Wednesday, August 7, 2019

Deeper in the Weeds

Sometimes I consider doing a post and I wonder if I should.  After all, it seems that lately Tyler has gotten deeper in the weeds with his state of mind and behavior.  That brings out the despair and frustration in me, and then my posts wind up being gloomy and dark.  That isn't the way I want the blog to go.  I want it to be inspiring and helpful.

Then I remember....this IS who we are as caregivers.  We spend more then a fair share of our time wading through the weeds.  And sometimes the more we crawl, the deeper we seem to get.  Thats where we find ourselves at the moment.  Deep weeds.  In the deep weeds its hard to get out of bed, its hard to push through your day trying to look normal and interact as a normal person.  There are times I see an open door and I wonder if anyone would notice if I sprinted to the street and made a break for it.  You become preoccupied with searching and searching and searching every corner of your brain hoping to find an idea or an answer that you hadn't thought of before.  And all you find is the weeds.

I'm in the weeds because Tyler is in the weeds.  In fact, I've never seen Tyler this far into the weeds before.  It started about 6 months ago when his behavior normally shows its typical spring/fall improvement.  Instead of going into the manic months of loud excited speech and laughing at everything he sees and hears, he slipped backward.  To my knowledge nothing had changed.  He wasn't going through any environmental, medical, or other changes that I can pinpoint.  We immediately had CT scans done but they came back normal.  We also had him tested for a UTI to no avail.  By all accounts he is physically healthy, but psychiatric-ally falling apart.  Since Tyler is non-verbal a lot of this is guess-work.  We THINK he could possibly be hallucinating or at least in a confused state.   His balance has gotten bad as well.  Could that be signs of a small stroke?  His interaction with even his closest people has dropped to next to nothing.  He takes no joy in seeing me or the rest of his family.  It almost seems like a really deep depression.  He falls asleep often even while sitting for an activity.  He doesn't watch his true passion - baseball - anymore.  He stands almost all night at home and faces toward the back of the room.  

Has he had a mental breakdown?  Is he so saturated with 25 years of prescription drugs that he has experienced a chemical breakdown?  A stroke?  Scarring from years of seizure activity?  I just don't know.  And not knowing means I can't help fix him.  We tried a minor medicinal change and that seems to have increased the aggression we are seeing.  Add to all of this that we lost our Neurologist of 20+ years (he is a Pediatric Neurologist and was forced by his group to give him up finally at age 27) and now we have to start over with a new one.  I understand the change, we knew it was coming, but the timing is really bad at the moment.  The tests he needs and the suspicions I have are neurological and it will be at least 8 weeks more until I get to see the new one.  I'm trying to move that up but I've been unsuccessful thus far.  

My Dad is also having cancer removal surgery this week.  Don't tell him I put this on the blog or he will be pissed.  I'm pretty close to my dad, although he isn't the easiest man to be close to.  He is just an old, old, old school guy who is getting older school by the year.  He doesn't take it well when he is on the receiving end of treatment and doctors and such.  I generally try to buffer between him and the doctors so he doesn't get aggravated and they aren't tempted to OD him on morphine.  Despite the difficult personality, he loves his kids and grand kids and we love him right back.  Everything I learned about the importance of honesty and integrity I learned from him.  I respect him for that.  I just hope we have more time to appreciate each other, even though we are so different.

So that's the double-whammy.  And what happens to the caregiver who is already in a knockdown drag-out fight for their special person, is that the second whammy comes along as a part of normal life, and its just overwhelming.  Trust me...being a caregiver doesn't make you exempt from "normal" family doesn't make you exempt from money problems...and it doesn't make fate treat you any kinder.  We get all the normal crisis on top of the full-time caregiving crisis.  

Today it feels like a weight squarely across my shoulders.  It has been all I can do to remain on task and be productive.  But I remember the message I put on here time and again...I WILL GET THROUGH THIS.  There is always a light somewhere and if we just keep crawling through the weeds we eventually find it.  

Right now its just weeds....

Be well and God bless.   Tom

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  1. What can I say, God, these are challenging times for you! I don't really know what to say except that your words here - so powerfully authentic, even gut-wrenching, (because they are so real, human and love inspired) are helpful and healing to all who read them. Not even so much because of what you are much as the fact that you want and need to share your deepest, most challenging, real life (in one way or another common to all of us) experiences at this time. The love reflected in your words is so obviously, and again - inspirationally rooted in your heart. I kept thinking, in spite of the deep frustration and even despair expressed in your entry here - well...actually it was more like I kept feeling (and even knowing) that God is your caretaker. Just as Tyler is your teacher - and a spiritual teacher for us all - God, the Universe, Love and the power of life - has allowed you to have this most difficult opportunity to learn life's deepest lessons. Whatever, and however you deem them to be. You guys are so loved and so supported by so many. And, at some deep, deep level - I'm sure Tyler appreciates your constant, and most loving care, concern and efforts. You can only do what you can do, dear friend. The rest is in God's hands. Somehow...this chapter, this challenge, this seeming decline or degeneration is part of the big picture - that we mortals just can't see. You, Robin and Sam are nothing, if not Love In Action. Yes...just keep crawling through these (temporary) weeds - on sliding knee at a time. My deepest thoughts and prayers are always with you. Take care of the caregiver, my friend. Everything - even "this" (all of this - happens for some divine reason. God Bless you dad, as well...and you - doubly - for handling that at the same time so many other frustrating challenges are in front of you. Be yourself - your loving, human self - and let the cartoon characters be "superman." Breathe - slow down - accept you limitations...and keep the faith. Thank you again, on behalf of parents everywhere, for being so loving, so compassionate and so generous to post all that you do on this most inspiring blog. You (and therefore, Tyler) are helping thousands of people, in deep ways you may never hear about...for sure! Love and all blessings to you and your beautiful family, always,
    Tom Newnam

    1. Your feedback is humbling. I'm glad to know that these words, albeit sometimes hard to hear even when I read them back to myself, touches people. Thank you for your amazing friendship.


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