My brother Doug stayed with me and Mike this weekend. Doug has Down Syndrome, and he’s been living with one of my sisters for the last two years. She was going away for the weekend and so I said Doug could stay with us in the city.
I was looking forward to it — I hadn’t seen Doug since around Christmas — and thought it would be a lot of fun! But, it turned out to be really stressful and exhausting. Like I mentioned in my previous post, I lived with Doug from Monday through Friday for two months after our dad had a stroke in the fall of 2012. It was a lot of work caring for Doug, but he was in his own home so it made it easier. This weekend, we planned stuff and keep him entertained, but I really feel like I failed.
Even though he’s in his 30s now, Doug is still very much like a child. In fact, he’s still into a lot of the stuff he liked as a kid, like The Muppets. It doesn’t take much to make him happy — Diet Coke, pizza and a movie or TV show he likes will get him excited.
I took the train out to the suburbs to meet him, then we rode the train to Philly together, and then jumped on the subway to my neighborhood. On the train we watched Muppets videos via You Tube on my phone, and he had a huge smile when we were walking down the sidewalk on my block and I pointed out our house. But within minutes, shit hit the fan.
My dog Sassy, who is 14, is really territorial but I thought she’d be okay with Doug. After all, she was with me when I stayed with Doug for those months and they would hang out together.
But she ran down the stairs directly to him and bit his ankle as he sat on the couch. It was a scratch, but it bled a little and he winced in pain when Mike applied peroxide and I put a Band-Aid on him. I felt really, really awful.
Then Mike and I couldn’t find her muzzle. We were both upset and I was being a brat and that fun weekend I’d expected became a stressful, nervewracking mess.
We brought Doug along on our usual Saturday errands, then I took him to see the Sponge Bob movie while Mike stayed home with Sassy so we could both decompress and he could let her out. I think Doug liked the movie. Then that night Mike made a nice meal for us — he and Doug had ahi tuna steaks and black beans and I had marinated tofu — and we watched “Annie” on Netflix.
Sunday, we planned to go bowling so we walked to the bowling alley, but it was closed. We had checked the website before leaving and we even called while standing on the sidewalk in front of the place, but there was no answer. It sucked because Doug seemed excited about bowling, and it was too late to do something else, like the zoo or the aquarium, because we had to catch the train at 3. We walked home and Doug reclaimed his spot on the couch and we watched “The Brady Bunch” until it was time to walk to the subway.
That was pretty much it. I feel bad that we didn’t do more with him. Making things even more complicated, Doug needs a lot of care — he needs coaching while showering and brushing his teeth, and he’s not that great at shaving his own face — but he doesn’t necessarily want to be helped doing these things, so he got grumpy, too. (At home with my sister, he does these things on his own, but he doesn’t really do a very good job; his showers last less than 30 seconds if nobody is there to tell him to wash everything.)
I’m not used to caring for another person, and I failed what’s probably the cardinal rule of mom-ing — always have tissues or napkins on you at all times when you’re out and about, because he’s not the best at blowing his nose.
Still, it felt good to be with him, kind of like slipping on a pair of old, familiar shoes. We grew up together, but I was still old enough to participate in his care when he was little. I used to get up early with him and I’d tie his bib on and situate him in his high chair and feed him. Then I’d lay on my back in the living room and pull my knees back to my ears, and Doug would lay on my feet and I’d give him a ride, placing him in a pile of pillows as he giggled. We’d do that over and over. Sometimes I’d lay with him in bed and we’d hold our eyes very close and blink, tickling each others’ eyes with our eyelashes. And I used to love dressing him up and putting makeup on him. He didn’t like it but was a good sport.
My parents let me hold Doug on the way home from the hospital when he was born. I sat in the back seat of my dad’s VW and held this little baby, who would not stop crying (no seat belts or car seats either!) My mom began taking him to “school” when he was two weeks old and leaving me home alone as a second grader. Since I was a first-time big sister, I thought all babies went to school.
It seemed like everyone was always fussing over him in an overly concerned way, but I assumed it was because he was a baby. When he was about a year old, maybe less, one of my sisters told me Doug has Down Syndrome and explained the chromosomes. Suddenly it all made sense. I don’t know why my parents never told me. The “school” he was attending was an infant stimulation at the Montgomery County Association for Retarded Citizens, where he was working on his motor skills, and my mom was forming friendships with other parents of Downs kids.
My dad always credited my mom for advocating on Doug’s behalf and getting him the interventions he received when he was young. When Doug was a baby, as my dad described it, Doug’s Downs upset my dad so much that he wasn’t able to discuss it without crying.
I don’t see Doug very often anymore, since he began living with my sister. I’m estranged from her (long stupid story) and when I do see him, my communication with her regarding Doug has the whiff of two divorced parents who are discussing visitation arrangements.
I’d like a do-over, though. I want him to stay with me and not get bitten by my dog, participate in fun, active stuff rather than watching movies and television all weekend. And next time, I’ll make sure to have tissues or napkins on me at all times.