So much for “I’ll write 3 times a week.” I don’t know whether to say that was overly hopeful or just plain naïve. Realistically, it was probably a combination of both.
I should have looked first at what I wrote last, I’m not sure what I covered. That said, if I stated “we’re getting into a routine” I was blatantly wrong. It has been 2.5 months now that we have been home. I have finally located a primary care doctor that makes house calls and does not want him dead. We’ve had one outing to the pain mgmt doctor, and telemed appointments with Neurology, Cardiology, Hematology. We had the worst week he’s had since being home when the Neurologist sent in his prescriptions wrong and cut his PBA medicine in half, and his anxiety/calm the brain med by a third, suddenly. I came the closest to having a complete breakdown that I’ve ever had, listening to him scream and shriek day and night for 5 days before I got it through to him that this is NOT what he was taking before. It took another few days for the pharmacy to sort things out with the insurance to be able to fill for a different dosage and then 3-4 days for his body to react. I love this Neurologist but damn…let me send pics of the prescription bottles please if needed to prove what he was taking! For that matter, call the pharmacy. Yes, I know Walgreens puts you on hold for a minimum of 30 minutes before speaking to you. I can’t do anything about that.
Anyhow, that was 3 wks ago and now, with all doctors sorted out, I’ve had my appointment with the SSA, we’ve gotten the necessary paperwork to Medicare so they can speak with me (who do they think was handling things before the sudden permission, and why does my marriage license not cover that???), gotten the prescription assistance restarted, set up the Representative Payee account at the bank…it feels like some progress. Still fiddling with Medicaid, or waiting for them to approve me being able to apply for him rather. Still need to find a lawyer for guardianship. Still need to figure out how I’m going to pay for that. Still need to find basic income to cover the basic bills. We’ll get there. And, at least with his daily care, that routine is starting to sort itself out. For all of this, I am thankful.
Grief snuck up and pounced me this past week, also. I know I need to face that, and so there will be some posts coming. Perhaps it was because his birthday was yesterday, and mine is the end of the month. We aren’t normally big birthday people, but it is still a milestone marker in life and those tend to make me reflective. I know I have to write about St. David’s Main, where the majority of his hospital stay was spent. I want to, before time dulls those memories. They need to be recorded. It was 28 days of vigilance. One doesn’t expect to have to protect the life of the loved one you have there. I find myself wondering how many died that could still be living. How many still are. If it wasn’t for some of the nurses and two of the many doctors, and clinging to that still small voice inside, I don’t know if he’d still be with me. Some of them would say he shouldn’t be. I was told he is a waste of resources, was given outright wrong medical results (verified by other doctors), and as one of them said once we got to the rehab hospital -“I cannot believe what I read in his chart…the things I read, I can only imagine what was said to you!” I told him a few things and he could only shake his head and say, “well he is here now, my patient, and I am in for the long haul. He absolutely can recover, it just will not be fast. Expect 2-3 years.” I told him I understood, and I am here for him too.
He is fussing, so I am going to go check.
The Time We Have Been Given 