Enough!!

I saw my doctor Monday morning. MY doctor. The one who's looking out for ME. Our total visit could have been twenty minutes but it felt like two hours. She sits in a relaxed manner that immediately puts me at ease. The eye contact is amazing. At first I fear that if I open my mouth to speak I will burst into tears. The next thing I know I'm calmly telling her how sucky my life is and how frustrated I am that I'm failing on multiple levels. I HATE that I sound like I'm whining. She encourages every word. Instead of bursting into tears I relax. I'm not sure why. I find myself telling her things that I'm ashamed to admit; I allow myself to be vulnerable in the presence of someone outside my inner circle. A little voice in the back of my brain points out that she is not judging me. For the first time in months I feel that it's okay to need help. For the first time in 54 years I felt it was okay to be less than whatever I thought I should be and I was safe.

She's not a psyche doc. She's a GP. During her residency I felt she got short shrift because she was “too cute and too bubbly”. Her nurse knew she was good, but nobody—of importance—asks the nurses. On a couple of rare occasions I got to be her nurse when she did pap/pelvics. Once on a fourteen year old girl confused and frightened by the changes in her own body, unsure of her body image. I watched this doctor interact with this frightened girl, mother in the room, easing both of them towards transition. Another time with a frightened woman nearing menopause and all that entails, with family baggage of breast cancer and Alzheimers. Both times she blew me away with the effect she had on the patients—her knowledge, her skill, and when she doesn't know... she researches to beat the band. I watched her more closely than she knows and after three years determined that she is the doctor I want. And she's a blessing to me.

Today is Wednesday and I called her. Rich is hallucinating. It started a few nights ago with just talking in his sleep—not something he's done in the past. He went from zero talking in his sleep to long, one-sided conversations, off and on throughout the night. I wake up several times through the night to his soliloquy, grateful that he seems to be enjoying the encounter. Tuesday he came downstairs, and while I got his breakfast ready, he relaxed, closed his eyes and engaged in conversation with imaginary visitors. I woke him easily, he was slightly confused, and explained who was present that he was talking to. With a bit of effort I managed to convince him that it was just the two of us, and maybe he was dreaming.

Last night was non-stop interaction with his imaginary visitors. Considering the fact that he does not sleep more than two hours without needing to go to the bathroom, it's no wonder the man is suffering from sleep deprivation. When his bladder and bowel are at rest, he wakes up from the attempts to cough up a lung. He works mightily to bring it up, then it finally reaches the back of his throat and gags until it brings up his stomach. He collapses in exhaustion, his eyes are barely closed and he begins to converse with friends, family and strangers as he rides trains, drives trucks and wanders through familiar neighborhoods and foreign buildings. He narrates every step of his adventure, eventually falls silent for the long minutes that haunt me with thoughts and fears of the future. Just when I relax into the stillness, he races from the bed to the bathroom. He returns to bed out of breath and the coughing resumes.

This morning I was getting his breakfast ready when he begins to tell me about the goldfinch that just flew in and is sitting on the shelf above the TV. Again I try to orient him to his surroundings but this time he argues that he's right, and with his eyes wide open he points to the shelf and fails to understand why I can't see the bird. He gets up and moves closer and finally sees there is no bird. He begins to cry.
This is when I decided to call Dr P. I could understand confusion with sleep deprivation, but this was moving beyond the edges of sleep. Maybe it's some of the new meds? We talk and agree to hold the Reglan. The rest of the day continues close to the memory of normal.
Rich goes upstairs to get cleaned up and he wants to do it himself so I busy myself with long over due cleaning. I force myself to believe that we're dealing with sleep deprivation combined with Reglan, and I force myself to find the energy to clean. I vacuum, I scrub, I steam clean, and move furniture and try desperately not to think beyond the moment I'm in.

Hours later Rich comes downstairs, and seems bright and refreshed from his sponge bath and a short nap. His speech is still a bit mumbled, but better, and he's smiling. I fix him a fruit plate and his evening meds. I sit with him and we watch cooking shows on TV. Then he points to the treadmill in the corner and says, “look, pupshun....look at all those people coming in...” He's smiling in their direction, his hands move in gestures of stunted greetings and directions.
Gently I tell him I can't see them, and he looks at me with a mixture of fear and confusion. I'm rubbing his feet and finally he says, “I don't know what's wrong. I keep seeing people...all these people...maybe it's all these meds and once we're done with them I'll be okay again...” He's quiet for a bit and then he realizes that he forgot to shave. It seems to disturb him because he can't understand how he could have forgotten to shave. He seems to clear his thoughts and brightens and says he thinks that when the meds are done and his strength is back, things will be better....For a moment I'm relieved and then he points to the patio door and says, “Look pupshun, there's Billy Poston come from the dead to see me..... Why did you wait so long Billy Poston?” He's telling me to look at Billy's big smile, but I'm trying my best not to dissolve into tears. Billy Poston died years ago from colon cancer. I manage to explain that I can't see Billy Poston. Rich gets very quiet. I try to connect with him and I feel him trying to connect with me. Suddenly he wants to go up to bed. We make it to the top of the stairs and he begins to pant for breath. He says I'll have to help him because he doesn't have his glasses. I tell him he's wearing his glasses, and his fragile shoulders slump a bit more.
I get him into bed and he becomes cheerful and when I tuck his warmed rice pillow under his knees he jokes about being goofy, and tomorrow it will be better, and I gulp tears so that I can verbalize confirmation.

This is WRONG. This is so wrong. He was vibrant, strong and fighting for over 500 days. July 7th he had the chemo-embolism because he trusted those who were advising him. Day by day he deteriorated bit by bit, and day by day my concerns were dismissed. July 16th he was in the ER and I was advised to sign the papers to “let him go”. Day after day after day I have trusted and obeyed and done everything that was asked of me. What do I do now? What can I say now, that I have not said in the past that will get their attention? And I feel guilty for asking Dr P to help me deal with what other doctors have done. A doctor who listens will always bear the burdens of those who don't.

I envy Rich's delusions of friends and visitors and magical places. I wish I could be there with him.

I wish I could be anywhere with him.