A couple of things happened today that made me realize that we are fortunate in our "caretaking" duties, taking care of our mentally handicapped 51 year old son James, Jr, as compared to what some other parents encounter. I watched a special with Jane Pauley talking about parents taking care of wounded veterans returning from Iraq. I watched as the mothers talked about having to quit their jobs, moving to be near their sons or daughters, and how their lives were put on hold indefinitely, maybe forever.
By this time, it's time for the bus to arrive to take him to Enteprise to the training center (sheltered workshop). He leaves around 8:05 a.m., Mon - Fri. and gets back home around 2:30 p.m. His favorite time at the center is "break" where they go to the dining hall, buy a soft drink, sit around and talk. He has lots of friends there. They break up into small groups and go to their designated classrooms for activities. He likes to go with his supervisor to an elementary school every morning to pick up their hot lunches which are in large serving containers. They have hot lunches every day except when schools are closed and when he takes his lunch, it's always a peanut butter sandwich, an orange cut in half, and 2 choc. chip cookies. That's all he wants.
At least this didn't happen to James after he was grown. We've been caretakers for him all his life. We don't know what it's like not to have him around. We just take it for granted and go about our daily routine as we have done for the past 51 years.
A day in the life of James begins when one of us goes to the bathroom to start his bath water. He doesn't feel the temperature of the water and will burn or scald himself if we don't regulate the water. He wants it to be hot. He likes the tub bath; hates showers. Every couple of days I wash his hair while he's in the tub and makes sure I rinse the shampoo out. If he washes his hair, he uses too much shampoo and doesn't get the soap out. He also likes to get a bath as soon as he finishes dinner every night, and then puts on his pj's "to relax" he tells us.
We have to wash 2 or 3 sets of bed linens every morning, depending on how many times we wake up and change his bed for him. I usually wake up around 2 or 3 and again around 5. Jim sleeps through the night. So I'm the night caretaker. I can do this in my sleep!
James can dress himself and we have a hard time getting him to wear different shirts. He has dozens of shirts and he alternates between two or three favorites; Coke, Special Olympics, Alabama, Auburn and most lately, Relay for Life. He can't handle buttons so he wears knit shirts to work every day. He can't tie his tennis shoes and usually puts his socks on with the heels on top so we have to check that before tying his shoes for him.
While he's getting his bath and getting dressed, I am in the kitchen preparing his breakfast. He wants the same thing every morning: grilled cheese sandwich, a small glass of orange juice to swallow his many pills, and a big glass of 1% milk. He doesn't like for me to have the TV on for the Today Show when he is eating or waiting for the van to come. I have a little one in the kitchen if I want to watch something special, and he even complains about that one being on.
Once he finishes breakfast, his dad takes charge and helps him with grooming. He has to shave him and comb his hair and gives him drink money.
By this time, it's time for the bus to arrive to take him to Enteprise to the training center (sheltered workshop). He leaves around 8:05 a.m., Mon - Fri. and gets back home around 2:30 p.m. His favorite time at the center is "break" where they go to the dining hall, buy a soft drink, sit around and talk. He has lots of friends there. They break up into small groups and go to their designated classrooms for activities. He likes to go with his supervisor to an elementary school every morning to pick up their hot lunches which are in large serving containers. They have hot lunches every day except when schools are closed and when he takes his lunch, it's always a peanut butter sandwich, an orange cut in half, and 2 choc. chip cookies. That's all he wants. They go outside on good days and play basketball or take short walks, or go to the park sometimes. At 2 p.m. they load the buses and come back home. Twice a month on Fri. the men go bowling and he really looks forward to that. The Pilot Club comes once a month and brings refreshments for a birthday party for all who have birthdays that month.
We sometimes wonder if we could keep our sanity if we didn't have this respite time every day.
He can hardly wait to go to work every day and doesn't want to go on vacations or miss a day for some reason.
Once he gets home in the afternoon, we have a snack prepared for him and he is usually very tired after the long ride home on the bus. He sits in his recliner and relaxes for awhile, often watching cartoons or baseball games. That's another thing we can't do without - TV. He has certain programs he watches, especially the Atlanta Braves. His TV is in the den, where we each have computers. So we are with him in sight to take care of his wants and needs.
James has many hobbies, one being his baseball card collection. He can't read or write but he can put his baseball cards in groups according to teams, years, etc. He has a remarkable memory and always reminds us when we have dental or Dr. appointments. He likes to go to the grocery store with me on Sat. He plans all week what we need to buy.
We always make sure that one of us is near James at all times to protect him and to keep him out of mischief. So after 2:30 pm, Jim and I can't do anything together outside. We have to do things together between 8:30 a.m. and 2:30 p.m. We have Monday designated to play golf while James is away. We take turns going on trips or to things at night. There aren't too many things we can take James to as he has a lot of fears of what might happen and is too nervous.
He's so funny and comes out with words and statements that amaze us. He has learned a lot of this from TV. Right now he is really looking forward to going to Bama Jam on June 8th and we have 3 free tickets to the first day when his favorite member of the group "Alabama", Randy Owens, will be performing. But he doesn't come on until 9 P.M. I hope I can stay awake.
This blog is much too long, but I just wanted to put what a typical day is like with James. Most of the time he feels good, despite the fact that he has kidney failure and on a lot of medication and his legs and ankles are so swollen he can't walk very far at the time. He never complains.
While putting together a slide show of pictures of our youngest son Bill for his upcoming 50th birthday party, and looking at old photos of James, I didn't realize how far he has come since he was born. He didn't walk until he was 4 and was so thin his early years. He was so unhappy most of the time for several years and cried a lot.
Right now he is in his bedroom playing Jingle Bells on his record player! He loves Christmas and it lasts all year at our house. I have to stop this blog because it's past time for his evening snack - a peanut butter sandwich which he usually asks for at 9 p.m.
Don't feel sorry for us. We have always taken care of James and it's just part of our daily routine. He brings a lot of joy and entertainment to us and we wouldn't have it any other way.
