Friday, June 8, 2018

Escape?

"How are your parents?"

The question seems innocent enough.   It's polite that someone knows you well enough to understand you are their caregiver, yet somehow the question makes you feel small inside.  When your parents have one of those diseases that noone really likes to talk about... it doesn't have a catchy slogan like "race for the cure," a pretty pink ribbon or the widespread acceptance that it could happen to anyone like cancer,  MS, Lupus,  ALS, etc.  Dementia can be summed up with a four letter word-DAMN!  Because when you hear someone has it you think "damn what did they do wrong" you slink the opposite direction without even an inkling of understanding.   Because it can't be seen and isn't on the cutting edge of research toward finding a cure, most people just don't get it...actually it's more like they're afraid they will get it!

This week I'm finding myself in a new situation.   My youngest daughter is a competitive shooter,  this long weekend kicks off a summer of competitions.   Normally to save the expense of attending I volunteer.   I received a phone call a couple of weeks ago telling me none of the volunteer positions I hoped for needed me but I could work shotgun.   If you've ever been in Arkansas in the summer you understand why my reaction was,  "no thank you,  I'll pay my $185!" So here I am in an air conditioned room that's a cross between a dorm and a 70's style hotel.   Most parents who don't have volunteer jobs follow their children through each discipline of the competition anxiously awaiting scores and sneaking their kids smiles and thumbs up signs.  I'm not really a follower,  Jessica knows what she's doing and she relies on her coaches for support at shooting,  not me.

So what does that have to do with the DAMN in dementia?   These few days are my escape from dementia; a normal day for me is a phone call to check on my folks,  a trip to the post office with dad,  more phone calls with mom,  being tech support for Dad with his other or computer, trying to convince Mom she's done nothing wrong that Dad being angry is simply his disease,  pleading with Dad to be more understanding of Mom's repetitious questions because that's her disease.   Ideally, what not volunteering means I can stay in this room,  transported to the 70's and relax,  soothe my soul and forget about dementia for a while.

What it really means is I feel so uncomfortable in group settings,  making small talk has become a lost art for me because dementia is my constant chaos.   I'm relieved to not have to put on "face" and pretend to be able to enjoy conversation when following the discussion seems to be constantly just beyond my grasp.  While I'm 250 miles from dementia I'm still only a phone call away, it never really stops.  From the calls this morning insuring Grandma gets to her hair appointment,  the plumber gets to their house,  the donations from the church get to the thrift shop,  Papaw gets to check the mail,  mail his package and go to the bank. Oh and they've got friends coming to town tomorrow so someone has to help them decide on a lunch spot and get them there.  While proximity isn't close the reality is there isn't an escape.

I did get to decompress this afternoon.   I enjoyed a lengthy talk with my daughter,  a leisurely nap,  reading a book,  a little more nap and working on my blog.   So while damn dementia may never be far from my mind or my heart,  I'm really excited to have this chance to recharge! Soon enough I'll be back to full time,  live in person, damn dementia!

Tuesday, May 15, 2018

Two sides, one coin

Sometimes I feel all alone.  When my parents bought their home here in Bentonville, it was because they knew that one day they would need help-they believed that I was the child to be that help.  I began regular visits and helping with things long before they even thought about moving here.  I was there with Mom at her very first memory text when they told her she had "mild cognitive impairment" and I was with her a month later when her heart quit beating way too many times....that was the beginning of my life as a member of the sandwich generation raising my children and caring for my parents. Back in 2008 my parents lived 16 miles from my sister yet I was the one.

I continued to be the one until last year when the time came and we had to disable my dads pickup.  We had talked to him for months about the words from the doctor and how he had to quit driving.  He adamantly refused so we removed the battery.  Up until that point, my sister had remained oblivious and unconcerned about my parents health.  When my mom accompanied me on an overnight trip to Little Rock the unthinkable happened, Dad called the one person in Arkansas he knew that wasn't in my family.  To this day we have no idea what story he concocted but this man went and purchased dad a new battery for his truck and off dad drove.  I knew I had to enlist the help of my sister and tell her about dads diagnosis from the doctor.  Dad was angry  because we did remove the battery a second time and I told him that we were going to have to call my sister and tell her the truth.  Well, on the day we had agreed to sit down and call together Dad beat me to the punch...he called my sister while I was taking mom to get her hair done.  Rather than telling her about the doctor and his diagnosis he skipped to the part where my husband "stole" his battery TWICE!  When we sat down to call her together she was already angry at me for being so mean.  She promptly rushed to Bentonville to make sure dad was being treated correctly, we went to the doctors office where the social worker spent an hour trying to explain dads condition to my sister to no avail she like my dad couldn't hear the truth.

Dad began asking for a second opinion (in all reality dad had already undergone 2 full evaluations by two different qualified geriatric neuropsychologist whose diagnosis was agreed on by his neurologist and primary care physician) which was totally fine with me.  The social worker tried to impress the futility of seeking an additional opinion and how it would only lead to him wanting another opinion or causing him extreme frustration.  Of course my sister, being the savior, swept in to get dad that second opinion.  Rather than go directly to the neuropsych doctor who had been recommended by family, she sought an opinion and referral from her personal doctor who referred us to a neurologist who referred us to the neuropsych.  These appointments stretched out from July 2017 through April 2018.  It took 9 months for dad to receive a letter from the doctor outlining in even more depth all the things he'd already been told and a follow up with the neurologist who verbally told him the same things.  My sister received a copy of the letter and was there to hear the doctor in person.

It all seemed crystal clear until dad got an announcement about a tax class, he insisted he needed to take it to stay informed for next year.  Mind you he's been told by multiple doctors that it is not advisable for him to continue doing taxes, at the very least he needs to send a letter to his clients letting them know his condition so they can make an informed decision.  Dads flavor of dementia means he lacks logic and insight, going to a class means he's qualified which "in his opinion" means it's okay for him to continue doing taxes.   We have to not allow him to attend the class.  We'd talked about it several times, and I was encouraging him to slow down and not attend the class.

Of course that didn't work.  I heard everything from "Deborah will come get me and I'll go" to "Give me the keys and I"ll drive myself" and even "Maybe I an get a bus ticket to go to the class."  Mind you I have been more than happy to take Dad to classes in the past, to birthday parties, Masonic Lodge events, investment club meetings, anniversaries, etc. but like the battery, it's time for me to be the child who is like the disciplinarian parent-the one who enforces the rules.  Next thing we know dad has sent in the class reservation ($195/person) for my sister and him.  She's coming to get him AND attending the class with him.  She doesn't seem to understand that by allowing him to take the classes is giving him permission to continue.  Dad has promised in the past to slow down, reduce the number of taxes he will do, etc. then my sister refuses to help me enforce it and she lets him continue.  I'm really concerned that her inability to face reality is going to cause him to have more stress in the long run or he's going to make a mistake that will cost someone a large amount of money.

How is it possible that we can both get the same information yet see two completely different things?

Saturday, April 28, 2018

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.

Tuesday, April 3, 2018

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?

Monday, April 2, 2018

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