Tuesday, December 17, 2019

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.

4 comments:

  1. Just my opinion...No you cannot adjust to him asleep all day and awake at night. You need your sleep in order to function and to take good care of him. Talk to his Doc...it seems strange to me that he has just stopped watching TV when it was his "job" for so long so to speak you know what I mean.
    Uffda. Get him back in Pulmonary Therapy if you can...he must use and strengthen what lung function he has...from what I have learned it only takes a few days to lose lung function...so that should be an ongoing therapy at least three times a week.

    It sounds like he has undergone some major changes...that would worry me. Has he given up completely??

    My heart goes out to you. I know how hard it is to be a caregiver. It sucks. Sometimes it sucks really bad.
    Take a nap...rest up...carry on cause that is what we do.
    You can email me when ever you want!

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    1. We will be looking at his brain MRI done last week specifically to look for changes and to see how the aneurysm is doing. I've talked with the doc everyday this week. Unfortunately I cannot force him no matter what to do certain things.
      Yes, suddenly the TV had no interest for him. Odd.

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  2. My heart goes out to you. I can relate in a much, much smaller way. My husband has been undergoing changes for the past several years. We have been to a lot of physicians and he has had a lot of tests. In March he fell because he was walking backwards (believe it) down the cellar stairs while holding a cabinet door to repair. He wound up w/ a concussion, and if not for his being on Warfarin would have bled to death fairly quickly. Ever since, he has to search for words; memory is very poor; and at times he is taking up a lot of my time and reserves behaving like a child. It has been heartbreaking. There are times he's like my old husband and I almost forget he's changed so much. I can't leave him alone for fear he'll leave the stove on & start a fire or accidentally hurt one of the pets. He shuffles. It's truly sad. I think, like me, you haven't family close by. Maybe not. It's difficult alone - I truly understand. I'm glad you are doing things for yourself and you have your animals to care for. Your love of photography is a great outlet as well. I wish you all the best. Take care.

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    1. I do have a saving grace, my husband would NEVER touch the stove! Yes the shuffling is awful as that affects balance a lot.
      Thank you for stopping by. There are many people in our situation as CareGivers and others seem to prefer not visit or reach out very well. I'm not afraid to get on the phone and have good neighbors that help me in a pinch.

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