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.

Slippage

Brain Disease.
Doctors call it Alzheimers or Dementia.
It is a brain disease.

The brain is a functional organ that is the hard drive for our bodies.
When the brain misfires it begins to have Bad Sectors and cannot be rebooted or reset. Portions of memory files are misplaced or become corrupt and lost in in the recycle bin to be lost forever. The brain slips a bit like a vinyl record with a bad scratch. It is not fixable. Files keep slipping away and taking memories with them.
The brain eventually forgets how to tell the rest of the body how to function.  The 'hard drive' begins to have terrible issues as time moves on, more functions are lost.

Well at least this is how I have come to understand Dementia. I decided that since I have to live with that ugly word, I would make it less ugly and call it Brain Slippage.
I've had to explain my MIL's condition more than once to a relative. The best thing I could come up with has been the analogy to the computer's hard drive and system of files.

Once the computer's hard drive is so full of gaps and holes, the rest of the functions no longer work.

I just finished reading The Last Ocean, A Journey Through Memory and Forgetting by Nicci Gerrard.

If you have an aging partner or parent, it is a worthy read. We can never truly understand how memories and the brain function, but the author show us how compassion and caring are so important. How we should not let those with Slippage become unseen and forgotten people.

Are we truly made up of our memories? What happens when those memories are no longer? Are we then something or someone else? What defines us?

These are questions the author asks us.

When I visit with my MIL. I see slippage. What was reality a year ago or even just months ago is no longer. She has lost 10 years of memories which is fine because she is perfectly happy recalling her house on the ridge and not the apartment she moved into.
Will she recall her great grandchildren? Probably as they are something that may be more important in her file system.
She knows me and sometimes I am younger in her mind and sometimes I am in the present.

Does it matter to her? No, she is perfectly happy or so she thinks. She asked me to show her a photo of the building she used to live in. She said someone told her she used to live there. I brought it up on my phone and showed it to her.
She shook her head.

Nope. She couldn't picture it at all. Couldn't recall what the apartment looked like either.
But the house on the ridge, do you recall that?

Oh yes!
I asked if it bothered her at all not recalling the apartment. And she looked me straight in the eye and asked me:

Why would it?

Indeed.
Don't try to convince her that she HAS to remember. That is such a big mistake with those that have slippage. Don't force what they cannot recall.

Trying to make her recall things that have drifted away is only an irritant. It does nothing to make her day happier.
Bingo makes her happy.
Painting class makes her happy.
Meals make her happy.

Visits from loved ones make her whole world. It brightens the day by day routine of eat, sleep, nap, get wheeled somewhere, and look out a window or stare at a wall.

I don't mind it when she falls asleep while I am visiting. I sometimes hold her hand just to be with her. Sometimes I wait for a while and then give her a hug and leave.
She loves hugs.

One day her memory of me may slip into the recycle bin and be lost.