Saturday, February 21, 2009

AT: A Family Affair

After multiple attempts I have had difficulty connecting with families to interview for this assignment, so I decided to interview my mom about the biggest assistive technology challenge in my family, my Grandpa.

Sixty years ago, my grandpa worked for the railroad and serviced the lines above the trains as an electrician. One day while working high on a pole (like a telephone pole), Grandpa slipped and fell. He broke his pelvis, his tibia and fibia in both legs, and his feet were crushed. Despite the initial “Holy Moly!” response of the whole family, his wife and children banded together to help GP through this incident. Grandpa needed a lot of time to recover and he had a lot of operations in the interim. One surgery that baffles me is how his foot/ankles were reconstructed with pins and fused with over 40 pieces of bone. GP was out of commission for a long time while the doctors waited for him to heal.

During this time in history, there was not a lot of assistive technology around unless you made it yourself. Thank goodness GP was a tinkerer and he knew how to adapt and/or create his own assistive technology. We now refer to his strategies as McGuyver-like. You never knew what he could do with some wood, nails and some duct tape.

Throughout Grandpa’s life his support system transitioned from my grandmother to my mom. Grandkids, however, were often involved with the support system too, and in his last six months of life, he had a nurse’s aid too.

There have been many assistive tech tools in GP’s life. My favorite has always been the Easy Lift Chair aka the “Ejecto Chair.” Special buttons push your bottom to a standing position as it has always been hard for GP to get up from a sitting position. When he didn’t have his chair, it was often my job to pull him out. We’d grab each other on the elbows, pull and smile. I liked that job.

With regards to the other AT in his life, GP adapted or fashioned tools out of anything he possibly could. He used to have a block of wood on a string that he’d keep in his truck, to give him a step up. I also remember how he would hook his cane around the steering wheel to help pull himself into the front passenger seat of the car or how he fashioned a large square piece of plastic on the seat so he could easily swivel his legs into the vehicle for a nice ride along the beach.

For a while, GP was walking independently until his knees started to get bad. He had them replaced but physical therapy was a challenge for a man who waddled. His ankles were fused at 90 degrees, so the whole point and flex, or walk/run exercises were out of the question. So, we just adapted. He used two canes and walked like a spider for a large part of his life. Ultimately, he transitioned to a walker then to a wheelchair. Sometimes he used all three and the tools were strategically placed all throughout his home. He lived this way, independently, for a very long time.

After some complications, it wasn’t until recently that GP needed to officially order what he finally called assistive technology for his home. This included a hospital bed, hoya lift, slide board and handicapped accessible van. The training on any or all of these things was slim and none. In our case, it was a lot of practice and trial and error. In our family, that’s how we roll. This time, it was GP saying, “Holy Moly!” especially on the Hoya Lift. But he delegated, called out commands and we assisted.

When I asked my mom if there was anything she’d change, she would have loved more electric assistive tech instead of the manual, but she recognizes that nothing is without faults. There was one time where the power went out and GP was trapped in his electric chair and she recalled that it wasn’t so much fun trying to get him out. Shortly thereafter, McGuyver set up a battery pack back up on the chair so it would never happen again.

As a family, we’ve just learned to adapt with GP and that has always been the way.

Learning about or creating new devices actually brought us together more as a family, and never really stopped us from doing anything, including family road trips.

Our biggest challenges and frustrations came this year when GP got sick. Grumpus was still delegating and adapting, but the time spent with him being sick took a real toll on my mother, who was his main caregiver. Although she tried to remain upbeat, chronic sorrow definitely invaded her life and ours. Adapting wasn’t so easy anymore.

My Grandpa passed away in January and although I miss him very much, it was his time to go. I am thankful for all that he taught me about assistive technology and duct tape and all the other McGuyver strategies in between. Sometimes for a family, AT isn’t always about the SETT way you do things, but how you can just adapt things that need adapting.


Mrs.A said...

I am sorry to hear about your loss, sounds like your grandpa has given you great memories and a passion to help others with assistive technologies. I am sure your experiences with him, will guide you in your as you help children who need assistive technologies.

Paul Hamilton said...

Christine. Thanks for sharing these incredible memories about your amazing family. It wasn't just your grandfather who was a person with great depth of character.

I wonder how often we might be better served by custom made alternatives to the very expensive commercial products.