Another road trip to Nebraska. This time most of the family was along. There was much that was happening and there is much to process from the trip. Overall it was a fairly good trip.
The reason for the trip was the regional basketball tournament that my son has played in for the past 2 years. This was his 3rd and last tournament. We have always taken my dad to the games. He has always been in a wheel chair. This year many things have changed. The disease is taking its toll on my dad’s body and there was much discussion about what was best, what he would be able to tolerate and what we could actually do. My dad was really looking forward to the outing and was insistent that he was going to go. Gary was firm in telling him that we had to check out all the options!
There was some confusion about what he is really able/capable to do. It was really hard to determine what he was able to do. It took a lot of questions and discussions back and forth with the nursing staff. My dad was insistent that he could walk and that he does it every day. The nurses continually said his legs do not support his weight. So finally I asked the question like this, “My dad says he walks to the Bathroom everyday. How is this possible when you tell me his legs won’t support his body weight?” The answer was very insightful for me – “we use a stand up lifter. It holds him upright and supports his body weight so that he can walk into the bathroom. Without the stand up lifter, he could not walk on his own.”
Light bulbs went on! I was beginning to understand some of my dad’s statements in a whole new light. It gave much insight into what it would take to make it work. The bathroom issues + our really high 12 passenger van made it highly unlikely that it would work out. It came down to Gary’s call since he was going to bear the brunt of the work. Ultimately he decided it just wouldn’t work out – at least not for the first day, since it was going to be a long one. We decided to get what we needed to video tape the game(s) and get them to him to watch.
Dad was very upset. He was not willing to accept no as the answer and began to question everyone he saw. The residents were beginning to gather as we were trying to leave. The look in his eyes as were pulling away to leave was devastating to me. I have always been able to work things out for him and I couldn’t this time. I had let him down in a big way this time. It was very hard to look at my dad. I still see his eyes and the pain of disappointment in them.
Later in the weekend, my brother confirmed that it was the best decision, but it still hurts to think about how hard it was for both he and I. Mom knew that it was hard for me and tried to encourage me – it didn’t help. She is hopeful that what happened might spur him on to work on regaining strength in his legs, but at this point it seems impossible.
Thankfully my dad was at least pleasant when the kids were around. It was hard for them as well. My son wrote a poem, “The Old Grandpa.” He is insightful for a 16-year-old.
“The Old Grandpa” by Caleb Ayers
Playing Frisbee,I remember. Telling Jokes, I remember. Spoiling us rotten, I remember. Being active, I remember. You were young, even though you were old. You could stand on your head, even though you were old. You could grow a garden, even though you were old. You could work, even though you were old.
Now your disease,makes you old. Now your wheelchair, makes you old. Now the care center, makes you old. Now the inactivity, makes you old.
I Miss the Old Grandpa!
I miss him too!