State of the Union, Alzhiemer’s update

Trust me I am not feeling very Presidential at the moment, but the President always addresses the country each January on the current state of affairs so I figured I would do the same!  Many of you ask how Curt is doing these days…..so be prepared for lots of details.

I have hesitated many times to post so many details on how he is doing.  I want people to remember Curt as a strong, confident, humorous man with strong Godly convictions.  A fun, engaging conversationalist who could talk sports and drums for hours. Not the passive, struggling man that Alzheimer’s has engulfed and transformed.  I feel by giving so many details that I am exposing his struggles and leaving his dignity behind.

C with a big smile

However, I also want people to understand that Alzheimer’s can grab you and knock you down even in your 40’s! It slowly steals away your personality and being.  The Curt we see now is a reflection of a disease that is holding him captive. And so many of the things we think of that relate to Alzheimer’s is not really what Curt is dealing with.  It really looks different in everyone.

I know I have mentioned this before but it continues to be the spatial issues of life that are causing such digression for Curt.  He really can’t even get into his own bed at night on his own.  He needs guidance as to where his side of the bed is, then I guide him toward the top of the bed and tell him to get in.  He starts the process but can’t finish it, so I need to pull his arm from under him, to get him onto his back and then position him in bed each night.  I then put all the covers on him since spatially he can’t pull them up over him anymore.  He then usually falls asleep pretty quickly and stays in that same position all night!  If he needs to get up at night to use the bathroom, he can’t get out from under those covers with out help and no longer understands the concept of going pee.  He will tell me, “the water” or “the pressure is killing me.”  But when I say, “do you need to go pee?” He will now tell me he doesn’t know what that is.

Each morning when I get him out from under those never ending sea of covers (as he sees it).  We head to the bathroom for his morning routine. With out going into too many details, I will tell ya I need to help with all aspects of the morning routine, going to the bathroom, shaving, brushing teeth, spraying the man with some nice cologne and getting him dressed.

As soon as he is dressed, I tell him everyday, “Now you are ready to go and conquer your day for Jesus!”  That usually brings a smile to his face.  I then help him down the stairs ( this is a new problem, the steps) and have him sit down in “his seat” and pour him a bowl of cereal, pour plenty of sugar on it for him ( really he might as well live on the edge and enjoy his cereal with lots of sugar!) and turn on his beloved Sports Center.  He sits in his chair using a TV tray to eat his cereal. But when he is done, he can’t always move the TV tray to get up from the chair……that is another spatial issue that leaves him so disabled.  But as I get ready to head out the door for school each morning he ALWAYS tells me he loves me and reminds me to have a good day.

He still knows people every where we go, he will see old friends when we are out and he always initiates greeting them.  He loves to watch old movies, and enjoys listening to people read to him.  He can no longer read since he spatially can’t follow a sentences to the next line.  He can’t play drums, but can still play a simple beat on the snare and bangs out beats on his legs all day long! :)

college roomates

Visit from Curt’s college roommates!

One of the most frustrating things is his declining use of language.  He knows what he wants to say, but it does not come out the way he wants it to.  His words are broken, and he often stutters, or mumbles the words together.  It may take him up to 10 minutes to simply convey the thought he wants to. He has lost the meaning of simple words and does not know how to use them in the right context anymore. 

Things like, “going to our place” will mean he wants to go to bed.  Or, “go to that place down there” usually means he needs to go to the bathroom.  Or sometimes he may give a slang name for an object, TV became boob tube the other day and shower became watering hole. 

He has also started getting more lost in our house.  I used to be able to say “go upstairs to get ready for bed.”  Now if I say that to him he has no idea where upstairs is. 

So many changes as he continues his fall into the grasps of  a monster called Alzheimer’s.  I savor those moments when we do catch a glimpse of the old Curt, and allow myself a chance to take take it in and reflect on the Godly, fun loving hubs I married.

So, that is Alzheimer’s a disease, it continues to take hold of people of all ages.  An estimated 5.2 million Americans of all ages have Alzheimer’s disease in 2013. This includes an estimated 5 million people age 65 and older and approximately 200,000 individuals younger than age 65 who have younger-onset Alzheimer’s.  In 2013, Alzheimer’s will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.

Alzheimer’s disease is the 6th leading cause of death in the United States overall and the 5th leading cause of death for those aged 65 and older. It is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression!!!!!!!!  Yes it’s not a pretty picture is it???  But that is the state of Alzheimer’s in our house and in many houses across the United States.

C and T before college

Taken right before Tyler left to return to college

So while our situation can look rather grim and depressing at times, I seem to cling to this quote (borrowed from the blog of a dear woman who has had unbelievable struggles in the last several years, from her hubs with constant reoccurring benign brain tumors and seizures to her dear daughter (one of their 6 kids) who was just seriously injured after being hit by a car while walking on a sidewalk outside her school!)

In the darkness we have a choice that is not really there in better times. We can choose to serve God just because he is God. In the darkest moments we feel we are getting absolutely nothing out of God or out of our relationship to him. But what if THEN-when it does not seem to be paying or benefiting you at all-you continue to obey, pray to, and seek God, as well as continue to do your duties of love to others? If we do that-we are finally learning to love God for himself, and not for his benefits.
And when the darkness lifts or lessens, we will find that our dependence on other things besides God for our happiness has shrunk, and that we have new strength and contentment in God himself. We’ll find a new fortitude, unflappability, poise, and peace in the face of difficulty. 

~Tim Keller from the book Walking with God Through Pain and Suffering~

C at pretzel hut

Enjoying a milkshake at one of his fave places

Yes, we all have a choice in good times and hard times……it is our choice, and our decision on how we choose to handle things, with despair and discouragement or with our eyes focused on the big picture of a life lived to honor God.

~Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal!~  II Corinthians 4 16-18

Thanks friends for walking this journey WITH us!

christmas family pic

6 responses »

  1. Thanks for sharing this, Sandy. I continue to pray for all of you. I just can’t even imagine the daily struggles. I praise God for your faith and endurance. May he continue to grace you with everything you need as you care for Curt and so many others. You’re amazing.

  2. Oh my sweet friend. Reading this right before I go visit my sister. I can relate to so many things and am in awe that you are dealing with this at home every day and still working and being a mom.

    Love, love, love the quote by Tim Keller. Spot on.

    Hugs to you.

  3. What an awesome quote! Thank you for sharing all that you do. I can only imagine the struggle that goes on in your heart over what and how much to share. I’m praying that God continues to use you and your family to encourage others. I know you have been an encouragement to me every time I stop by.
    Hugs

  4. We have never met; somehow I found your blog a while ago and have followed it ever since. This post really enlightened me to what this disease is really like; we hear that it affects memory and we don’t realize what all that means. Thank you for your openness and honesty. The quote from Tim Keller is great for all our times of darkness. You are in my prayers.

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