dementia

Dementia is hell.

I've stared at that statement for 15 minutes now.  How do you elaborate on that?  It says it all.

2010 my parents came to us, at Christmas and told us that my mom had dementia.  At the time it didn't really set in with me.  Mom was mom, I hadn't seen the changes that dad had witnessed.  

My Papaw Perry had dementia but back then it didn't have a name.  I remember they would just say he was sick and old.  I watched his life deteriorate.  He was active being a dairy farmer.  I remember going to feed the cows with him, I loved being by his side as he called them.  They came straight to him.  How cool for a  young girl to have a Grandpa who had cows as pets and lots of them.  I remember my mom and her siblings helping Grandma as he became more ill.  They sold the farm and moved in with my uncle who lived right next door to us.  I would visit, watching him to give Grandma a break. I used to sing to him and he would react positively.  He knew we were there, through the confusion, he knew through our singing that we were there.  He had numerous strokes, was bedridden and unresponsive towards the end.  I was crushed when he died. 

2017 and I'm watching my mom decline as well.  It is all to familiar.  We've been through different stages, everyday is different, we never know what to expect.  With my dad's heart issues we've had to step in and begin helping with mom.  It's been eye opening.  My dad was doing so much, it's no wonder he had a heart attack.  He promised my mom from the diagnosis that he would take care of her and he has.  He's my hero.  But now the hero needs help.  

I've had moments of deep guilt.  After being here, seeing the needs now I question myself on why I wasn't more involved. Why didn't I step in earlier?   I think it was just easier for me to let him handle it, not face the truth.  When I did come to visit and then head home it would hit me.  I would end up in tears, praying, begging God to help me understand how this was part of his plan for my parents. 

I still have those conversations with Him.  I question why she is still suffering.  Every once in awhile I see glimpses of mom.  She'll look at me with those beautiful blue eyes, smile, pat me on the back - it's surreal and emotional.  In those moments I'm glad she is still with us.  Again, surreal and emotional.  

No one can ever prepare you when a loved one has dementia.  There's no rhyme or reason to it all.  Cancer - you have a plan of attack.  This is a guessing game.  We loose more and more of her each day.  She will look at me not able to convey her thoughts but those blue eyes are fighting to try. It's heartbreaking.  

Her care is more involved than dad's at this point.   It's challenging.  It's emotional.  But there is JOY.  Dad's motto through all of this is to choose Joy.  To find JOY in the hard moments.  I'll be honest, it's been really hard.  But He promises to hear us, to comfort us, to make His will known.  So we pray and lean on Him.  We're taking it day by day, hour by hour - seeking Him, seeking JOY.  

my day in a nutshell

If I had to compare my day to a nut, I would have to say it was shaped like a walnut with ups and downs, curves and bumps.  Are you getting where I'm going with this?

I've spent the day at my mom and dad's, caring for them.  It's a long back story, one I will have to tell later in another post.   

It began at the normal time, 6 a.m. (it's funny how your body naturally sets itself an alarm even when you are able to sleep in). I tried to go back to sleep but my mind started wandering about things at home, the snow we had just received in Missouri, praying Art and the girls made it safely to school and work, praying as they woke up and got ready.  My dad was already awake and watching Fox News.  When I'm here I watch Fox News and the Hallmark Channel, that's just how it is.  So of course I was getting the latest up to date, fair and honest information.  The next hour and half went by quickly and before I knew it, it was time to get up.  

As it is most mornings here I got up, cleaned up my bedding and headed to the back bedroom to change clothes.  No shower for me since I had taken one the night before.  My comfy sweats were on, a bun in my hair, I was ready for the day.  I checked on my mom, her eyes were open even though she laid flat and still in bed.  I greeted her as I do every time I see her these days - "Hi Momma! I've missed you."  She smiled and started chattering some.  I sat at the end of the bed and patted her, listening to her chatter.  I uncovered her and helped her out of bed.  This morning she was steady on her feet and ready to go.  We worked together to get her dressed and in her chair at the breakfast table.  My dad had already made himself some eggs and toast which sounded good, so we did the same.  Mom ate well and was happy, smiling as I fed her.  So far, a great start.

Well in the rush to help mom get changed and move her along I had locked the keys for the bathroom, in the bathroom.  Yes, I had locked everyone out of the bathroom.  Ugghhh Nyla!  

I ran around the house, mom following me, praying I would find a spare key.  I texted my brother and sister, asking them if there was such a key.  There was, with one of them and my niece who were both two hours away.  Panic started to set in.  What was I going to do?!?  I went to dad telling him my dumb move.  He told me where to possibly find another key.  I looked, no luck.  Just as I was looking my brother texts me a youtube video on picking a lock.  How hard could it be right?  I found two paper clips just like the guy suggested and started working on the lock all the while mom paced around me, chattering, smiling.  It's like she knew I needed her sweet, light-hearted spirit in that moment of aggravation with myself.  I took a break from my frustration and sat down next to my dad who proceeded to tell me that he wished he could push me through a glass window.  What? Huh?  I knew I had messed up but golly, that seemed harsh.  Then he went on and I began to understand his idea....

The window to the bathroom could possibly be open.  

Did I mention it had been snowing all night?  We got two to three inches here and it is bitterly cold.  

So I headed to the back bedroom and grabbed my boots, coat, scarf and gloves ready to charge into the snow to check the window.  I turned around and there's my dad, in his coat, scarf and gloves ready to help.  Now if you knew my other back story, you would know this was not a good idea.  But I'll save that for later as well.  

I did let him go outside with me.  Other than the sound of snow falling (which I love that sound), it was quiet outside.  Everything was white and beautiful, almost dreamy.  I went to the shop and grabbed a flat head screwdriver and the ladder.  We headed to the window where dad proceeded to instruct me on how to remove the screen with that screwdriver.  I was able to get it off.  As I stood there, pausing, I prayed that window would be unlocked.  Please God let it open!  And... it did!!!  I sent dad in to check on mom while I climbed that ladder and went through feet first.  I grabbed the keys and opened the door with a huge sigh of relief.  Dad was there, waiting.  

I sent a text to my siblings and a picture of the keys.  They in turn sent texts, teasing me wishing dad had taken a picture of my key rescue.  

All was well again.  Or at least I thought.  

After lunch dad and I decided to tackle his office, get him caught up on bills and overall doing some organizing.  I jumped in, you know how I love to organize.  Dad asked me to go grab his check book from where he hides it.  I went but I couldn't find it.  I went back to dad asking when was the last time he saw it.  We checked all the places it would logically be but no luck.  I started to panic a little, I think he did too.  What had happened to it?  I tore through closets, messed up what I had organized, talked to my siblings and it all lead me back to his original hiding place.  This time I took a flashlight to see if it had fallen.  I found it in a spot that I had totally overlooked.  If it had been a snake....

Ugghh Nyla!  You did it again, caused stress for everyone in the house!

Check book and keys in hand I proceeded on with the day even though I should have thrown in the towel.  

The nurse showed up.  Calls came in like crazy, setting up appointments all while I was still organizing things for dad.  Dinner needed to be made, people to feed.  

I bring dad his nightly meds and we both realized we totally forgot to put on his compression socks for the day.  Ugghh Nyla!  My thoughts... "Nyla you are not fit to care for your parents today. Go home, give up, call it a day!"

But I didn't.

Dinner was made.  Meds were given.  Mom was tucked in, dad too and I got to take a long shower and wash away all my Uggghhh Nyla! errors for the day.  

My parents made caring for my siblings and me look so easy.  They never locked themselves out of the bathroom I'm sure!  

Man I love these two.  They love me, I know it.  What a privilege it is to be their daughter.  How great that they've always seen past my Ugghhhs.  I'm so lucky.