Moving Out

[deann-r]

For me it was difficult to find accessible housing and care simultaneously. At one point it prevented me from transferring schools.  In the end I found housing first and had family members filling in until I found adequate staffing.

[ryan-berhar-2]

That makes sense!

[michael-morale]

This is an interesting topic to discuss, even though I was never able to accomplish this. Even though I lived with my parents for the majority of my life, our relationship, even though it would always be a parent and child relationship, grew to more of a coexistence and helping relationship. As my working career was established, my parents and I decided to build a new home closer to where I worked. At that time in my life, I was able to drive myself with the help of a specially modified full-sized Ford van. I was in charge of ergonomics and safety for ExxonMobil Corporation and my responsibilities included everything within our Dallas regional area. Moving closer to my work was a priority in my life, and my parents and I agreed that the house we were going to build would primarily be my responsibility. While my parents lived with me in our new house until their passing, my mother passed away 2008. Approximately 3 years after her passing, my father’s physical condition warranted me to start looking into a caregiver that would not only be my primary caregiver, they would also help him with some of his daily tasks. My father passed away in 2015, so I guess you can say that by him passing away, it was a unique way for me to be thrown out of the nest and it became my time to fly.

For those of you with SMA that have the ability to move out and find someone to help you with your daily life, I applaud you. As we were growing up, I’m sure that many people thought that we would be under the wings of our parents until the day that we died. Little did they know that our lives would carry on and that we would create a life for ourselves.

[kevin-schaefer]

Thanks for sharing Michael. I’m curious to what the process of finding a live-in caregiver was like for you. Did you go with someone you already knew previously or did you find someone through an agency?

[kevin-schaefer]

Thanks for bringing this up Ryan. I think it’s definitely something all of us think about even if we’re independent in other areas of our lives.

Like DeAnn said, accessible housing/apartments are an issue for me. Beyond that, paying for living expenses and covering the costs of full-time caregivers is a logistical challenge even with a full-time occupation. It’s something I want to do eventually as well, but for now I have other things I’m focused on.

What are your plans though? Do you have someone you can live with?

[ryan-berhar-2]

Michael, that is an inspiring story! Thanks for sharing! Kevin, I’m currently still  living with my family four nights a week, and my grandparents three nights a week. I’m hoping to have enough money to move out sometime in 2019. My best friend said he wants to get a place together once his lease expires. There’s 11 months left. I really hope that works out because the timeframe seems like it’ll align, but if not, I’ll try to find another roommate. I think a roommate is key for us, or at least for me. For one, it cuts cost of living in half, but it also provides someone else to help out. Like I don’t necessarily need a caregiver 24/7 if I have a roommate to help me with more minor stuff like moving my hand or getting me a drink. By the way, you shouldn’t have to pay for full-time caregivers. The state should give you some caregiver hours.

[kevin-schaefer]

I get a fair amount from the state, but it’s only so much when I consider all of the hours in a week. I can’t be left alone for too long and be able to work.

Ideally, a roommate who works from home and caregivers who came at different periods in the day would be my preferred situation. Given that I work from home, I need someone there in case my arm gets stuck or something.

I hope it works out for you though. Keep us updated.

[deann-r]

I’ve only gotten stuck a couple times.  Once I went out to get the mail and the ramp was too icy to get back in.  Luckily I always carry my cell phone and was able to call for assistance.  Another happened right after a PCA left.  My swing away joystick got caught on something catching me off guard, swinging away and pinning my arm so I couldn’t call for help.  I did have to wait a few hours that time, but now that I have an Echo I don’t have to worry so much about being stranded.