Disney and Disability

By Bud Focht

Hi, my name is Bud and I’m going to Disney World!

That is what the Super Bowl MVP is paid a million dollars to say right after the big game ends, so the quote can be used in a television commercial.

No, hard as it may be to believe, I did not win the Super Bowl Most Valuable Player award. The only MVP I ever got was a note from the school nurse telling my parents “More Vitamins, Please.”

This week I HAVE to spend three days and two nights in Orlando for meetings with work. The hotel (I think you may have to call it a resort when a six pack costs $18) and conference rooms are walking distance from Disney World, but it is wasted on me.

Ever since graduating from a South Florida college in the late ‘70s I have longed to get back to the Sunshine State.

But being away from my wife Terry for three days is difficult. Difficult for her and for me.

Luckily my kids have stepped up and will be with her in shifts in the morning to give Terry her meds, during the day to cook her a meal and in the evening to eat and hang out with her.

I am afraid Terry isn’t the most independent person these days.

I had to make a list of things for my son, who instead of making a two-mile commute to his office each morning will be making a 45-minute commute from my house while I am gone, a list reminding him of what his mother can and can no longer do, what she needs help in.

Living with Terry is one thing but when I have to talk to people about her limitations, or if I have to write them down, it gets to me.

Since she was diagnosed with Early Onset Alzheimer’s Disease, Terry has worked less and less hours a week due to her declining cognitive skills.

She currently works one day a week, five hours a day, about three or four times a month.

It is great for her to get out of the house and do something she is still comfortable doing. Most of her responsibilities at work are no longer do-able, so the few things she can still do only take about 20 hours a month to do.

For thirty years Terry has worked a variety of jobs, from YMCA gym instructor to summer camp director, mail career, elementary school teacher/coach/athletics director, to department store clerk and an office worker.  And when the kids were little it was a good thing too. If we didn’t have her additional income it would have been impossible to pay school tuitions.

But now Terry is limited to one half of a work day a week.

A friend of mine suggested that we apply for disability. After all, Terry would still be working 30 hours a week if she hadn’t developed Alzheimer’s.

So I inquired about it through Social Security and they gave me some forms to fill out.

Filling out those forms was extremely hard to do for me. Listing all of the things Terry used to do that she can no longer do was quiet painful.

So many of the questions dealt with physical activities. And physically she is fine. She looks great, tanner than she’s been since she worked the summer sports camps for the Y when the kids were young. Tanner than she’s been since she was a varsity tennis player in college.

Physically she is in much better shape than I am. A running joke in our family is that Terry’s Super Power is that she can walk FOREVER. And for-EV-er is pronounced the way Ham Porter, the round, freckle-faced catcher who coined the phrase “You’re killin’ me Smalls,” said it in the movie The Sandlot. “for EV-er”

Terry looks great. Anytime we see people the next day or so they tell me, “Boy, Terry looked great. You would never know.” She still smiles all the time. Physically she is still healthy and fit.  But things are becoming more and more difficult for her to do on her own.

The Social Security representative who interviewed us said that if Terry does collect disability she can still work on Friday mornings, which would be great. Terry looks forward to it, almost as much as walking.

I wish I could take her walking around Disney World. I seriously thought about buying a second plane ticket and taking Terry with me for the weekend, but logistically it would not work.

The one day I am in meetings all day. Terry could not go to the meetings with me, so she would be stuck in the hotel room all day. There is no way she could find her way from the room to the pool or back, and doing Disney by herself is totally out of the question.

Making those lists of tasks that Terry can no longer perform really brought to light how far she had declined in the last year. It’s sad. It’s scary.

Which brings me back to what I was preaching this time last year. We have to live each day to the fullest. Make the most of each day. We can’t think about the future, just try to enjoy the present.

For me and Terry, that doesn’t mean going to Disney World. It just means being together. The only wasted days we have are days we are not together. The two of us just sitting on the backyard swing listening to music is just as good as walking around EPCOT. (except for the walking part. Terry LOVES to walk)

This weekend when I see EPCOT from my hotel window, I won’t be thinking “I wish I was there.”  I’ll be thinking “I wish I was anywhere, anywhere with Terry.”

For-EV-er

Until next time, spend time with the ones you love.

Bud