Three Story Life: End Game

So it's come to this. Me, a fifth of Jack Honey and a black hole. I snagged the Jack because I parked in the liquor store parking lot to take my brother to the doctor to pee in a plastic cup because we need to know if he still has an infection, after dropping in the mailbox thank you notes to medical personnel who helped, books in the library pick-up bin I haven't read, after starting at the house wondering if I'd remember how to start a pushbutton car.

I didn't remember. Nor did I remember how to shut it off. Three times.

Still not sure if my brother knows our father is dead.

One piece of business done today: I called DTE to change the auto payment from my father's account to mine because I started opening his mail, which feels intrusive, but the letter was dated the day Dad went into the hospital. Halloween. My mother's birthday, begob. Of course, the letter required a 2 day turnaround in their favor. DTE transferred me to Revenue Compliance. I need to send DTE a death certificate. Who pranks someone by switching their auto billing to their own wallet?

I instigated a breakout from Providence Park Hospital for my father. More on this later, but I haven't been 13 years of my life in his care and for his care to have him die in a hospital. The Attending thwarted for ego. Somewhere in my writing future this is the evildoer.

At the end, my siblings stepped up with love. I hope everyone in the house had a moment in the 24 hours Dad was home in bed where he wanted to be.

I was stroking Dad's hands. Keeping him, in his anxiety, from tearing at his oxygen tubing. When holding his hands away wasn't enough I lay on him, my face in his neck. He calmed. Minutes passed. I'm a pain in the ass he said. Well then, I learned from the best I said.

Scott had no moment. He was in the next room, witnessing the mayhem attached to a death: Dad yelling pee and drink, and when he figured we weren't fast enough, using his strobe flashlight to get attention.

I can't escape wondering what I could have done to make this easier on my brother. He lost his grandmother in 1987. She was his best buddy, finest champion, Yahtzee partner. My mother insisted on her being at their house. Did they handle his grief well?  It took our cousin from England to open my eyes in inquiring whether we'd dealt with Scott's loss. Scott then watched his mother at home in hospice care; objected to the police in his mother's bedroom when she died. And now this. The three most important people in his life died in his presence.

When everyone had left the house, Scott and I had dinner. I didn't know what to say to him, what he'd take in, what what. Then I held his face in my hands and I said, "We lost our Dad today. I am sorry for both of us. I want you to know you are loved, we are loved, and you are not alone. Do you understand? We will be okay."

And he said. Okay.

Tonight there's just me and Jack Honey and a black hole.

In the morning there's our life as it is now. Me looking at him for guidance, him looking at me.

The Vexing Quest for Diagnosis

Scott has Down's syndrome, and a mental illness that manifested in the mid-80s. He was hospitalized in a catatonic state, helped at Lafayette Clinic (closed by Engler) and since been variously diagnosed with schizophrenia, depression, obsessive/compulsive disorder, and now Alzheimer's disease. The current psychiatrist told me he "treats all his Down's syndrome patients of his age for Alzheimer's." Okay. Being obsessive myself, I have struggled with getting a more thoughtful diagnosis. One mental health professional asked me "Why do you care? Dementia is dementia." We see commercials for medication Scott used to be on transform into medications for disorders that are being diagnosed more in the United States than anywhere else in the world. Significantly, the USA is the only country that allows direct advertising to consumers for prescription medications. "Ask your doctor." Abilify was a med Scott was taking for schizophrenia. Bristol-Myers Squibb's commercial now tells us to get Abilify as an add-on for bipolar and depression. I've written about Dr. Robert Spitzer who put the word disorder in the manual of psychiatry, thus inundating us with drug companies pushing diagnoses based on inventory of pharmaceuticals. Some have been prosecuted and fined for promoting off-label prescription sales. Our country has seen a 75% rise in diagnosis of bipolar affective disorder, with the highest increase in children, and women over 50. 0.8% of the population will be affected by bipolar I. Why do I know so many people personally who are being medicated for it? Found a pharmaceutical market analysis for US$million for bipolar disorder. Expect more diagnoses, more pharmaceuticals. Meanwhile, I'll still try to help Scott have the best quality of life he deserves. I wish for you and yours a successful journey, too.

My Baby Brother has Alzheimer's Disease

That was hard to type. It is profound to feel. Scott was born with Down's Syndrome, struggled with schizophrenia since his 30s, and now our great heart has a new burden. He is 45 years old. He will bear this with the same gift of spirit that he has lived with all along. He probably doesn't understand what is happening in his brain, and I'm asking the universe to help him never to be afraid. He is a titan of understanding, a generous soul, and I hope we have the humility, courage and divine guidance to learn from my baby brother what we all will need to remember in the years to come.

We will be with you with love, dear Scotty.

Happy Birthday, Baby Brother!

My little brother is 45 years old. He was born with Down's Syndrome. He lives with us, as he's always lived with the family, then just my parents, and now Dad and me.

He began life, as all Down's Syndrome people start out; happy, musical, outgoing, a joy to be around. He graduated from a special school, had a job, and was living in a group home.

Something happened.

In the mid-80s he spent several months in the psychiatric ward, in a semi-comatose state.

My mother did a remarkable job investigating possible causes, seeking help and counseling, finding a medication mix that worked well for her youngest.

My mother died in 1998, and there have been some diagnoses made, some treatment given, some attention paid since then.

For the last five years, once I was involved full time, we've tried to figure out what may help my brother to have a better quality of life. It's difficult to find self-reported issues, as he is only a little communicative.

He's been doctored/medicated for depression. Maybe four different prescriptions so far. He's been diagnosed/medicated for schizophrenia. A couple prescriptions so far.

He's now being medicated - without diagnosis - for Alzheimer's Disease.

But he just came from the dentist today, who reported that he is wearing out his teeth grinding them. His knee is moving nonstop again. And he's biting his nails. He doesn't focus on anything in the room, and he is not interested in his favorite activities. Listening to music, watching Star Trek episodes (original series only, please!) or doing crossword puzzles.

I wonder if what was diagnosed as schizophrenia might have been severe obsessive/compulsive disorder. Maybe the voices in his head weren't other voices, but conversations he heard in another room repeated, sotto voce. A speech repetition tic.

We wonder a lot.

Even with all he's been through, he still smiles when I sing along with the radio in the car, and he can still beat his companion at bowling with his very own monogrammed bowling ball.

I love you, little bro.