Monday, January 30, 2012

Acceptance

For the last few weeks, Mike's legs and ankles have been swollen...edema. It's a sign that his kidney's aren't functioning well. This past Friday, I came home to find Mike breathing really heavy. He was burping all night long and his acid reflux was in full force. As he burped, stuff would come up, then he would swallow, then cough as he choked down what just came up. On Saturday we had a new aide (an entirely different story and one in which I will share in a different post...it has to do with Medicaid) and I was very careful to show her how to feed Mike. Both Saturday and Sunday Mike had not urinated during the day, only overnight. Today he woke up dry, but DID go during the day. I cut back his food even more, but tonight he still had the acid reflux problem. I've been up with him pretty much three nights in a row. He has a sore on his toe as well as an opening on his lip on the side of his mouth where he takes in food/liquid. He still has his 5 other bed sores.
When I write all this out, I realize it doesn't sound too good. I told someone just today that our BIGGEST problem is going to be accepting "it" when it's about to happen. For 5-6 years now, every time Mike would get sick, we were told that "it was the beginning of the end". I can't even tell you how many times professionals told us this. Thinking back, it was a complete disservice to us, because when the time does come, I'm not sure we will believe them.
As is usual for my family, I get my children's hand me downs as far as technology goes. I recently acquired my son's old iPod. Since I have been in - and up - with Mike these last few nights, I've decided to play him "our" songs. We lay together and listen as our history plays before us. As each song is played, I can remember exactly where we were and what we were doing. I lie there and cry that all we had hoped for our future will never come true. I talk to Mike and let him know how happy he's made me and how proud I am of him. I tell him what a good father he is. I hope (and I truly believe) that he can hear me and know what I'm saying. I tell him all this quite frequently, because I honestly do not know when his time will come. It never hurts to say I LOVE YOU too often.

6 comments:

Frank Endres said...

I can not express to anyone how much love my sister (Karen), neice (Courtney) & nephew (Brandon) have for their husband & father. Unless you see it everyday as I do, you can not begin to fathom the love & heartache this family has been through. My sister, to me is my hero, selflessly giving everything she possibly can to take care of Mike & her children. Then, my neice & nephew, what can i say, both growing up taking care of their dad, keeping up great grades all through, grade school, high school & now college. I can not say enough about them either. My sister is tireless in her caregiving & raising awareness for early onset alzheimers. There is so much more I can say about my sister & this family but for now I just want to say I've never seen strength, love & courage like I see in this family. I am so proud of my neice & nephew. I am so proud to say that Karen is my sister & my hero !! I only wish one day I will know what it is like to love someone so unconditionally as my sister loves Mike.So Proud of you Karen !!

Kathy Knowles said...

Karen, I think your brother said it all. You love Mike unconditionally with all of your heart. The experiences your children have had make them compassionate special people. What a testament to your love for Mike to have these wonderful kids you have. My heart aches for you as you say goodbye to Mike, but what rejoicing there will be when he is whole again in Heaven and reunited with his loved ones who went before him with this hideous disease. You are a special lady, and I'm praying for your peace.
Kathy

Anonymous said...

that goes for all of us sick or not for we never know when our day will come. As for the doctors doing you a dis-service, I suspect they truly thought it was the beginning of the end and did not just say it to you lightly. It only goes to show you absolutely nobody but God above knows when our time will come.

Barb Adams said...

“Before I Leave Myself…and You Behind”
© 2011 Barbara Franco Adams

You Tube:
http://www.youtube.com/watch?v=pTwmtmenLuM&feature=g-upl&context=G2bb6cbdAUAAAAAAAAAA

On November 2, 2011, Glen Campbell and his wife appeared on the Ellen DeGeneres show. Glen's moving story of being diagnosed with Alzheimer's touched me deeply. After listening to Glenn perform, with his children in his band, I became inspired to write this song. The line, "Before I leave myself...and you behind," came to me immediately. From there this song was born.

This is a tribute to Glen Campbell and others contending with Alzheimer’s and other forms of dementia. Karen, I hope that you find my song meaningful. I'd love to hear back from you. Warmly,
Barb Adams

Barb Adams said...

“Before I Leave Myself…and You Behind”
© 2011 Barbara Franco Adams

You Tube:
http://www.youtube.com/watch?v=pTwmtmenLuM&feature=g-upl&context=G2bb6cbdAUAAAAAAAAAA

This is a tribute to Glen Campbell and others contending with Alzheimer’s and other forms of dementia.

On November 2, 2011, Glen Campbell and his wife appeared on the Ellen DeGeneres show. Glen's moving story of being diagnosed with Alzheimer's touched me deeply. After listening to Glenn perform, with his children in his band, I became inspired to write this song. The line, "Before I leave myself...and you behind," came to me immediately. From there this song was born.

Karen, I hope this song is meaningful for you and your children. I'd love to hear back from you.

Karen said...

Barb -
The song is beautiful, but I couldn't hear some of the lyrics. Can you send me the words? I'm going to try to post your video to FB - would that be OK?
My sister is a HUGE Glen Campbell fan and we were both sad to hear of his diagnosis. We also watched him and his wife on Ellen. God Bless them.