Some relief

I'm now at the nursing home most days. I'm glad to say my brother seems to be recovering and in better spirits. He doesn't talk, or sign, or communicate in any way but inarticulate drones and bleats, and rudimentary body language, so it's hard to tell. Nevertheless, I'm encouraged by his smiling again. He even laughs occasionally. I'm guessing his pain pills are effective. He's eating again. He swore that off over the weekend giving everybody a scare.

I'm through second guessing certain of my siblings in this matter, though. Anything is possible after he recovers. I'm certain he'll recover, at least to the point of walking with assistance.

Community home goes wrong

Things were going so well for a week. My brother was getting care, and I was carefree. I think the rest of my family were relieved, too.

Then on Tuesday, I hear my brother Joe had something wrong with his foot. My brother can't speak, remember. He was limping. As always, he couldn't tell anybody what was wrong. On Wednesday, it turned out it wasn't his foot, nor was it a light injury. He had a fractured knee. The surgeon reconstructed it with a couple pins and a plate and he said there was no way my brother could have walked with this injury. So, it couldn't have gone down the way the community home's staff say it did. It looks like was caused by a fall against something ridged, like a threshold between rooms. There's no evidence of assault.

Negligence is another matter.

Why was he so poorly supervised? How could have fallen without anybody seeing/hearing it? Why was he not checked thoroughly when the staff realized he had an injury? How could they mistake a knee for a foot injury? Why did they give story that doesn't match the medical evidence?  Why didn't they call an ambulance?

It didn't take long for that arrangement to go terribly wrong. One week. I'll admit I'm shocked. I thought if this wasn't working out we'd get warning signs instead of jumping immediately to grave injury.

If there's something not-so-bad about this, it's that all my family members should be on the same page regarding his care now. The side that pushed facility care has been proved spectacularly wrong. He will be cared for at home once he recovers, and everyone should be working together to get the funding for in-home care.

However, I'm apprehensive about his recovery. He has to be immobilized for six weeks. In a nursing home. Infected bed sores, superbugs, and pneumonia are all a threat now.

If he gets through this, I'm certain he will get the best care.

Relief

I feel such relief. What a discovery! That I think my brother is going to get better care in the community home than he did in my parents house for the last forty years. Maybe that's what I found to be a constant source of anguish, and I buried it. It was a harsh thing to see my parents were badly mismanaging his care, and were in the meantime killing themselves doing it. My mother did her best to make sure Joe didn't go into a home. I think that was a terrible mistake, though the sentiment was understandable. "Homes," institutions, were terrible places when she was growing up. 

I have a lot of writing projects going now. I have two proposals for comedy articles in the works, and if the website doesn't buy them, I'll put them up here. . I have the novel, the Carrie fan fiction, and a short erotica story. At least 40 percent of those are paid, and if they pay off, I guess I'll then call myself semi-pro, which is better than, not-pro-at-all.

I'm not doing anything tomorrow to celebrate the 4th, really. My Dad invited me over, but I declined. I'm staying away from his place as much as I can for the next two weeks. I need the rest and decompression.

For a good night's sleep

Sleeping at my Dad's now feels like being homeless, except with much better weather. To begin with, there are no guest beds. My father and brother sleep downstairs. The downstairs is noisy everywhere at night, with TV's, videos, stereos and everything playing. This is necessary for my brother whose disability demands constant audio-stimulation. Everyone else in the family has gotten used to it. Except me. I wear earplugs all the time there. In old family photos, everybody's hair is messed up, a hint at the noise the family grew up in. They all still have their mussed up hair, but I've gone bald. Probably I should have turned to ear plugs sooner.

My sister provided me with a self-inflating air mattress. An improvement over the 70s model which had to steal the breaths of three people to be serviceable. Problem was where to put it. Downstairs, there was no getting away from the noise, even if there was a place that didn't block the front door or, worse, my Dad's path to the bathroom.

But why do that? There were five bedrooms upstairs.

Because upstairs, every bedroom was stuffed with junk and hadn't been cleaned or dusted since 1994, except the "cat room" where food and litter were provided (and was also right above my brother's room).  My parent's bedroom had been converted to my sister and brother-in-law's  personal family room. It had a couch which was totally unsuitable for sleeping; my parent's old long dresser, which now just took up a lot of space; at TV, computers, computer components, a desk for such, and a coffee table.

All horizontal surfaces were buried under four layers. I knew the filing system. Archeologists of the future would be able to identify the clever purpose of each strata. The layer on top was the currently interesting or slightly used items. This would include at least three remote controls and my brother-in-law's bong. In the middle the slightly used or things of no current but possible future interest. Beneath that, was the trash strata, a very important one given that the room had no receptacle the purpose. The fourth layer was dust, which always sank to the bottom, provided the other three layers were well-maintained. Then you hit the treated wood surface, fire retardant, to no apparent purpose except to poison everyone with hormone-disrupters, in obvious hopes that we wouldn't reproduce.     

I finally moved the couch and the coffee table aside and inflated the twin mattress there. This blocked the door, but I managed to shift things so that I could get out of bed and get out of the room. I turned the fan off, trading cool for quiet. I set up my brother's baby monitor, but put my earplugs in, knowing that I would hear him even with the plugs in my ears.  

I was so tired, I think I fell asleep in a few minutes. It was about midnight. Next thing I knew, I heard my brother over the monitor.  "Auuuauuuuu." It wasn't really a shout, it wasn't really a word. It could have meant a lot of things. "I need help going to the restroom," "Somebody cover my feet," or "Why's it so quiet in here?"

I moved the couch aside, limped downstairs, happy to see that the swelling of my ankle had gone down. I took the long way, the short way involved the spiral staircase, which I wasn't going to try in my drowsy state. I arrived. My brother Joe lay in bed on his belly, his face to the pillow. He raised his arm up to me, wrist first. His way of saying "Hello, thank you." I took his wrist and said, "Wah!" on it. He turned his head and smiled up at me.

I covered his exposed foot with the blanket. I stroked his hair and pat his back. "What do you need, Joe? Do you need to go to the bathroom."

He turned his wrist up, signally he could use my aid getting up. I took him by the hand and helped him sit, something he could do by himself, though with a bit more difficulty. It was just to quell his fear of falling out of bed, though he hadn't done that in years. He wasn't smiling, which was unusual for him.

I asked him, "What's wrong?"

He patted his belly. That didn't mean hunger. That was an upset stomach. "Okay, I'll get you a blue pill."

I got him a sucralfate and Tylenol for any other pain he had. He could have several toothaches and wouldn't be able to communicate it. I hoped not. He probably took for granted pains that normal people never had to contend with every day, with no way to tell anybody, and no way to get treatment. It took decades for my parents to determine that he had acid reflux, and by that time, his esophagus was almost gone.

I gave it to him with milk. He rejects water. It was milk or soda. Everything else was iffy, and I hated both alternatives. But he took it.

Joe had Angelman Syndrome and was now in his fifties. He never learned to speak or sign. His head was small, balding and with totally messed up brown hair. His sensitive eyes, were usually unfocused; they moved slowly and haltingly. He would squint when you asked him if he wanted something or if you put on some music, then he would either smile and rock or shake his head. With rough facial skin and a crooked nose, he had once been a beautiful child. But he drooled. He was unable to groom himself and care for himself. His parents were barely able to do so for themselves. So, his looks deteriorated. His teeth looked large and crooked. He hadn't had any dental care since my father retired.  

Now to my surprise, he got out of bed, and walked with his slanting shuffle, one leg being longer than the other, and began to pull me toward the dining room. That's where the laptop was. He wanted to hear some music off Youtube. There I could find him playlists, currently he preferred either of a R&B/Soul/Gospel duet from the 1960s, Joe & Eddie, or one of TV Theme Songs, starting with Captain Kangaroo's, which always made him laugh and shout. It reminded him of his childhood.  

"No, Joe, we can't do that. It's 5:30 in the morning. Dad needs his sleep." What I left unmentioned was needing mine, too.

He immediately reversed course and limped back to bed. I covered him up, patted his back. He raised his hand, thumb and forefinger held out to pinch my my nose, I said "Honk!" I honked his nose back, patted his back, and made my way back to bed.

And I found I couldn't sleep.   
  

About My Past, pt 2: Angel's Child (long)

For those who don't remember the previous entry in this series, here's the link. This one is just as long.

I was the oldest in the family with three brothers and two sisters. My brother Joe was born two years and a few months after me. Early pictures of him show beautiful child. Yet, you can see that there was something in his eyes that wasn't right. Those pictures were taken during peaceful moments in an otherwise catastrophic time.

From birth, Joe couldn't feed, couldn't suck a nipple correctly, and couldn't keep anything down when he did. As my parents struggled for a year to keep him nourished, doctors were at a loss for a diagnosis. Then, he began to have seizures.