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Living Independently with SMA
Hi everyone! Hope you had a good weekend, and a good holiday for those who celebrate!
It occurred to me this morning that living in Minnesota, arguably one of the coldest states in the U.S., has to be hard on my health. I started dreaming about moving somewhere warm, preferably on the coast so my lungs can benefit from the humid, salty air, and it got me thinking about living independently with SMA.
For those of you who read my column, I’ve written a few articles on my dream of moving out of my parents’ house. It’s still just a dream, but a dream I’ve been considering more and more lately. My parents recently bought a property in the middle of nowhere (literally) with long-term plans of moving there permanently, and as happy as I am for them, I’m pretty sure I would lose my mind in rural Wisconsin, so my mom and I have started looking into 24/7 care. It’s a bit overwhelming, but it’s something I’m looking forward to researching in the new year.
Do any of you live independently? If so, how do you handle finances and caregiving? If not, what would you consider to be the biggest obstacle between you and independent living?
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14 Replies
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I too live in Minnesota and dream of living somewhere warm and tropical. Snow and wheelchairs just don’t mix. Not to mention, dang it’s cold!
Every situation is unique, but I do live independently. Don’t get me wrong, I rely heavily on my support system, but I haven’t lived in my parents house for almost 20 years now. The most difficult part was finding accessible housing and PCA care simultaneously. We ended up buying a house, in their name, and I pay rent equal to the house payment. It’s a small house, so something I can afford.
As far as caregivers, I don’t require round the clock care. I have a PCA overnight, and then for a few hours during the day. One thing I’ve learned is that maybe you don’t need as much care as you might think. Sure, some things may be out of reach for a while, but oh well. I’ve only gotten myself stranded a couple times. As I said, every case is different though. I go through an agency that allows me to find, train and schedule my PCA’s. It can be difficult finding good ones, and personality clashes are inevitable, but so far it’s working for me.
Hope you have success with whatever you decide to do. I might be a little jealous if you end up in a warmer climate. If you have any specific questions on how I do things just ask.
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My mom and I have been brainstorming and we also had the idea of my parents buying a house and letting me pay rent. As for caregiving, I really only need someone around at night, so it sounds like our situations are pretty similar. Where do you live in MN, if you don’t mind me asking?
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I’m in Alexandria. Right in central MN. Tried to transfer college to St. Cloud, but couldn’t line up housing & PCA care simultaneously. Went to SWMSU in Marshall instead. It was pretty accessible for a small town. I lived in an income based apartment called Riverwinds that pretty much catered to disabilities. Wasn’t like assisted living or anything, just more accessible than most places with a roll-in shower, low counters and such. Something like that could be another option to look into. I’m sure a lot of towns might have similar options.
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Wow, that’s awesome! I’m glad you were able to find a place that works for you. I’ll have to look into it!
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For me it isn’t so important to live alone or parents.But it has some advantages to live alone,more independent and other things.It is hard to live for us on country,so I understand Brianna.
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I have a pretty good relationship with my parents so I don’t mind being around them most of the time, but every once in a while I’ll get the itch to pack up and move somewhere else completely. If only that were easier!
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I do not live on my own and am very happy living with my parents for the time being. Caregivers would be a big hurdle for me. I have a trach a this need round the clock care. It seems pointless to live on my own until we come up with a realistic solution for that. Otherwise, my parents would spend half their day at my house, or I’d spend mine at theirs, completely defeating the purpose. But like I said, I’m very happy for now, so we have time to figure that out. Good luck getting everything sorted out! If you need company in warmer weather, count me in!
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Caregiving is such a hassle sometimes! I’m glad your current situation seems to be working for you though. 🙂
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I really want to move out and, like you, to someplace warmer. I live in Bend, Oregon. While it’s probably not as cold as Minnesota, it’s freezing here for most of the year. It’s not possible for me currently, because I don’t make enough money to provide for myself financially. I recently learned that if I make a minimum of $500 a month for about five years, I can qualify for a SSDI cash benefit. Moving out would be much more realistic once that happens. I might get a more lucrative job at some point, which could expedite the process, but as of now, I have a more long-term goal of moving out. Even then, I’ll probably have to stay in Bend, because moving away from my family just doesn’t seem realistic. I’d love to leave Bend at some point in my life and move to a location of my choice, but that’s a dream that may or may not ever happen.
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I’ve heard Oregon is pretty chilly! But yeah, employment is a huge hurdle for me personally. I’m on SSDI right now, which is a big help, but if you make a certain amount of money each month you lose the benefits, which really throws a wrench in things when it comes to job hunting.
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Are you sure you’re on SSDI? Because it isn’t affected by income. SSI is, however.
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Ah, you’re right! I always mix the two up…
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It’s really confusing.
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Halsey you right,when you say half of day your parents spend in your house and half you’ll spend at parents.It would be good to live where is warmer,for example I was always dreaming to live on Florida,always sun and warm,but also Florida has problems with hurricane.So there is not prefect place for living.Usually richest cities are in the north when is colder and we need to live where is economic situation better.And when we go in other city we there don’t know people haven’t there our family.
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