Taking care of Dan

My brother-in-law, Dan, is mentally retarded. Even though he is now 54 years old, Dan will never grow up. Something apparently went wrong when he was born, and he suffered irreversible brain damage. Although he is "high functioning," he will always have a mind that's similar to that of a child, yet lacking a certain emotional perceptiveness that even children possess. When you look at a photo of him from his childhood and compare his expression to how he looks now, despite the passage of 54 years, the look is still the same. Detached. Distant. Blank.

Dan has been living with us since Saturday, October 26, 2002, which was nine years, four months, and 14 days ago as of the time of this writing. The reason I know that date to such perfection is because Dan just told me. He knows dates, and he is always correct.

We always knew that he would eventually become our responsibility, but when my mother-in-law died and it actually happened, it was a huge adjustment for my family. And even though almost 10 years have passed, it can still be a struggle. He tries so hard, and thrives on praise, just like a child. But he can also do things and repeat doing things, despite his and our best efforts, that are extremely frustrating to deal with. The last 10 years have been one long lesson in patience and understanding.

I first met Dan when I started dating his sister, Jane. We went to her house one day and she introduced me to her family. I had no idea that her brother was retarded until he shook my hand. It was the oddest handshake of my life. He took my hand and squeezed the meaty portion of my hand between my thumb and forefinger. I could tell immediately that something was "off" with him.

As I dated Jane, I learned more about Dan. He loves records. It doesn't matter who the artist is, if it's on a record, he will love it just the same. It could be Buddy Guy or Guy Lombardo, Dan can't get enough. He will sit in his room and listen to records for hours on end.

The only type of humor Dan understands is pratfall humor. Basically, if it involves a big stack of dishes crashing and smashing to the floor, or someone slipping and falling, he "gets" it and just laughs until there are tears in his eyes. However, Dan does not understand irony, or sarcasm, or any form of subtle humor. They just don't register with him. Unfortunately for me, I am full of subtle humor (as well as many other things), and sometimes trying to communicate with him via humor is a losing proposition. He doesn't laugh. He just gets puzzled. Sometimes he gets upset, and I have to explain to him that I'm not serious and only joking with him. For example, the last thing that Dan would ever do is to drink beer. Wouldn't happen. Sometimes I'll find Dan digging around in the garage refrigerator, and I'll say to him, "Dan, are you getting into my beer?" And he'll say, "Noooo! I wouldn't get into your beer, Steve. I would get in big trouble!"

Dan pretty much lives in his own world, with a routine that he follows with an almost machine-like perfection and regularity. When he lived with his parents, one of his chores used to be to put the cat in the basement at the end of the day.

One evening when I was dating Jane, we were in the downstairs living room of her house, "necking." It was pretty late, her parents had gone to bed much earlier, and we had lost track of time. Suddenly, Dan was standing over us, holding out a cat just inches from our faces.

"Would you like to pet Barron?" he asked.

Jane and I just looked at each other.

"No, Dan." Jane said. "Just put Barron in the basement and go to bed."

"Yes, Jane." he replied.

I went home soon after that.

I don't think my mother-in-law, Shirley, ever fully accepted the fact that her only son was retarded. She always rejected any idea that he might be slightly autistic. Yet, just to look at him, you'll see that he often stares into space and is obviously not fully connected to what's going on around him. (Although it's surprising sometimes what he does understand.) During one of our last visits together, my mother-in-law and I were talking, when Dan came into the room, asked her a question, and then left.

She looked at him as he was leaving and said to me, "Oh, I think he's getting better, don't you?"

In retrospect I should have been more sensitive, but instead I replied, "In what way?"

That pretty much ended our conversation.

When Shirley died, after the funeral, Jane had to stay in Ohio for a couple of months to deal with the aftermath. Her father had passed away years before, so now it was just her and Dan in the house. She sold the house, auctioned off most of its contents, and had to get rid of most of Dan's huge record collection because there just was not enough room in our little house for all of them and him, too. (Really, there wasn't even enough room for him.)

After her mother's estate was settled, Jane and Dan flew home. Our house was less than 1,000 square feet, and we had no extra bedroom. Our daughter, Stacy, let us put Dan in her room while we began the search for another house. She slept on the sofa until we moved.

Eventually we found another house in McKinney, far closer to where I worked at the time, and with room for all five of us. I had wanted to move closer to work for years, but we probably never would have actually done it if Dan hadn't come into the picture.

We suffered from a certain amount of resentment when we first started having to take care of Dan. I would like to say that we were all completely understanding and welcomed him with smiles and open arms, but that would not be true. It had always been the four of us, and we were happy that way. Now our little family unit was being invaded by someone else. Someone who would require constant guidance and supervision, like a child who would never grow up. It was really stressful, and our lives and routines were being disrupted by circumstances we did not have much control over.

We talked about putting Dan in a group home, but after researching it, we realized it was not an option. The waiting list for group homes in Texas is absurdly long, and the quality of care is questionable and sometimes frighteningly poor. We couldn't subject him to that.

One time, Jane took Dan to be evaluated for assistance by the State of Texas. The woman Jane spoke to had the gall to suggest that Dan was not retarded at all, and just a little "slow." My wife is usually incredibly patient with people, but at this she just blew up.

"My brother IS RETARDED! He has always BEEN RETARDED! What are you TALKING about??!!"

Jane said that the woman sheepishly backed off and agreed that Dan was retarded. Apparently the state can deny help for people based upon how they're evaluated, and this woman was probably under pressure to keep costs under control or something.

So, the whole group home idea was off. We just had a bad feeling about it.

There were times, especially early on, when dealing with Dan could be rough. He would scream like a child at the top of his lungs if we got on him about something that he did, which totally freaked out my kids. I had to warn him a couple of times in no uncertain terms that he was NOT to scare my children. Fortunately, he hasn't screamed in years.

His personal hygiene is not always the best. It's something he's just oblivious about, and we have to constantly get him to wash, shave, brush his hair and the like. One time, we sent him upstairs to do a better job shaving, and he came back downstairs all happy and asked "How do I look?" He has perception problems and doesn't see the world like a "normal" person does. There were big patches of  stubble all over his face. In frustration, I finally did something I swore I never would do. I shaved him myself.

He's got some strange abilities for someone who is limited in other ways, including knowing the day of the week for any date you throw at him. I just had to replace a fluorescent bulb in one of our kitchen lights, and it seemed as if I had just replaced them. Dan told me that I replaced them on Sunday, August 22, 2010. (The company said the bulbs would last seven years. Yeah, right.) If it's your birthday, he knows the exact day of the week you were born. If you need a phone number, Dan knows what it is.

And now, almost 10 years later, Dan is still with us. We've come to accept and finally appreciate his presence. In the "shut up and count your blessings" department, if this had to happen, there are many things about him that we're darn lucky about. Despite his challenges, Dan is a good person. He is sweet. He is caring. He loves to do chores like filling and running the dishwasher, the clothes washer and the dryer, reads appliance repair books for fun, and probably knows more about their internal mechanisms than a trained repairman.

All Dan wants is to be told that he's done a good job. When you do that, he looks like he's about ready to explode with happiness.

Taking care of Dan is not something we would have chosen to do, but we've done it anyway and will continue to do so. He's part of our family. We love him.