Now and Tomorrow….

In 2010 I had a dog die a tragic and profound death.  Within a span of about a week and half or so, she went through the process of her nervous system shutting down, one system at a time, until she could no longer breathe.  In hindsight, I believe that it was a brain stem lesion from chronic infection from a tick disease, though this “shut down” pattern can be seen with brain stem tumors, and can also be strikingly similar to the way parts of the nervous system degenerates in dementia.

What I wish I knew then, in the middle of everything, was that she was in the process of dying.  I spent so much time trying to save her, that I wasn’t able to understand that we had few tomorrows left, until the very last ones.

In the years before 2009, medical issues for my parents were ongoing, but periods of intensity were short term.  We got through them, with time to recover, until the next issue came up.  But in 2009, everything changed, for them, and for me personally too – what followed for me was nothing but loss.  Throughout all of my own issues, the intensity of my parents’ situation continued to increase and place more demands on all of us.  My parents took turns being in and out of hospitals during this time, and I don’t have the words to describe the crazy that that is, as both get very delirious with hospital stays.  To this day, my dad still believes that one hospital was running a daycare on the floor at night, the other hospital was running a gambling operation, and he couldn’t speak his mind at the rehab facility because they would hear him and his life would then be in danger.  After being home and recovering, my mom would later understand (or at least she did) that her delusions, which were more frightening, were not real.  However, my dad still believes that his delusions are true.

Sometimes, we get caught in trying to survive the now to make things better, not realizing that this point in life is not an acute event.  In 2009, my life changed from being surround by a series of sprints, but to a marathon defined by the pace of the decline of my parents.  It took several years for my sister and I to realize that.  It took us awhile to realize that things aren’t going to get better and that they will only get worse – this is the new reality, and we have to better plan for the long-term and pace ourselves.

My Dad remarked the other day that after Mom comes home from the rehab facility she could sit on the front porch and watch him mow the lawn.  There is such sadness in that thought to me, LOL, ignoring the fact that that is something that mom would never enjoy (and would probably kill her allergies).  He still thinks that he is going to get better, rather than get worse, and has a level of denial about mom’s current functionality.  Mom is the woman with nine lives, but that isn’t stopping her obvious decline.  Dad is caught in the Now, not understanding the Tomorrow, or at least trying very hard to not face it.

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So, who’s in charge here?

Mom comes home from the rehab center today – it’s the last day that insurance will authorize.  I guess they call it a Care Center now.  For Mom, it was some much needed rest and recuperation, getting appropriate medication and nutrition, and someone to care for her personal hygiene.  What a huge difference it has made for her.

Dad is her official caretaker, and Dad is of course “in charge”.  He has us three daughters that live locally, and each of us has our own strengths which he could utilize, but he doesn’t, because he can’t.  And I don’t know how much of that “can’t” is actually that he won’t.  We have been blocked at every attempt to help make their lives better, so we are at the point where we must step back, because we can’t do it anymore, and have all been stretched to our limit, and in some cases beyond.

I’m feeling awfully guilty that Mom is returning home to only Dad, I won’t be there today when she is brought home, but Dad has effectively tied our hands.  Parkinson’s is a cruel disease, like so many of the neuro-degenerative diseases out there.  Heck, like so many of the chronic diseases, period.  His feet aren’t the only things that get stuck and can’t move, but the same is true for his mind.  He has always had this tendency, but now it’s front and center, and it is hurting those around him.  Mom suffers uniquely from his incapacities 😦 .   He is unable to provide medication on a proper schedule and to feed regularly, nor provide proper hygiene.  Nor is he willing to bring in help, unless someone does it at no cost to him.   There is no reasoning with him – he cannot process thoughts or emotions, he is stuck, and the place where he is stuck is not a good one.

Mom will come home, she will not be cared for properly, and for my own health and well-being, I have to step back, and all of that leaves me heart sick.

So, who really is in charge here?  It really isn’t Dad, it’s a ship without a captain, heading on a collision course, and the only question is, “When will the fatal collision be that changes everything, forever?”.

Quality vs. Quantity

I was going to title this entry “Choose Life?”,  but being strongly pro-choice, I knew that that didn’t communicate what I was after.

I am the daughter of two octogenarians with dementia, with my mother soon to be 90 years old.  Today marks just over six years since my parents have needed *a lot* of help from myself and my sisters, and roughly eleven total years of increasing medical demands.  I am very tired.

I wish my sister would have started writing the stories along the way years ago, since there is no way that I will be able to recreate the crazy journey that we have been on, but this looks like a good place to write down those nagging thoughts and experiences that will be coming up.

I am a dog lover, and I believe that anyone that has dogs eventually faces the question of quality of life over quantity of life.  I probably think more about these issues with respect to my parents and the moral decisions we’ve had to make than the others.

In 2009, my mother nearly lost her life to Clostridium Difficile.   While she survived, her colon (large intestines) did not – it had to be removed and she was given an ileostomy (so she only has her small intestines).  I believe that I was the only one in the room when this decision was being made that wondered if it was the right one to make, knowing how unwell and unhappy she had been feeling.  Unfortunately, that nagging feeling was correct, she has never forgiven us for saving her life, because the trade-off, for her, was not worth what she had to give up.  Would she have us make that same decision again?  Unequivocally, NO.

When my dad chose to participate in chemotherapy in 2008-09 for Stage IV colon cancer, it came as a surprise to me.  He always swore that he would never go through chemo, having seen what it had done to a friend of his, but his survival instinct is strong .  With a properly chosen supplement and aggressive allopathic treatment, he is now  6 years NED (no evidence of disease).  That’s great news, but he exchanged colon cancer for chemotherapy/anesthesia-induced Parkinson’s disease, which has robbed him of many things.  Would he do this again?  Unequivocally, YES.   He chose life, however altered it made him.

Part of the Parkinson’s is his own version of dementia.  Part of that dementia is a strong desire to remain in charge, of anything he can, and when he can’t, he strikes out in a mean way.  He is this way with all of us, and saves a particular individual meanness for each of us.  Yesterday, in an attempt to make me upset, he told me that I should shoot my dog.  It did make me upset, but probably not for the reasons he thought.

What is life when you alienate all who might have cared for you and you have no joy left?  What is life when it consists of tilting at windmills?

I have no answers, only questions.  I do hope that as I age, I am able to choose to Live Life, rather than just try to survive it.