Tuesday, July 10, 2018

The letter & Appointment

The letter regarding Rich's test results with Neuro-Psychological testing came today.
The letter diagnoses Rich with a major neurocognitive disorder called 'dementia'. The severity is considered mild at this time.

The letter goes on to list the main causes of his diagnosis. In some ways I am glad the list is there and in some ways I find it offensive. In one hand I knew that his health issues are all contributors to his 'Vascular Dementia' however having it printed out in black and white seem to be a shock.

Depression and PTSD are major contributing factors but cerebrovascular disease are the main causes. Yes, I knew that.
The facts are there.

I asked Rich if he wanted to read the letter. He waved a hand at me. "You read it, you can understand it."
So I read it.
The recommendations are fairly straight forward. Exercise, quit chewing tobacco [he is trying when he remembers], eating healthy [we mostly do], speech therapy, language therapy to help practice communication skills, and thinking skills.

Exercise. He preaches it to his mom. And when I ask him to do something physical -- he can't or is it he won't? I think it is *he cannot*. He says that he feels exhausted at all times. He says he can't, he can't do it. Over and over. If I push for him to do something physical he gets angry and goes to bed.
I get tired of pushing and asking him to help.


During the afternoons now, he watches Netflix and sits on the edge of the couch with the volume turned up nearly as high as it can get.
I can't go back and change his lifestyle that lead to this place we are at now. I can only try to deal with it one day at a time.

Yesterday we had an appointment with Neurosurgery. We were nearly late when we arrived at the VA so I hustled us to the floor where we'd seen Neurology last year only to find out we were in the wrong place. Again, we rushed down to clinic B.

After the vitals were taken [his blood pressure was high] we were ushered into an exam room.
The doctor sat down and I innocently asked why we saw him in this clinic rather than the clinic upstairs.
He very pointedly told me that HE was Neurosurgery [emphasis on surgery]. Upstairs was Neurology, they were vastly different.

I explained that we thought we were there because he was supposed to see Neurology for a follow up in one years time. [Emphasis on Neurology]

He batted an eye and then asked Rich if he knew what he was here for. Rich glanced at me and then the doctor. He shrugged. "Because of my brain?"

The doctor launched into his spiel. "The CT scan you had done a few weeks ago show a change in your brain aneurysm. We are here to discuss ways of dealing with that. Did you know you had an aneurysm?"

Rich glanced at me. I answered, "Yes Dr. Kabbani who did the surgery to clear the clots in his brain told us that last year in May of 2017. The neurologist that we saw last year at the VA also reviewed it at the time. The aneurysm is in the Circle of Willis and it is a fusiform aneurysm. We were to follow up with Neurology one year later."

Rich added in his halting aphasia way that he knew the Doctor had to go in more than once to get stuff out and that his thoughts and words were scrambled.

The NeuroSurgeon turned and began typing rapidly. He started to read Rich's history. I pursed my lips. This doctor hadn't done his backround on his patient. My confidence level in him changed. What happened to cause this appointment? Did he note that Rich had a rare aneurysm? One that would be an interesting case to 'fix' surgically? The doctor was a UW Madison doctor, the UW is excellent and is also a teaching hospital.

Finally he turned back to us and said, "I see, last year you saw Dr. ---- in Neurology and he consulted with Neurosurgeon ... Dr. ---- and that doctor said nothing needed to be done at that time."
He frowned and then continued, "I'll put a call into Dr.----- and see what he recommends for this change in your aneurysm."

Rich stared at him and then the doctor pulled out a sheet of paper and explained to Rich what his odd and rare aneurysm looked like and how difficult it could be to 'fix' because it was between two major arteries that fed the brain.

"We may need to do an angiogram or another CT...," he went on, "..and then make some decisions..."

He made a quick exam of Rich and his reflexes then asked a few questions. He then reiterated that he'd let us know what was going on.

I stood and looked the doctor in the eye. "You do understand that my husband has been recently diagnosed with Vascular...." I let my words fall off.
He nodded. "I read that."

"You have read his history and health then right?"

The doctor nodded.

I don't think he really had. I think he saw an opportunity to see and possibly do surgery on a rare case. I think Rich's brain was of interest to him. His demeanor was not compassion for the whole person.
I decided that I didn't like him at all.

We left with no plan of action and we felt as if we'd been broadsided.

On our way home Rich said, "My life stinks. I have no life. I don't think I want that guy inside my head."
Me: Then he won't be.
Him: I mean what if the thing blows up? I mean what if he fixes it and I keep on living like this?
Me: Well he didn't really end up talking surgery, but I wonder what the risks are.
Him: Me too. What if he scrambles me more.
Me: Won't happen. I won't let him in there if those are your wishes.
Him: I'm dying a little at a time anyway. I'm so depressed.
Me: Silence.

Him: Do you suppose I can go to the doctor just ONCE and get some good news?
Me: Silence again.
Him: What next?

Rich reclined the seat and went to sleep while I drove.
I thought about the letter and how we were supposed to push and pull, exercise, OT/PT, mental exercises, ....push push push.

Indeed.
What next?

3 comments:

  1. I am sorry you are going through this, I wish there were some answers for you.

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    Replies
    1. There are no true answers as every person and their brain/health is different. I can only let my husband try and life the rest of his life with some sort of dignity and hopefully no pain at all.

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