Reality bites!

My intent was to go back and  attempt a cohesive story from the beginning of my dance with Damn Dementia, however there are things that happen that I simply must get written. Real, raw emotion begs to find a place to be released.  Here seems to be a place of safety for me. A place to express my frustration, share my moments of exasperation and perhaps keep a few strands of sanity.

In February I took my Dad to Oklahoma for a doctor appointment, he stayed a couple of weeks them I went back to pick him up.  Another trip at the end of March for another appointment and Mom's class reunion, while I was there we buried my best friend from high school.  I got to attend her funeral by myself which was a blessing but seeing my Mom so distraught she was emotionally unable to attend was hard, Dad on the other hand couldn't seem to remember who died-explaining time after time who died was excruciating. The next weekend was another trip to visit Dads sister in the hospital.  This weekend was Dad's class reunion-another trip. Somehow I haven't had a chance to grieve. Trying to help Dad cope with yet another doctor giving a blow to his psyche has sucked.

Imagine if you will being with your dad on 5 doctor visits where he's told not to drive and not to do taxes.  Him shaking his head because "I've got enough sense..." as the doctors explain again and again that the type if dementia he stuffs from doesn't allow him to recognize his deficits. Each time the frustration, the defeat, the disbelief as his head hangs in shock.  My heart breaks each and every time! I have shed more tears over his dementia than over mom's because she understands her limitations.

Dad has been angry with me, accusing me of being the reason he can't drive.  He often raises his voice at me. His disease causes things to come from his mouth in his voice that my dad would never say to me.  I can't count the number of times I've literally collapsed in tears while hiding in the bathroom or my bedroom.

I wanted to make this weekend special for my parents. They had a great grandson born almost two months ago, I've been working to coordinate a time to get them over to meet him.  Mom has been working hard creating some special things for him.  I headed over Friday morning to get them in the car to leave.  We'd no sooner pulled out of the driveway when Dad began grumbling.  The entire trip he griped and complained about not being allowed to drive. He even told me that it was "no fun to be a passenger." It was funny to glance in my rear view mirror and see his eyes open, if I tried to speak to him he'd squeeze them closed as if he were asleep. When he did respond to us it was usually a "hrumph!"

On the drive home-three days later-we stopped for lunch. We got back in the car and he was just as grumpy; I just couldn't stand it any more. I gave Dad my cheesiest smile then began to sing, "if you're happy and you know it say.....hrumph!" And he did! He just couldn't stop himself. Mom and I burst into laughter and we finally caught a smile on his face.  I told him that for the rest of the drive any time I heard him "hrumph" I would consider it as him telling me he's happy!

He began reminiscing, telling about the group of friends that had started an investment club about 30 years ago.  Dad was sharing names of people, telling me about meetings they would go to together and how valuable he was as the treasurer.  I really enjoyed listening to him share stories about this time in his life for almost twenty minutes.  He finished and the car grew quiet.  The little girl in me caught up in the excitement of his lively stories and I eagerly asked, "Dad tell me a story about me, a memory from when I was a kid."

He looked at me, his eyes twinkled a bit as he smiled and said, "Well, I guess I've known you your entire life...haven't I?" I nodded and tears flooded my eyes and dripped down my cheeks. What on earth made me think that he's actually come up with a memory to share with me? 

For way too long, this has been my normal.  Dad mad at me.  Excited to see everyone except me.  Reminiscing and sharing about other people in his life but nothing for me.  I arrived home emotionally worn, I loathe damn dementia,  I've talked to God, yelled at God and really tried to listen in hopes of finding why.  I believe as long as a person is living that God has a plan for their life-something they are meant to do or something we are meant to learn from them. What then is the plan for my parents slowly slipping away, losing bits and pieces of them at a time.  I feel like I grieve for the little pieces I've lost but their bodies are still here.  Where's my answer God?  What am I supposed to learn?  I'm tired.

Fourth Grade

I remember my teacher.
I remember my friends.
I remember that I never won the Hershey chocolate bar given weekly for the two cleanest desks.
I remember being the first class in the underground building at West elementary in Weatherford.
I remember being told my Grandma had leukemia.

Grandma was diagnosed with leukemia and I was the only child left at home. I learned first hand exactly what it meant to be a caregiver, of course that wasn't the word that was used.

Fourth grade was the beginning of the end of my childhood, not just because I was growing older but because on hindsight a stores of events began that would alter who I would become for the rest of my life.  A simple diagnosis, my mom who was an RN (who had left her profession when I was born to be a stay at home wife and mom), her siblings busy in their own lives and Mom being drawn to helping her parents.

 We lived approximately am hour and a half from my grandparents.  Grandma with leukemia and Grandpa with heart problems meant Mom began making more frequent trips to help them.  My Dad accepted a job in El Reno, an hour away from home.  Along

with that new job came him staying in a a motel Monday-Friday for almost a year.  When Mom was home, she and I would go over on Wednesday nights and spend the night, leaving early on Thursday for me to get to school.   This was our life until  we finally found a house and moved.

What does that mean to a girl whose Mom is caring for grandparents in one town, Dad is in a motel for work in another town and my school is in yet another town?  Fortunately my

brother who is ten years older than me was married.  His wife was kind and willing to take me in when my parents were gone.  She'd pack my lunch, take me to school and we'd make cookies for or just go see my brother who was working in the oilfield.

Fourth grade. Fourth grade defined me.   Who knew?

Damn!

I usually blog from a very positive perspective but I feel led to share my real feelings in what I hope will be a safe place to share.  I have known since 2008 that damn dementia would one day wreak havoc in my life and in the last seven months it has reared its ugly head and caused me more stress, more tears and even resentment than I ever though possible.

In 2008, my proactive Mom-active member of Oklahoma Silver Hair Legislature and advocate for senior citizens-came to Arkansas to see a doctor at the Washington Regional Medical Center for memory testing.  At that time she was diagnosed with Mild Cognitive Impairment and he said she may or not ever develop Alzheimer's but he chose to start her on Aricept as a preventative. It did a really great job of giving her almost 8 years before she started showing real symptoms.

My explanation for Moms dementia is she has gotten more simple, developed a softer personality.  She has been very aware of her decline until recently.  Mom would ask lots of questions and asked for lots of guidance in making decisions.  Now she seems to not be aware of her condition, other than forgetting names and having a difficult time recalling words.  It's unbelievable how much I miss my Mom.

Dad first began showing signs of a brain tumor when I was 14, it was almost seven years before he received his diagnosis which required surgery in 1991.  I really don't have many memories of my Dad before he was sick; after surgery he was never the same.  Dads tumor was approximately the size of a ping pong ball, it was between his skull and the lining of his brain on the right side.  (If you're not familiar, the right brain is home to your creativity, imagination, intuition, insight, left side among other things.) In 2013, Dad had his first memory testing performed; the conclusion was vascular dementia with a suggestion to not drive.  Dad got very upset with the doctor claiming he had threatened him.  We did nothing to prohibit his driving.  Over the past 5 years we've noticed a decline in his ability to recall words, names and a lack of judgement.  Again in December 2016 he went through memory testing this time with a different doctor, her diagnosis was the same but she added on an "unspecified dementia" and directions that "if the patient refuses to quit driving the family must take away the keys or disable the vehicle."  

Back to Mom, in March 2017 she saw her doctor and she asked about driving.  He said he couldn't definitively say and referred her to driver control. They reviewed her case and ask for additional information from her doctor.  They honestly answered that she does have Alzheimer's Disease, driver control revoked her license immediately.

After Mom lost her license, we continued to talk to Dad about no longer driving.  We showed him the note from the doctor, we encouraged him by reminding him that we have 3 licensed drivers ready to drive him anywhere at any time.  He still refused.  Ted and I had to go out of town, leaving our eldest daughter at our house responsible for our other kids AND my parents.  We knew it was time for us to put a stop to his driving, we had no choice but to disable his vehicle.  He lost his temper worse than I'd ever seen, he blames me and says the doctor only made him quit driving because I was under stress.  I've tried appealing to his sense of logic by explaining that making him angry and taking away his driving ability only increases my stress. His lack of insight has really become more significantly pronounced, his temper is very short and he lashes out frequently at Mom and I.

This is where I am.  Most days I cry at least once. I can't seem to escape that feelings that fill me with a sadness and fear that not very many people understand.  I'm inheriting the risk of dementia from both of my parents, not just dementia that comes with age but that damn dementia that comes from your family.  What a crappy inheritance. Through this blog I will be real, raw, vulnerable and hopefully someone will find comfort that they are not alone in their journey