If you change the way you look at things, the things you look at change.

Tuesday, March 22, 2016

Opening the Window

I know that I have already posted twice today but I just wanted to post one more thing...

Yesterday Mom asked me to link up my blog to her Facebook page.  With a bit of hesitation, I did.  I blog here to record what is going on in our daily lives.  I'm used to my family reading it and commenting and sometimes even sharing it with their friends.  However, even though this blog is posted for public access, I rarely think of anybody besides family reading it...because...well, I figure nobody else really cares what we are doing!

I choose to share things here that I would NEVER share on Facebook.  I have rarely posted photos of our children or of our grandchildren there.  I just don't think that is mine to share in such a public forum.  I rarely post anything there at all.  I've asked the children before I began posting pictures of them or of our grandchildren here on this blog because that is truly their decision and not mine.  I even asked if it was OK to post images of my sick father before doing so.

I say all this because I realize that there have been more readers this week after Mom's link up and I want those folks to know that I am sharing as a way to record our family history but also, recently, as a way to share how cruel and heartless and heinous this disease can be.

We have pretty much reached a place where the disease has taken over.

It has taken over my father.  He can no longer think clearly or live independently or function in an adult manner.

He didn't even recognize his eldest granddaughter and great-granddaughter most of the day today.  Daddy asked Bridgette who she was several times today when she was helping him and taking care of him.  At one point he grabbed her ears and asked her if that hurt her as a way of trying to show her how his ears are now tender from the wear and tear of the oxygen tubing.  He called Lillie a couple of different names today and argued when Bridgette tried to clarify that for him.  He said, "No, her hair is not blond enough to be Lillie."

He makes ridiculous decisions - cutting his oxygen tubing with a pocket-knife or nail clippers and even biting the tubing into two pieces last night because it is bugging him and he cannot understand how that is helping to make him comfortable.  He persistently asks Mom to take him home.  Often he thinks he is somewhere besides Gosey Hill Road.  He thinks the house and furniture is just exactly like their furniture at home but it isn't home.  Mom has put him in the car and asked him directions to get home.  He navigated her around in a circle and right back to their house.  Then, he told her that he wanted her to take him home to their house on Gosey Hill Road as they were driving up the driveway to their own home.

He is too weak to even shuffle across a level wood floor with the aide of a walker without staggering or falling.  Last night he choked znd vomited and needed to be cleaned up.  He talked Mom into letting him just get in the shower.  That resulted in him falling several times - even while using a metal walker for support - even while Mom and a neighbor were helping to hold him and provide him support.

His organs are not functioning properly due to a lack of oxygen.  Thus, he is sick and hardly eating.  He barely nibbles a few bites - not even enough to feed a bird.  He didn't even have to use the bathroom all day today.

As much as Daddy likes to talk, his speech is slurred and stilted because he has such difficulty breathing.  Plus, there is the issue with his thinking - the things he tries to discuss are muddled, tangled, and confused in his mind and most of the time make no sense to him or his listeners either.  Things get garbled and mixed up and his conversations have gotten that way as well.

The disease has taken over my mother.  She is a care-giver twenty-four hours a day, seven days a week.  Her day starts with caring for Daddy and seems to never end.  If she sleeps for a two-hour stretch it is a miracle.  She helps Daddy walk, she helps him sit up, she helps him dress, and bathe, and anything else he wants or needs comes as a result of her effort.  Mom sits at Daddy's bedside or beside him on the couch and comforts him and tries to help him understand and sort through his confusion.  The patience and tenacity she has shown is remarkable.  Her every thought and waking second is consumed with taking care of Daddy and making certain he is safe.

The disease has taken over our family.  My daily talks with my children are focused on Daddy and Mama and how their day has played out.  We map out ways that we can be there to support their needs and help them cope.  One of them spends the day to help out and provide company and give Mom a hand and a couple of days later the other does the same.

Mike goes over to feed the livestock each day.  While he is there, he also checks in with Mom and sometimes visits with Daddy.  He catches me up each afternoon before I stop in over there for my daily visit giving me an idea of what to expect.  We stay at night when Mom will allow it - just so that she can get some rest.  I know she doesn't sleep for long but at least she has the option of turning over and going back to sleep if her racing thoughts will let her.

We cherish the time we have with Daddy.  We enjoy some of the funny things he says and does.  Yet, we absolutely hate what this disease has done and continues to do.

So, please know that as I open this window into our life, I do so out of love for the man my father has always been.  There is no normalcy and we don't know what awaits us but we do know that this is temporary and it too shall pass.