Travelers

The book I ordered and started reading:

This book explores what it is like to be a Caregiver and what they face when caring for those with some form of dementia...or the new and improved terms: Cognitive Decline or Neurologically Impaired.
Like any Caregiver, we want to fix our charge. 

We develop behavior that in its own way is problematic. Then the Caregiver feels guilty and struggles with feelings of regret, joy, and frustration all at the same time.

My husband's stroke in 2017 was pretty significant. I won't go into the details, however, he did have to go through months of speech therapy to try and help his aphasia. I learned quickly to understand what he wanted to say when he said something quite opposite. Soon after, he was also diagnosed with Mild Cognitive Impairment Frontotemporal Dementia.

It is easier to say his Brain is Hurt.

When I am frustrated with him, I correct his backwards speech or even repeat it back to him. The surprise on his face when he hears that reminds me that he KNEW he said She instead of He, or In instead of Out. When I am particularly feeling like a turd, I pretend just not to understand him.

Yes, I said feeling like a turd. 

So many moments we have are normal and he catches his 'mistakes'. So I sometimes think ---> he is doing it on purpose.

His stroke also changed his personality. Once he was quick to anger and he could be rather difficult when he was in a mood. He had rages when something went wrong and usually I'd just step back and let him calm down. He wasn't a bad husband at all, just quick with a temper. Most of the time it was directed at inanimate objects. 
I watched him try to beat up his truck one time when it wouldn't start.

After his stroke, this different person emerged. Slow to temper, quicker to smile, and almost unemotional. He stopped taking interest in most things around him. He was always the person that had to be in control of everything. Bam, that ended abruptly.

He even stopped driving. He had no interest in operating a vehicle. 

[He still gives me helpful backseat driving hints when we travel together.]

Sure we have since had some arguments and disagreements. Once I got really angry and pulled a card out of my mother's deck of dirty tricks.

I decided to give him the Silent Treatment, at least until he realized it and asked me 'What's wrong?'

True to his apathy for life and most all things, he never noticed the silent treatment. The only one that suffered was me. I was angry. He forgot what we had argued about.

Truly, I felt like a terrible Turd. My behavior was reprehensible. 

Now I use that behavior and forgetfulness wisely. If we argue about something and he gets upset, or I get upset, I wait. I let the issue drop. Within hours, all is forgotten and we go on about our way.

Well, indeed. 

Our journey will take us as Travelers to places we could not have imagined.

Abulia

That is not a word you will hear often. In fact, until today, I've never even heard of that word.

I found it while looking through some articles on Stroke and Apathy. I was looking things up and I do not really believe in 'looking' or Googling symptoms for information, I do know that reading scholarly articles or NIH articles are helpful.
Sometimes while I am waiting for Rich to get up if I am not at CrossFit, I will do some 'heavy' reading on Strokes, COPD, Mental Health, and other issues that seem front and center in our lives.

While looking up Apathy in Stroke survivors, I stumbled on another word. Abulia.
Now we have been seeing Rich's psychiatric doctor nearly every two weeks. Dr S. really was amazing in helping Rich get out of his last horrible MDD, Major Depression.
However, I think depression is not the only thing affecting him at all. Last year he had an extensive Neurological exam done with two Neurologist and Behavior Specialists.

Here is where Neurology meets Psychology. They actually blend in this case as Rich suffers MDD [Major Depressive Disorder] which was helped earlier this year and we had a much better summer thanks to Dr. S. But blend in all the medial issues along with the Brain Damage and the ongoing progression of Brain Damage and what do we have? Apathy? MDD? PTSD? Brain Slippage?

We still can discuss certain subjects that are near and dear to him. But the year of endless TV watching has now stopped. And I mean stopped cold. In its place is a man who sits at the kitchen table and stares out the window or stares at the kitchen table for very long periods of time without speaking or moving.

I do engage him in as much conversation as possible. I tell him about my workouts, the people I see at CrossFit, and sometimes read him news stories. He listens and responds but mostly he is silent.
Am I not pulling him outside and forcing him [rather unwillingly] to functions? He said his Pulmonary Therapy was okay. But now he can't do it. Can't.

Some days I feel like someone dumped me in a deep pool of water and the harder I swim to get out of the pool ... the further away those pool edges move.
Yesterday I went out after CrossFit to a coffee shop with a pal from CrossFit. We sat and just chatted. She chatted a lot. Her parents are elderly and I think she had a few things that she needed to get off her chest. I have learned to sit and be quiet and not turn around and complain about my issues when someone needs to unload.

I found our hour sitting there watching people walk by on the street and sipping coffee to be extremely relaxing. I dreaded going home to the silent man who would either be in bed or sitting and staring off into nothing.

I feel if I could just push him somehow, I could make him better. But in reality, I can't.

So what is going on? Med changes don't work. Ever since his stroke, Rich reacts violently to most medications. His latest new med for depression was interesting and frightening. He had some rather nasty reactions.

Winter is his worst time of the year anyway. I hate the thought of going through months of MDD again. It is like living in a life sucking hole of blackness.

That is why I work out. That is why I hike. I need to preserve sense of self.

But what of him? What is Abulia?

Apathy, Disinterest, Passivity, Lack of Opinion, Asocial, Extremely quiet or mute, Emotionally remote, Indecisive, ...the list goes on.
Depression meds do not work with Abulia.

It is a neurological/brain issue. I don't know, but I am grasping at straws because, if YOU can name something maybe you can work with it?

Anyway, I messaged Dr. S to ask him about this. Maybe just treating these issues as depression issues isn't the answer. Maybe we are all barking up the wrong tree.
Maybe
just
maybe
there is no good answer because who the heck knows what really is going on in a brain that has damage?

Will I get used to this changing person who sits mutely at the table?
Can I adjust to him sleeping all day and awake most of the night? He sits in the dark and ... well I have no idea what is going on.

We meet with a Neurosurgeon on Thursday to see what the latest MRI of his brain shows.

I'm tired today. But I have so much yet to do.

This should have gone under the blog The Long Road, but I'm putting it here, as this is part of my daily routine as a CareGiver.

The Diagnosis

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.