The Gift

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I received a gift some time ago that I just could not unwrap, I let it sit around, stared at it and knew it was there…but I just didn’t want to pick it up, unwrap it and peer into it’s contents.

In some ways, it was a gift I never wanted.

Sometimes….. I really just wanted to give it back or even throw it off my deck into the woods hoping it would roll down our hill into the creek and be washed away never to be seen again.

The more I stared at it, the more I despised it, but the more I thought about it, I slowly broached it and began to open it purposely and deliberately.  It was a slow, I began to peel away the layers of wrapping paper to slowly catch of glimpse of this Gift.

It’s been six LONG years since Curt was diagnosed at age 46 with Younger Onset Alzheimer’s.

It has taken me six years to just now begin to see the glory of The Gift we have been given.  It was not easy to see during those first few years.  There was some anger, bitterness, grief all piled together.

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But as the years have dragged on and I continued to plead with God for wisdom, healing, help, provision, financial stability, care, friendship, guidance….. I have finally come to realize He has provided us all those things on this journey. We have been able to look back and see how God has used our community, friends and family to bless us in big ways.  What a treasure it has been to see God’s hand moving to provide.

It’s been a Gift!

A true Gift… a gift few receive.

I have had a privilege of seeing the kindness of strangers, the provision provided to us by friends, our needs met in ways I never could imagine, sweet notes of encouraging words sent our way, surprises of kindness and care for our needs.

I remember that first Christmas after Curt was diagnosed, someone anonymously gave us this note:

Experiences…….it’s what our lives are made of……We would like you to accept this gift and experience something fun…..something relaxing and enjoyable away from your daily worries and duties…..we know how important this is and how seldom we make the time to do it.

Funny how many times we are not even aware of how many people we touch throughout our lives…..sometimes directly……..sometimes indirectly…….sometimes through actions……..sometimes through words…….sometimes by the smallest thing that we don’t even see…….So please accept this small  gift from people of lives both of you have touched…….some that you know……..some that you don’t……and each time you look at this angel…..know that someone is thinking of you and someone is praying for you………………

Enclosed was a check that pretty much covered our upcoming ski trip.  We had not told anyone about our trip.  But God knew….He orchestrated it all. He provided. He brought others to us at the right time.

One spring I was in need of a lawn mower.  A few days later a friend of a friend shows up at our door and says, “God told me to give my lawn mower to you!!”  What!?!!!!  Another example of our Gift.   I could go on and on, there have been many examples of seeing first hand God’s care provided to us through friends and our community.

People often look at me, and say they are sorry, sorry that bad things happen to good people.  They wonder how God could allow this.

But the Gift in all of this is seeing first hand the amazing way God has provided and blessed us IN the storm.  I would have never chosen this journey but I do have the choice on how I handle it.  And that choice involves truly seeing the Gift in all of it. My trust in the Lord to provide is forever changed, my faith, a fortress I cling to in this storm.  I have seen the hand of God provide for us in amazing ways financially, I have seen first hand people care for us and give us hope……do you see a glimpse of this Gift my friends?

Isaiah 43:2 (NIV)

When you pass through the water, I will be with you.  When you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned….

 

Yes when going through the trials of pain, heartache and heartbreak, discouragement and grief it is then that you too get to experience His Gift of seeing you through it and using others to bless you in it.

Like I said at the beginning of this post, at first my emotions did not want to see God seeing me through the storm, I just wanted the nightmare to GO AWAY.

But now as a seasoned sojourner blazing the trail of grief and heartache I do see how God has provided in amazing ways and I have come to see the true Gift of difficult trials.

If you are currently enduring a crisis, or living out the grief of a loss of a loved one, or experiencing the heartache of a broken relationship, or financial uncertainty, loss of a job, loss of something or someone dear to you or a serious health struggle………I do know this….  God may not take away your pain friends.  I am so sorry.  But…. He will see you through it all and maybe, just maybe someday you too will be able to truly see the Gift in all of it. Hang in there dear one.

It has taken me six years, but I see it now and am thankful. ❤

This Christmas, my favorite Gift is not one I will find wrapped under the tree.

After all as the song says, you must go Dashing Through the Snow in that one horse open sleigh, in order to be laughing ALL the way. 🙂

Merry Christmas and Happy Holidays my friends!!

img_9122-1Thanksgiving 2016

 

 

P.S.  The picture of the gifts at the top of this page……the gift with the zip ties is the gift Madi gave Tyler last year at Christmas.  🙂  A fun sense of humor is another thing that has gotten us through all of this…..but that will have to be a post for another day. 

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~Also as an update on Curt, he is struggling a bit lately……all things we anticipated during End Stage Alzheimer’s and they are a typical sign of the long journey of a disease that offers no cure or positive treatment plan.  However, he does still maintain his contagious laugh and humor. Just yesterday I was showing him the pizza scene clip from Home Alone, he laughed so hard I had to remind him to breath! 🙂  We are thankful for that!!~

 

 

A Caregiver?

I remember a few years ago, shortly after Curt was diagnosed with Alzheimer’s going to an online support group for those who know someone with Alzheimer’s.  As I signed up I had to list if I was patient with Alzheimer’s or a caregiver.  I remember thinking, what?!? I was neither, I was Curt’s wife, he was my honey……I was NOT a caregiver.  I was so mad at this website, it forced me to sign up as a caregiver and I clearly was not.  At that point I really had no idea of the role of a caregiver or what that meant.

C and I Ice chair

Well…………almost 2 and a half years later I find myself feeling a lot more like a caregiver and less like a wife.  I help Curt get dressed each morning, put his shoes on for him, pour his cereal, pull out the chair for him to sit down on to eat, turn on the TV to ESPN (since he can’t use the remote anymore) and then head out the door for school each morning.  (Someone comes a little later to stay with him during the day while I am at school.)

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At a basketball game

I put his seat belt on and buckle it when we go places, put his coat on and take it off for him,  cut up his food so he can eat it, help position him in bed each night (he forgets where to lay his head each night), help put the covers on him and the list goes on and on.

Yes, I have become a caregiver.

When we took our vows back on June 17, 1989 and I said those infamous words, “for better or worse and in sickness and in health”, I meant it.  Sure I wasn’t thinking about Alzheimer’s on that beautiful day in June.  But God had other plans for our marriage and now is my time to show LOVE to Curt by caring for him.

He is so sweet telling me every day as I walk out the door how much he loves me.  He also greets me at the door every day when I get home.  He feels safe with me, he feels cared for by me and I hope he feels loved.  I can assure I do have those moments when I feel like letting him go to sleep with his jeans and shoes on because I am just too tired to put his jammies on. 🙂  But, He is my honey and despite my new caregiver role, I will always be his WIFE for life!  I have learned as of late the true meaning of those words spoken on that hot summer day in June.

Mark 10:6-9 New International Version (NIV)
“But at the beginning of creation God ‘made them male and female. ‘For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh. So they are no longer two, but one flesh. Therefore what God has joined together, let no one separate.”

Family News

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I have not updated this blog in some time now.  Things got really busy for us with basketball season.  It was a rough season for Tyler!  He broke his LEFT ankle in a scrimmage in Early December, his team was 3-7 with out him.  He came back, and played 10 games and his team went 7-3……but then in the midst of an important overtime game, in the first 30 seconds of overtime, Tyler came down on someones foot and fractured his RIGHT ankle and had to miss the rest of the season.  It was a heart breaker.  But my boy is a trooper and maintained a great attitude, well…. except for the first night after he broke it the second time, that was rough. 🙂

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Note, the same boot he wore on the left foot is now on his right!

The night he broke his ankle was also a special night for our family.  Our wonderful basketball parents club did an Alzheimer’s Awareness night and raised about $1,000 for the Alzheimer’s Association and a little over $4,500 for a special fund set up to help pay for Care for Curt down the road.  Such a special night for our family, with such a unfortunate ending.  Yet ,we did feel so loved by the wonderful community we live in!  Our cool small town has been so very supportive of our family!

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Presenting the $1,000 check to the Alzheimer’s Association

I just entered the spring sports info into the calendar for March, April and May……..it’s a bit overwhelming, Madi will play her sophomore season of Lacrosse and Tyler will play his senior season of baseball.  So your ongoing prayers for my sanity are appreciated!!  Tyler graduates in June (sniff sniff), Madi has her 16th birthday at the end of May…..oh I feel the spring chaos already and it’s a freezing, winter day. 🙂

~Thanks for your ongoing prayers, encouragement and LOVE for our family…..we are blessed!~ Sandy

Madi sign

Madi made this special sign for her BFF.

Ugh!

Well things at our house as of late have gone from bad to worse.

Yep, there, I said it bad to worse….so be prepared this is going to be a discouraging, depressing kind of post.  It had to happen, there had to be a kink in our armor of life, and I think I finally found it.

It’s called Alzheimer’s anger and it ain’t pretty!  I have seen glimpses of it for a few months now, but I could always reason my way out of Curt’s insulting demise.  But this time it was to no avail.  It is amazing the assault this disease has on the brain!  It  slowly steals away your logic and higher order reasoning skills.   The worst part is it leaves you thinking you are still the same logical, wise adult you once were!

This past Friday was the start of this unexpected anger assault.  By Sat. morning it was rising with a furry.  I made the mistake of trying to reason with Curt, which only led to greater frustration on my part and more anger on his part.  But somewhere in the midst of my trying to reason this through, he said he was going to call the police on me for assaulting him.  It was a sad, yet revealing statement, because it was at that point I realized he had really lost the ability to reason and I needed to change my approach from here on out.

I also realized that Curt will ALWAYS be the WISE, insightful man I married, and the man that was spewing anger, and irrational words at me was the disease speaking to me NOT the man I married!

Things got worse as the weekend went on, and even continued into the school week. I ended up being late for school the one morning because he woke up and was so upset with me about not telling him that there were seven stages to Alzheimer’s and was worried the kids would play their music too loud at the computer despite the fact that we now have headphones for them.  He was confused and mad.

But  this disease is so unpredictable, we had some great moments in between and things seemed so normal……well as normal as normal can be. 🙂

We have tried to make things a bit calmer at our house, which isn’t always easy if you know our goofy, loud, humorous family….but we are trying.  I am praying that will bring a calmer spirit to Curt.  But I see this as another step on this dismal journey….I can assure you we are not enjoying it, but I can also assure you that as God does  allow such difficult moments, He is there with us through out it. I read somewhere that if God sends us over rocky paths, He will provide us with sturdy shoes.

Well I can assure you I now have some pretty sturdy shoes! 🙂

(Actually they are Tyler’s stinkin, huge, size 14 boots!!)

Thanks for the prayers, emails, and texts this past week friends!

How’s Curt?

I get asked that question by someone almost every day.  And I am thankful for their care and  concern for my hubs.   Friends and even those in our community have been more then kind to us in so many different ways.  🙂

But the question remains, how is he doing?

I often respond with, “he is ok.”

It’s been over a year since he was diagnosed so people will often ask, do you notice a decline?

When I think back that over a year ago at this time he was teaching, I know there is a decline, because there is NO way he could be teaching now!

He’s not doing great by any means, but he is not sinking quickly into the quicksand of Alzheimer’s disease.  His symptoms are worsening, but thankfully at a slow pace.  He really struggles with not being able to spell or write.   He knows what letters, or word he wants to write but somewhere in transfer from the brain to the hand the muck and mire of Alzheimer’s destroys that process.  And he can not write even simple words at times.  It is very frustrating to watch. Add to the pot the fact that my husband has always had a determination to get things done….. so he often continues to try and try to get it right.

So he can’t fill out simple forms, checks or even sign a receipt to leave a tip. He has trouble even writing his name correctly.  He recently forgot his Social Security number and the year he was born.  He has trouble with word retrieval at times, he mispronounces words and stumbles over  words when speaking.  His depth perception is off, as well as his understanding of personal space.  He will often just stand in the way of the commotion of the house not realizing he is in the way.  He has some trouble completing simple tasks (shoveling snow off the deck) he just goes about it in an awkward, very time consuming manner.  Yet he can still mow the lawn ok, I think it’s newer jobs that are not as much a part of his routine that seem to give him more grief.  He also rarely reads much anymore.  And as of late he is VERY tired and not real motivated.

  All of this is Alzheimer’s…..who knew, I sure didn’t.  I really thought it dealt mostly with short term memory issues.  That is an issue, but so are the half a dozen other things!

But here is the good news, the guy is still funny and retains a fun, witty sense of humor!  He is still passionate about his Phillies (even when they choked this year!) and the Eagles and follows them quite well.  As a former social studies teacher he enjoys following the world and current events. He is quite into the current Republican presidential nomination process and the debates.  His dream team would be Newt Gingrich for President and Herman Cain as the VP.  He still pitches baseball to Tyler and plays the drums on Sunday mornings at church.  Oh yes and he still loves his beloved Roma pizza.  As well as the meatball subs from his favorite local pizza joint!  When I was in North Carolina for the weekend I found 4 receipts for Roma pizza! 🙂

And for those who truly know Curt,  you would want to know that he still knows how to purchase and eat a Snickers Bar!!!

November is National Alzheimer’s Awareness Month…..I know, you probably didn’t know that.  I wouldn’t have a year ago either. 

So I thought I would do my part to bring some awareness to what people deal with daily when living with this monster of a disease. 

It’s a difficult, frustrating journey we are walking every day. 

But these words Harriet Beecher Stowe penned oh so long ago seem to describe our  attitude towards it all.

So to the heart that knows your love, O Father

There is a temple sacred evermore

And all life’s angry voices causing bother

     Die in hushed silence at its peaceful door.

Far, far away the roars of strife and grief fall silent,

     And loving thoughts rise ever peacefully,

And no storm, however fierce or violent,

Disturbs the soul that dwells, O Lord in Thee.

It’s been a year

Oct 1st a year ago was when I first heard those dreadful words, “Curt has dementia, most likely Early Onset Alzheimer’s.”I had known in my heart for some time that something was wrong with my dear husband, I had basically come to the conclusion on my own that he had Alzheimer’s.  But when the doctor took my intuition and made it a reality….the words hit hard.   I cried most of the way home from the doctor’s office, overwhelmed for our now unknown, unplanned and  unpredictable future.

We hadn’t really formulated a plan on how to tell Tyler and Madi.  They knew we had gone to a doctor to get results for the 5 hour memory testing Curt had endured.  They saw my tear stained face and immediately wanted to know what was going on.   We sat down with them and the words pretty much just spilled out.  So unplanned……so unlike me.  We cried a bit, we prayed a lot and I ended up sleeping with Madi in her room for about a week as she worked through the emotions of now having a dad with Alzheimer’s.

But with in the week we were doing normal things again….we had to.  Curt was being a “cheerleader” for a student on Daddy/Daughter night since her dad couldn’t be there.  Tyler was finishing baseball season and gearing up for basketball season and Madi had a big cross country meet. We are a busy family with two busy teens.  We are just now a busy family with Alzheimer’s thrown into the mix.
Life goes on.
And just as it is with this post.  I actually started writing it 2 weeks ago.  But life got really hectic and busy.  Included in that was a long 8-10 hour drive to North Carolina for a weekend baseball tournament where I looked at too much of this;

Life goes on
I reflect and remember.
For weeks after Curt was diagnosed I constantly pondered and thought back over the last several years.
Yes, there were lots of signs, foreshadowing of what was to come.  In hindsight there were so many indications of a storm brewing in Curt’s brain.  The time he couldn’t put a simple swing together 3 years ago, or the trouble he had putting our tent up when we went camping in 2009, the sudden loss of interest in his hiking passion,  the late payment charges on bills, his apathy.  It all  made sense now.
But…Life goes on
But Life goes on with such a different perspective now.
The little acts of kindness to our family mean so much and are never overlooked.  Some random sweetheart of a person sticks a delicious box Wilbur Buds in my school mailbox every once in awhile.  Such a little thing, but a big thing to me!
Family and their supports means the world to us!

Friends and even strangers who care for us, pray for us and help out.  While I was away in North Carolina last weekend a group of men from a local church came to cut down a huge, dead tree near our house.  I came home amazed to find a huge, empty gap where the tree once stood.  We were surprised and blessed to see the SHAPE of the stump that was left behind.  This stump will long serve as a reminder of the LOVE of Christ shown by this group of men.

Yes life goes on for all of us.  But we now carry a different perspective on this journey.  We are blessed in many ways by so many of you.  But most of all we have a greater understanding of the depth and power of the LOVE of Christ.  His care for us, His provision.

We are changed, Yes Life goes on…..but we walk it differently so much more aware of the presence of Christ which reveals many of His presents.

‘So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10

Yes we are changed!  Thank you dear friends for your prayers and love for our family!

Life goes on and we are not dismayed, shaken some, but not dismayed.  God’s strength is what sustains us!