Home Elevator 4 Catherine
Donation protected
I want to continue experiencing life post tracheostomy.
On August 17th of this year, which happened to be Don and I’s 14th wedding anniversary, I underwent a tracheostomy. I chose life with my husband and best friend that day, despite the challenges of living with ALS. After my tracheostomy, however, the changes in my lifestyle were much greater than I had anticipated. Before surgery, I could still walk short distances with assistance, use the facilities when nature called and leave my home with the assistance of only one person. Those days are over now, and the adjustment has been a rough one for me. I currently spend 97.1% of my time in bed. Sleeping. Bathing. Being fed. Tobii time. Bathroom. Television. Socializing. Shopping. Paying bills. Reading. Writing. You get the picture. I currently nearly live in bed…but an elevator would change that.
The issue is that our bedroom is upstairs, and it currently takes three people to get me out of bed...one to support my head, one to hold the portable ventilator and tubing and one to lift me. From bed, I am placed in a portable wheelchair with no head support and wheeled to my stairlift. I am then transferred onto the stairlift chair and sent downstairs, all the while feeling like I'm going to fall off at any moment. During this entire trip, I continue to have three people assisting me. At the bottom of the stairs, I am finally transferred into my electric wheelchair.
How will an elevator help me? Installing an elevator would allow me to have access to my electric wheelchair at my bedside for the initial transfer and return transfer. I would have head support immediately and wouldn't need to have someone supporting my head or holding the portable ventilator, as the electric wheelchair allows for both. I would be able to safely travel downstairs and back upstairs without ever having to leave my electric wheelchair. I would only need two people, possibly one on occasion, to get out of bed. The best part is that I will be able to safely experience life again, both in the home and outside in the world, instead of being left behind. A dream come true for me.
Why not just move downstairs? Most importantly, we want downstairs available for our son, Anthony Carbajal, who is also fighting ALS, should he and his wife need to move in with us as his disease progresses. Also, our master bedroom is where we have spent every day of our married lives together. It’s where our hearts are and where we feel most comfortable.
Don and I realize how blessed we are, having more resources and support than most ALS families. It almost seems selfish to have this fundraiser. The thing is, however, living with ALS is crazy expensive for middle class citizens. We have too many resources to qualify for government home care programs and aren't bazillionaires with unlimited cash flow either. We are stuck somewhere in the middle. Don and I currently spend every single discretionary dollar we bring in to pay out-of-pocket for a full-time caretaker for me while Don is at work. Many patients have to declare bankruptcy, get a divorce or choose early death at this very juncture we find ourselves at. Don and I, however, have zero intention of falling into any of these categories and are committed to doing everything in our power to stay above water. So, here we are, reluctantly asking for your help.
Thank you for your love and support of our family. We are blessed beyond measure and appreciate each and every single one of you. Love you all so very much!!!
With much love and gratitude,
Catherine
p.s. #1:
For your viewing pleasure, below you will find our son's viral ALS ice bucket challenge video:
p.s. #2:
Here are some facebook posts I have written:
My ALS story
I changed my mind
A funny and short throwback story...
Support my fight or hit the road
I'm having surgery this month
My mental place of sanctuary
I am responsible...
Would more patients have a tracheostomy...
Finding a purpose
It's decided
True story
Tales of the deformities from falling
Enough with the negativity, Debbie Downers
On August 17th of this year, which happened to be Don and I’s 14th wedding anniversary, I underwent a tracheostomy. I chose life with my husband and best friend that day, despite the challenges of living with ALS. After my tracheostomy, however, the changes in my lifestyle were much greater than I had anticipated. Before surgery, I could still walk short distances with assistance, use the facilities when nature called and leave my home with the assistance of only one person. Those days are over now, and the adjustment has been a rough one for me. I currently spend 97.1% of my time in bed. Sleeping. Bathing. Being fed. Tobii time. Bathroom. Television. Socializing. Shopping. Paying bills. Reading. Writing. You get the picture. I currently nearly live in bed…but an elevator would change that.
The issue is that our bedroom is upstairs, and it currently takes three people to get me out of bed...one to support my head, one to hold the portable ventilator and tubing and one to lift me. From bed, I am placed in a portable wheelchair with no head support and wheeled to my stairlift. I am then transferred onto the stairlift chair and sent downstairs, all the while feeling like I'm going to fall off at any moment. During this entire trip, I continue to have three people assisting me. At the bottom of the stairs, I am finally transferred into my electric wheelchair.
How will an elevator help me? Installing an elevator would allow me to have access to my electric wheelchair at my bedside for the initial transfer and return transfer. I would have head support immediately and wouldn't need to have someone supporting my head or holding the portable ventilator, as the electric wheelchair allows for both. I would be able to safely travel downstairs and back upstairs without ever having to leave my electric wheelchair. I would only need two people, possibly one on occasion, to get out of bed. The best part is that I will be able to safely experience life again, both in the home and outside in the world, instead of being left behind. A dream come true for me.
Why not just move downstairs? Most importantly, we want downstairs available for our son, Anthony Carbajal, who is also fighting ALS, should he and his wife need to move in with us as his disease progresses. Also, our master bedroom is where we have spent every day of our married lives together. It’s where our hearts are and where we feel most comfortable.
Don and I realize how blessed we are, having more resources and support than most ALS families. It almost seems selfish to have this fundraiser. The thing is, however, living with ALS is crazy expensive for middle class citizens. We have too many resources to qualify for government home care programs and aren't bazillionaires with unlimited cash flow either. We are stuck somewhere in the middle. Don and I currently spend every single discretionary dollar we bring in to pay out-of-pocket for a full-time caretaker for me while Don is at work. Many patients have to declare bankruptcy, get a divorce or choose early death at this very juncture we find ourselves at. Don and I, however, have zero intention of falling into any of these categories and are committed to doing everything in our power to stay above water. So, here we are, reluctantly asking for your help.
Thank you for your love and support of our family. We are blessed beyond measure and appreciate each and every single one of you. Love you all so very much!!!
With much love and gratitude,
Catherine
p.s. #1:
For your viewing pleasure, below you will find our son's viral ALS ice bucket challenge video:
p.s. #2:
Here are some facebook posts I have written:
My ALS story
I changed my mind
A funny and short throwback story...
Support my fight or hit the road
I'm having surgery this month
My mental place of sanctuary
I am responsible...
Would more patients have a tracheostomy...
Finding a purpose
It's decided
True story
Tales of the deformities from falling
Enough with the negativity, Debbie Downers
Organizer
Catherine Scott
Organizer
Murrieta, CA
