A month ago we went to the VA hospital in Madison for a Neuro-psychology exam. This is a brain function test of executive functions, thinking, making decisions, planning, understanding, language, perception, and ...well, you get the idea.
It was a two hour test that we did on the 14th of last month. I should say, a two hour test that Rich did last month.
I learned in Physical Therapy-Speech last year that issues a person has pre stroke generally become worse post stroke or as the PT gal said, the issues would be greater in general.
We sat down in the room and I mentally thought I was prepared for hearing the two doctors conclusions.
I wasn't.
Cognitive Disorder, specifically Vascular Dementia -- the doctors were quick to say that Dementia means Brain Changes-- the stigma of hearing "You have Dementia" is about as horrid as hearing the word "Cancer". Perhaps even much worse. Dementia is like saying: You are going to lose your mind.
We have gone down the Cancer Road already so I didn't think anything would actually shock me.
Rich has not just had one stroke. Last year's stroke was just a big bang compared to all the others he has had over the years. In other words, he has had a lot of insidious brain damage over the years.
I had thought perhaps that Rich had Vascular Dementia, but until the words were clearly spoken to me in that room, there was a chance that it wouldn't be that.
I looked over at my husband and wondered how he was taking the news. Hard to tell as he was just listening and watching. The doctors were very good to look us both directly in the eye.
Then they asked a few direct questions. "Val, you are not working correct?" I smiled and said that was correct, I had to quit last year to stay home and take care of Rich.
"We have a treatment plan and some things we believe will be helpful but it is a big commitment."
The question behind the question. 'Will you go running from this room screaming your head off and ditch your husband? Or are you willing to put in time and extreme effort for his therapy and care?'
I replied to them that I was there for the long haul. After all, I'd driven to the UW 5 days a week for over 6 weeks to take Rich to radiation treatments and tried to work on the weekends.
They went over the details of getting appointments with PT, OT, and seeing a Medical Psychologist too. I inquired if that would be that same as the gent we saw during cancer treatments. He was quite helpful. They thought they'd try to schedule us back with him since we had a history already of seeing him during the cancer treatments.
Social workers, OT coming to the house for inspection, testing Rich for safety, OT doing driving tests with Rich...arranging Respite Care.
Discussions of driving, not driving.
And then the bombshell.
"Do you have your POA set up?" the one doctor asks of us.
"Yes," I answer, "we did that quite a while ago."
"Financial and Medical?"
I nodded.
Rich nodded.
They turned and looked at Rich. "We may ask your wife to be your Medical Agent as we are not sure you can make your own health decisions. We will consider Financial POA also."
I could see that Rich was a bit shocked. So I piped up.
"Honey, if they do that, nothing really changes. Right now we are doing all of this together anyway. We sit and do the bills together, we go to appointments together right?"
He nodded. "I could do the checkbook," he said, "but my tremors are so bad. I can't write so Val does it."
There it was, the same thing we went through with his mother. Losing your independence officially. It didn't matter that I've already been doing most of what a Guardian or an Agent for Health/Finances would be doing already. But the 'threat' of having that taken away was downright frightening for him.
The discussion went on to talk about how Speech Therapy would help, meeting with the Med/Psych doctor would help, PT, OT, Social Workers, setting things up.
The goal was to maintain Rich on a plateau provided there wasn't another brain incident or other health incidents.
In one year they would test him again to see if he was able to maintain or...
Well.
Let's just say it out loud. This sort of brain damage doesn't reverse itself.
I'm not asking for sympathy or writing this for shock value.
I may continue writing about this on my other blog called The Long Road.
The Long Road is where I addressed our travels through Cancer.
I hope that I am prepared to travel down this new fork in the road.
If anyone has the strength to travel down that road, it is you. That said, I hope you have support from family and friends to help you. I am glad you have Charlie! Also I hope you can continue to take comfort from the time you spend appreciating nature.
ReplyDeleteVal...you are one of the strongest women I know and you will do everything you can to make sure your husband gets all that he needs. I hope you will have the opportunity to continue hiking, riding and taking pictures. It sounds like you may need some break time. Thank you for sharing this with us, I will start checking out your other blog.
ReplyDeleteDarn it anyways. That was a whole lot of bad news at once. Hopefully everything the Drs have planned for you and Rich will work out.
ReplyDeleteIt is really hard being the person in charge 24/7
I am sorry.