Tuesday, April 04, 2023

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.



16 comments:

  1. It is a struggle, one day at a time and do the best you can. It isn't easy when his and your life is turned upside down. As for being a turd...I think we all have shitty days:)

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    1. It is a struggle and I am doing my best of course. But it helps to read about why we react the way we do. There are a lot of good insights in this book.
      LOL on shitty days!

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  2. You are not a turd, you are a human. Sometimes there has to be a pressure release. Finding your way in all of this is not easy. I'd say you've done a remarkable job. I would find the loss of anger very pleasant indeed.

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    1. So often it helps to remind myself that is okay to feel that way. Thanks, I am just a human. I write this so others may know they are not the only ones and it is okay to be a turd...

      Yes even my husband asked his mental health team if they could have figured out how to go into the brain and do that years ago, it would have made his life with PTSD much easier...

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  3. Anonymous12:12 PM

    Thank you for this post. I enjoy all your hiking posts but your insightful writing on navigating caregiving and making time for your mental health help me to accept some of the feelings I have as I care for my husband on Hospice at home. Glad to know feeling like a terrible turd is not unique to me.

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    1. I think that is the most difficult thing to deal with is feeling like a terrible turd. Getting angry when I should be feeling overwhelming compassion and being a good soul.
      I'm learning that feelings like that are absolutely normal while caring for others.
      While we care... we also have our own feelings.
      I wish you all the best and you have all of my support.

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    2. Thank you, Val.

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  4. I did care giving and despite all the encouragement homecare doctors and nurses offered, felt guilty and ineffective a lot. It's a brutal job. You're doing great.

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    1. Thanks, just trying to raise awareness.

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  5. Anonymous6:27 PM

    Don't feel that way! I have been tuned in to you for years and you have been an outstanding caregiver...and most of it has been done without the help of others. It is not easy to keep from being frustrated, and is so important to put yourself in the shoes of the person you are caring for. There comes a time when you have no choice but to roll with it. Lori

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    1. Thanks. But it happens and I go through triumphs and sad times, just the way it is!

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  6. Thinking of you and your husband. It is a difficult road and you are both handling it the best you can. I do not think you are a turd at all, just a human.

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    1. Thank you. I am not a turd really, but it will be a constant as long as we continue down this path. It is just the nature of the human brain and interactions.

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  7. You are too hard on yourself. Caregiving is all consuming and difficult. All one can do, is the best they can. In any situation. It is good to find shared outlets, relatable books etc. You are doing an admirable job keeping up with your great loving care!

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    1. I just feel that others who are caregivers need to know that they are not alone. We all react to stress it just feels bad when it is with a person you are supposed to be supporting.

      :)

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  8. I had to reread this before I could respond. It is not an easy road and I commend you for reading and reevaluating yourself. Relationships are hard enough but having a partner who is so dependent is difficult. I admire your honesty to yourself and to your situation to help you do what you have to do daily. Thoughts and prayers I send your way.

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