nights a week. Due to some family issues, my two very young cousins have also been there for a while, and one caught the flu. I can’t be at my Gma’s for the time being. These complications have totally messed up not just my schedule, but everyone else’s for that matter. It’s times like these when I wish I had my own house and caregivers to escape the drama and make things easier on my family. Can anyone relate to this?
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5 Replies
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Unfortunately we are at the mercy of others no matter your situation. My weekend PCA had a terrible cold and worked anyway. What could I do? She showed up for her shift all croaky and sniffling. At least she’s good about handwashing, but makes me cringe. My new PCA called out today because her son is sick and my PCA with the cold is filling in (I’ve already been exposed.) Ugh! Drama is just par for the course, but I feel your frustration. Are you still working on getting extra caregivers? Even though it doesn’t exclude you from drama it’s nice to be able to spread the workload to avoid burnout.
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Yes, and it seems everyone is on board with it, which is huge progress. Hopefully everything settles down around here and we can move forward with the plan.
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That’s great man! Those conversations can be tough, but it’s good that your parents and grandparents are on board with the idea of getting outside help. Keep us updated, and let us know if you need help finding agencies or anything.
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I’m sorry your cousins are sick, and I do hope you continue to avoid everything that’s going around. It’s a sucky time of the year.
First off, absolutely all of us can relate. You know I’ve written extensively on this subject here and in my column. I have caregivers, and I still feel guilty when I have to rely on my parents for something. That feeling never goes away.
Second, when it got to a point where it was becoming too much for my parents to take care of me full-time, I started having serious conversations with them about getting outside help. This is what led to me acquiring caregivers and gaining a lot more independence. I still live with my parents, but I have my own space and caregivers throughout the week.
Third, I think it’s important to give some serious thought about what kind of independence you want. I’m not saying you can’t get your own place, but if that’s what you want you’re going to have to work your ass off. Not only will you have to figure out how to pay rent/mortgage, but you’ll also have to manage your care plan on your own. Again, it’s possible, and I know a lot of people with SMA who live independently, but it doesn’t just happen overnight.
Lastly, what are you doing right now to move toward a more independent lifestyle? If this is something you really want, what are you doing TODAY to make it happen? We’ve had many conversations about this topic over the last few years, and myself and everyone here are here to offer support and advice. But it’s up to you to get the ball rolling.
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Like DeAnn said, the drama and frustrations are pretty much always going to be there. I too wanted nothing more than to be living away from my parents when I was in college, but ultimately I discovered a different path toward independence. Whatever you choose, it takes a ton of effort, but it’s worth it. This is actually the subject of my column tomorrow.
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