Monday, January 27, 2014

Am I OK?

I had to ask Brittany the other night If I was OK. I think I threw her for a loop, because if I am asking that question then I am probably not OK. Right?

I knew that I had not cried in awhile and that was starting to bother me. I felt detached and numb. I talked it out with her, cause that's just what we do. I talk, she listens. As Kirk declines I have to become more of a caregiver, plus do all I can to leave some of me left for my children. Which in itself is becoming a struggle.  So what I have discovered is that I am going into survival mode during those times. I block off my emotions, detached and face the task at hand head on. Is that healthy? I have no idea. Maybe I will give it the name "caregiver blitz".

We are coming into our 4th month of his 6 month prognosis. I continue to see a decline, but I'm praying believing for more time.

Parker will be here in 9 days. I made Kirk a "Countdown to Parker". Every day he marks it off. He will say "One more day till I am a Pops!" I absolutely cannot wait for these two guys to meet.

This disease is so mysterious. To me, anything that involves the brain is complex, mysterious, but very interesting.  I have had people mention different takes on Kirk's illness. I have been doing my own research. I have found that individuals that would have had Alzheimer's later on in their older age, if they have a trauma in their life it can trigger something in their brain to cause the disease to show itself early and rapidly. Three years ago Kirk had all of his teeth pulled at one visit and had dentures put in. For a man that is petrified of the dentist and never went this was a traumatic experience. I have to wonder if this set off what was destined to happen to Kirk later on in life.

One of my amazing friends took Kirk driving on Saturday. Kirk has been quite upset since the doctor took driving away. She took him driving in an open field and gave him the greatest gifts. Freedom and control. Two things he has lost through this horrible disease.  He had a look of determination. To give you a better picture, just imagine a dog hanging it's head out of the window of a moving car. Yep! That describes it! Thanks Jennifer for that gift! I love you!

To answer my own question......Am I OK? Yes, I am. Do I get down and a bit overwhelmed? Of course I do! I'm never alone, My friends, family and God are right there with me, in the trenches. Thank God I AM OK!

Thursday, January 9, 2014

Standing strong.....

A rarer form of the disease, known as young onset, can affect people as young as in their 30's.

Rarer! A rarer form.......that's it!  No one can tell me why it's happening so fast. I was told today the younger the onset, the more rapid the disease is.

My time off with Kirk is coming to an end. I am going back to work Monday, it was a hard decision. It's what I have to do and we will make it work.  This time with him has been priceless! We danced in the middle of the living room, sang at the tops of our lungs (out of key I might add), had precious talks about Parker and most of all just sat in silence holding on to one another for dear life.

The confusion that ravishes his mind is so evil.  At times he walks around the house without purpose, I ask him, "What can I do for you?" He tells me he doesn't know and curls up next to me in a ball and cries.  I try to put reason to it, but I'm unsuccessful. I stroke his face, caress his head and rock him struggling to hold back my own tears. I only want him to see me smile.... no tears!

I have put off going to the Alzheimer's Alliance.  In my mind if I walked through those doors it made it factual. My husband is 52 with Alzheimer's.  I made it through the doors today. I was met with a warm fuzzy. Not what I was expecting, actually I had no expectations because I didn't even want to be there. I will be back.

When you walk in our home these days you will find a red dot on the on button for coffee, blue painters tape on the door frame, pictures with details of who they are and Kirk's relation to them, red fingernail polish on the TV remote on button and many more tricks that help Kirk have a sense of dignity and control. This is our new normal. I have always said everybody's normal looks different. I'm sure it will continue to alter as time goes by.

I am amazed by the love and compassion my kids have. They have rallied around their dad! HE IS STILL THEIR SUPERMAN! I see it in the way they look after him and continue to try and understand what is happening to their dad.  I may struggle with that one for awhile.

As this disease strolls through our home like it owns the place, I continue to stand strong on God's promises......."I will never leave you or forsake you"