Tuesday, August 30, 2016

Alzheimer's Disease

Alzheimer's Disease is a degenerative brain disease and the leading cause of dementia.  According to www.alz.org, Alzheimer's Disease was the 6th leading cause of death in the United States in 2015.  I have a personal connection to Alzheimer's Disease and dementia because my father passed away in 2014 from complications brought on by Alzheimer's.

Charlie Johnson was a funny guy, always one to share a joke, whether it was appropriate or not.  He was an amazing athlete, even playing in multiple softball leagues up until his brain wouldn't let him anymore.  He was the smartest man I knew and an amazing pediatric dentist who helped countless children.  He touched so many lives in both his work and through coaching numerous sports teams that my brothers and I played on.  And, he was the best daddy a girl could ask for.

He was 50, and my mom had noticed that he seemed to be a little more forgetful then normal.  When confronted with a question about why he forgot something, he would just chuckle and say, "I have C.R.S. disease!"  CRS stood for Can't Remember Shit.  That's my dad.  Joking about anything and everything.
Charlie the jokster...his belly wasn't quite as big as mine!

Time went by and my mom convinced him to see a doctor.  A cat scan revealed that a large portion of his brain was missing.  It was just black space on the image.  Such a frightening thing to process. How could this happen?  How could part of your brain be GONE?  After doing a lot of research, and thinking about what might have caused this, my dad was given the diagnosis of Chronic Traumatic Encephalopathy (CTE).  It is often associated with boxers or professional football players who have several repeated blows to the head or concussions.  My dad was not a professional athlete, but once my parents sat down and tried to figure out how his brain just disintegrated, they realized that he had an unusual amount of hard hits to the same part of his head over his lifetime.  He was in a few fights growing up and he played football very aggressively in high school.  As an adult, he was hit in the head with a softball, ran into a fence post while trying to catch a fly ball, was accidentally hit with a post hole digger, fell through the ceiling and hit his head on the toilet.  It was pretty amazing how all of these seemingly minor injuries added up to create one very big problem.

The movie, Concussion, with Will Smith really hit home with me.  If you haven't seen it, it's worth renting, even if you don't have a personal connection with brain disorders.  The movie showed a lot of aggression from the men affected with CTE.  That is one thing I am extremely thankful that my dad was never affected by.  He was as loving his last day as he was all of the other days of my life. He definitely got frustrated with his disease.  He would get angry with himself and also with others.  But, he never ever raised a hand, or even raised his voice towards anyone.  Both CTE and Alzheimer's Disease can only be confirmed postmortem.  They have similar symptoms, but was later confirmed in my father's autopsy that he had the neuropathological findings of Alzheimer's.

My mom took care of him for a long time.  Much longer then I would have been able to if I was in her shoes.  Providing the amount of care and supervision that a person with Alzheimer's Disease requires is indescribable.  It's constant, no breaks, no relief.  Much like a toddler, you can't turn your head for a second for fear of what they might do.  When it got to be too much, she reluctantly found a home that had availability.  This was not your usual nursing home though.  She found a man and his wife, who lived in a regular house and rented out the extra bedrooms to patients with dementia.  They took care of them, cooked for them, cleaned them, and were there at the house all day and all night to ensure the patients were safe.  It was amazing!  Our family became very close to the couple taking care of my dad.  I was in awe at their level of patience, taking care of not only 1 person with memory problems, but 3 or 4 at a time!  My mom visited him every single day.  The only time she wouldn't see him was when she was out of town visiting me or my brothers.  The doctors all said that since my dad's body was very healthy, there was a potential for him to live a very long time.  Most people with Alzheimers are much older, so other organs shut down and cause further complications.  But, with an extremely healthy 60 year old, it was a different story.

My parents on their 40th wedding anniversary

However, in 2013, shortly before my youngest brother's wedding, my dad had a stroke.  In a matter of minutes, he went from walking around and telling jokes, to sitting slumped over in a wheelchair, not speaking a word. It was extremely hard to see him in that state.   He started physical therapy, which helped tremendously, but he was never able to walk again, and he only whispered a word here and there.  He lived another year before he aspirated on some food and got pneumonia.  He was not able to recover because his body was extremely weak at the time.  My whole family: mom, brothers and myself were able to be with him when he died.  We all stood around him holding his hands and combing our fingers through is hair.  It was the saddest moment of my life watching my father, who was always so strong and protective, in such a weak and vulnerable state.  Even though it was extremely hard, I would do it again in a heartbeat because to be able to be there with him, letting him know that I love him and that it's ok, was just an amazing gift.

My Dad with his supporters (who were nicknamed Charlie's Angels) at the 
Alzheimer's Arkansas walk to raise money and awareness for the disease.

If you have a family member or loved one that is dealing with Alzheimer's or CTE, my heart goes out to you.  In a way, I felt like my dad died multiple deaths.  I experienced grieving when he no longer said my name, when he was forced to give up his beloved softball games, when he couldn't hold my son, when he couldn't walk or talk anymore, etc.  With a lingering disease like this, it's a long road for everyone involved.  Find some sort of support to help you along.  I was contacted by an old high school friend, who I hadn't talked to in years.  Her father had recently been diagnosed with Alzheimer's and she was reaching out to me because I could relate.  In the beginning, I was happy to think I was helping her deal with her father's diagnosis, but in reality, she was so much more of a support system to me then she probably knows.  Just having someone who truly understands what you are going through means the world.  So, don't go through this alone.  If you don't know anyone personally, there are support groups out there specifically for family members of dementia patients. Sometimes it's just nice to know you're not alone.
 photo Niki Heart Auto signature-2_zpso77bkiti.png

No comments:

Post a Comment

Back to Top