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!!~

 

 

Good Grief

A few months ago I was at my annual Gynecologist appointment.  As I checked in the receptionist was going over my emergency contact info.  She asked, if my current address was the same, and what my cell number was.

She then told me she has my husband Curt listed as an emergency contact.

I didn’t say anything for a few awkward seconds.

She asked if I wanted to make a change to the emergency contact.

After a long pause again with a long sigh, and I said, “Yes I probably should”

It was at that point she proceeded to tell my how she was recently divorced and had to get her ex off of all her emergency contacts.  She said, “Look I can remove him easily, it’s no problem, then you are free of him!”

I said nothing

Just a simple, thanks and gave her the names of my kids to put in for the  emergency contact.

 

I wanted to tell her He is NOT my ex, he is my sweet husband who is struggling with the horrors of Alzheimer’s and can no longer dress himself, feed himself or use a bathroom with out help.  I wish so much that he was still my emergency contact, the one who can take care of me in an emergency!!!

But I just didn’t feel like getting into it on that particular day.  Heck I was just thinking lets get this stinkin annual evil deed over with, after all this is the gynecologist’s office.  I was not really in the mood for chit chat before hand!

That kind of thing happens frequently

It’s a constant reminder to me of loss and grief.

 

Just tonight as I wheeled Curt around his new skilled nursing facility exploring it a bit.  I found myself meandering down a long hallway.  We came to a door and several windows.  I looked through the window to get my bearings as to where I was.  It was then that it hit me…….

those batting cages are right across the street.

………We sat right across the street from the very batting cages Curt would take Tyler to constantly.   They would work on Tyler’s swing and hitting a fast ball.  Oh the contrast was almost paralyzing. 

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Another reminder to me of the depth of our loss.

 

That is how grief is, when it hits, it hits hard. 

Alzheimer’s is a weird disease in the sense  you are confronted with grief while the person is still here.

With school starting next week, I always grieve the loss of starting back to school with out Curt.  This is the 5th year of Curt not starting back to school with me.

I start alone.

This October will be 6 years since Curt was first diagnosed. 

6 years!

Madi was in 8th grade running cross country, she had not even started her lacrosse career.  She couldn’t drive yet and was still short (ha ha, for those who don’t know my tall girl stands at 5’10)

Tyler was in 10th grade just beginning to dream of a drivers license and was starting the recruiting process for baseball after a trip to the College World Series. He was anticipating the start of High School basketball season.

I of course was young, athletic, skinny, cooking gorgeous healthy meals for my family every night while working full time……ok ok, but you get the idea.

Here they are starting school a month before Curt was diagnosed.

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Here we are this summer….a lifetime of high school and college memories that Curt does not know

View More: http://bekahgracephotos.pass.us/bethany2016

 

Oh the life we have lived with out Curt understanding or realizing the significance of so many family events and milestones.

You see this grieving has been going on for 6 years.

We have grieved many losses;

The day Curt had to stop driving

The day he stopped teaching

The day he could not longer dress himself on his own

The day he could not longer pitch to Tyler

The day he needed help being fed

 

And I could go on and on.

 

Life has been a struggle.  This summer the wrath of the storm of the last almost 6 years finally caught up with me.  Early summer was hard as I was really coming to terms with the onslaught of the grieving process and all we have lost.

I have learned a lot on this journey and honestly that is one of the biggest things I have learned…that it is a journey.

Grief, struggles and difficulties are a journey. 

They don’t go away in an instant.

I often pleaded with God to just make this easier, send a magic Easy button down to me that I could push and everything would be okay.

But yea, that didn’t happen. 

You have to keep pressing on

Keep seeking

Keep pleading

Acknowledge that you can’t do this with out God, and realize God is not always the quick fix God. Struggles can last for a long time, but God is still in it. 

I am reading a book by Elizabeth Eliott, “The Path of Loneliness.” She shares a passage from her journal shortly after her husband was brutally murdered in the jungle of his mission field.

” Yet I find that events do not change souls.  It is our response to them which finally affects us”  and little farther down in the passage…”The power of the Cross is not exemption from suffering but the very transformation of suffering.”

 

Yes dear friends, those of you who are struggling with fears, worries, grief, weariness, loss. 

God will see you through it, it took a long time for me to understand this.  I wanted God to fix it, heal Curt, make this nightmare all go away, make life easier.

But He didn’t

And after 5 years of struggling through all of that, I am now emerging from the cocoon of His provision.  I now see that His grace is sufficient, and God’s strength is what has sustained me. 

2 Corinthians 12:9

And He said to me, “My grace is sufficient for you My strength is made perfect in weakness.  Therefore most gladly I would rather boast in my infirmities, that the power of Christ may rest upon me.

It has taken me 5 long years to understand that and believe it. I am only starting to understand the GAIN of LOSS.  What I have gained in relationship to the Giver far outweighs our loss.

Hang in there dear one if you are struggling, rough days may not go away but if you keep seeking and pleading, God will see you through it. The Gain of Loss is yours to find and cling to in the storm.  ❤

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Curt in his new facility!  The transition went really well….yes He is seeing us through it!

 

 

 

 

 

 

 

 

 

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.

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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! 🙂

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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.

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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~

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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!

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So how is Curt these days?

Curt was chatting on the phone the other day with a friend, and I could hear him saying, “Dude, you got to get him on a solid team……….”

And there for a brief moment life seemed really normal.  Curt was giving advice to a friend about baseball.

  Friends would always call him and seek advice, wisdom, counsel etc on an array of things from sports to finances.  But as I am slowly starting to realize, those moments are fleeting, and are fading into the black hole of Alzheimer’s.

In the last 2 months Curt has really struggled and has gone from bad to worse.  I am painfully aware of his decline and am working to adjust.

So what have I noticed you may ask?

Overall he did pretty well with all this crazy traveling we had this summer, new hotels and a fast paced schedule were a lot for him to keep up with.  He pretty much just followed me around and would conk out each night around 8:00.  But the biggest problem came when we returned home after our first tournament in June from Myrtle Beach.  Previous to the trip Curt was still doing a few household chores, he would take the trash out and load and unload the dishwasher.  But when we returned home after being gone for 5 days those skills were completely lost!  He had no clue how to do either one and really had no recollection that he had even done those chores on a regular basis.   Along with those tasks went many of the other tasks he had grown accustomed to at home. He really can not check email or use facebook anymore, something he enjoyed up until the Myrtle Beach trip.  He is now having great trouble trying to find anything to do at home.  He mostly just sits in a chair all day, unless I find him things to do.  This is a huge change, he is suddenly VERY DEPENDENT on me for so much these days.  Getting himself dressed each day has become a chore along with several other personal hygiene issues.  He also stumbles over his words and has great trouble getting out what he wants to say.  And this may be one of the most disturbing things yet, as a long time, hard core Phillies Phan he has actually been watching the Pirates play baseball more this summer than the Phillies.  Gasp!!  🙂

I knew these things were coming, I guess I just wasn’t prepared for it so quickly and suddenly!

He is also very tired during the day and has been going to bed around 8:00 this summer, which is so weird for my night owl husband.

The spatial issues of life continue to elude him also.  Actually the best I can tell his spatial perceptions are totally gone, he can not write at all anymore, even lying down for bed at night he gets confused as to which end of the bed is the right place.

I like so many of you thought Alzheimer’s was just a memory problem, but as you can see it is SO much more then that!

So as summer wanes and turns to fall, I will be searching for someone to provide some kind of companion care for Curt during the day.  I don’t feel comfortable with him being home alone the entire day while we are away at school.  Who would have thought we would be at this place already?!?!

But I do cling to the fact that somehow God knew we would be, and He will continue to provide for us. 

So do pray with us for a sports loving care giver for Curt during the days! 🙂  Ok, well just pray for the right person. 🙂  God has someone I know it.  He has met our needs many times through such wonderful people, and I am learning more and more to trust that He will continue to do so.  I just need a reminder every now and then about that, mostly in the middle of the night when I wake up worrying. 🙂