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!

 

 

 

 

 

 

 

 

 

The Walks of Life

IMG_6316Curt now spends a great deal of time in a “Broda” chair,  it’s a like a recliner on wheels. As of late he has not been content in the chair, he moves his legs in the chair constantly, sorta rocking it up and down in an attempt to get up.  The problem is, if he does get up and walk around, he gets tired easily and becomes a fall risk.  It’s one of those difficult situations, with no easy answer.  However, I have noticed he calms down immensely when I walk the hallways with him in his chair, his sporadic, uncoordinated movement begins to ease up and his eyelids grow heavy.

So lately I have been spending a lot of time walking the halls of the memory care facility with him.

During our walks, I often find my thoughts drifting back to another  big walk we  took together.  I remember walking the halls of our local hospital all through the night until the sun came up while in labor with Tyler.  We walked, we talked, we prayed and anticipated our future together as a family.

Now we walk the halls of a memory care facility, I can barely understand anything Curt says anymore, he is either awake, agitated and antsy or tired, calm and serene.  He still smiles and laughs, but not quite as frequently as he did.

Our dreams for our future at the hospital that night in December, have now faded into the black hole of Alzheimer’s.

And I guess that is why I have struggled as of late to update this blog…….I have been grieving.

I  had a rough winter….not horrible, but for me, and my usual optimistic self it has been difficult.

I am weary

I miss Curt and his wisdom, guidance, care and companionship

I miss the kids since they are both now at college

I am weary

I am tired of taking care of everything and making decisions with out Curt’s wisdom and insight.

I am tired of taking care of taxes and filling out the FAFSA (ha ha, ok that is just something Curt would thrive taking care of, I on the other hand DREAD it all)

I am just tired, stuff bothers me more, there is always this huge cloud of uncertainty hanging over my head.

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However, during all of my grief and calling out to God, I have found something.

Something I anticipated, but waiting for it was not in my plan.  I am a millennial generation baby boomer…..I don’t wait well.🙂

A treasure, a gift, I have just begun to unpack…..

I am learning to embrace the promise of Romans 8:28

And we KNOW that all things work together for good for those who love God, who are called according to His purpose.

It was a struggle for a long time, to think God is working this out for good…..like you’re kidding me right??  There is no good in having your husband diagnosed with Alzheimer’s at age 46, when your kids were 13 and 15?!  How can that be GOOD!?

But then I received a hand made prayer quilt in the mail recently from a prayer ministry in North Carolina.  As I pulled it out of the wrapped box, I was confused as to what it was.  The backside of the quilt was a busy mess, but when I turned it over, I saw the completed quilt and it’s full beauty.  If I only looked at the back of it, I would see an angry mess, in disorganized chaos.

If I just looked at my circumstances I see a deplorable, emotional MESS of chaos and loss.

But in the big picture of ALL that God is weaving together, the quilt of life comes together and I start to see how God is weaving all of this into His perfect plan.  If God leads you to it, He WILL see you through it……..it may not be easy, but He will see you through it. 

Not gonna lie, this has NOT been an easy journey, but as I look back on it the last 5 years, God has provided for us above and beyond.  He has met our big needs and little needs.

 

Okay now stick with me on this analogy……….You know how sometimes when you are out driving and you realize you are starving hungry…..Like seriously famished, I could eat a horse kind of hungry.  Then you eat some random granola bar you find in your glove compartment to hold you over until you can get real food.  You are satisfied for a bit, and you feel a little better and can press on until the big meal comes.

Well if you are still with me on this one, that is how God has been providing for us.  Sure I wish the big meal would come and make it all okay, but the little morsels of His truth, strength, and grace is what keeps me going on a daily basis. I feel a little better and can press on through the day.  His strength is what keeps me going, those little morsels of strength keep me, keeping on!

  It’s only when I look back do I see how many times He has given me that random granola bar when i needed it to get through the day.   A friend drops off a meal, someone volunteers to help with yard work at the right time, a friend stops by to see Curt, a card comes in the mail filled with kind words and encouragement, God meets our looming financial needs in BIG ways, a friend invites me out to dinner when I need it, God speaks in a big way to me through His word, I hear a song and I am brought to tears, yet ultimately encouraged through the words. 

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Oh friends I do believe God is working this out for His glory, but for anyone who is struggling with the onslaught of rough times, do know it’s not always going to be easy, and at times it will downright suck.  But in the big picture of it all keep seeking, pleading, praying. Remember to snack on those random granola bars of provision that God sends your way to empower you to press on. Your life may look like one hot mess of grief and sorrow, but the Master quilter is bringing this mess all together for His Good.  Press on!

2 Chronicles 20:12 ……….We do not know what to do, but our eyes are on you!

 

Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
‘Cause love sees farther than you ever could
In this moment heaven’s working
Everything for your good

~Danny Gokey

“Tell Your Heart to Beat Again”

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~thanks for walking with us on this journey~

 

 

 

 

It’s a Wonderful Life

Yesterday while out doing a ton of Christmas type errands, I made a quick stop at our local credit union that has the Care For Curt account set up. Someone had graciously given us a $1,000 check last week and I wanted to deposit it.  I stepped up to the counter and went to hand the check to the teller ( who is one of Curt’s former students by the way) when panic set it.  I could not find it!  I checked my pockets, my wallet, went back out to the van, looked around the parking lot thinking I may have dropped it….the check was no where.

As I scoured the parking lot for the check I was having thoughts of the scene from “It’s a Wonderful Life” when Uncle Billy lost a HUGE bank deposit.

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If you are familiar with “It’s a Wonderful Life”, the lost money is a catalyst for the movie. Things begin to unravel pretty quickly for the kind hearted George Bailey after the money goes missing.  But in the end the movie reminds us, in the most dire of situations help arrives from friends, family and the town of Bedford Falls.

Do you see the parallel?

 

We have been at a turning point with Curt’s care and I honestly did not know what to do?!

I prayed

I prayed some more

I pleaded for direction from God

I even yelled at God and told Him I hate making these decisions, and well………. I did kind of mention in a fit of anger that I sure wish Curt was able to help with the decision making. It all just pretty much poured out………….

And I have come to learn, it’s ok to bring my grief, my anger, my frustrations, my worries, and my heartache to God.

For in those moments I have gained the strength to step out in faith, to Trust God completely with the unknown future.  It’s not always easy, and at times it’s down right H.A.R.D.

But it is in those deep valleys of life that we often see something that may have been missed in the normal chaos of a busy life.

We get to see God’s provision and blessing first hand on such a deep and personal level!

 

YES, we have been blessed!

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God has  provided for us through this Go Fund Me account that was set up to help with care expenses for Curt.  It is amazing to see all the donations to the account.  We now have 3 more months paid for, Curt was to run out of money in February!

 

It is a Wonderful Life, we are so thankful for the opportunity to see first hand the handiwork of God.  We have been blessed like in the movie by our friends, family and our town!

I have learned to take a moment and pause…..it’s hard in my task driven world to slow down.   However, when I do, it is then I see God and His goodness and provision first hand.

Do you see how even in the hard times, it is a wonderful life!

 

So back to my check…….I found it!   Unlike Uncle Billy I did not accidentally give it away to the town scrooge (aka Mr. Potter). My overworked and weary brain simply left it sitting on the kitchen table.

But the whole incident was a good reminder to me about the priorities of life.

I showed my students a video the other day of the classic story “How the Grinch Stole Christmas.”

This endearing quote from the movie struck a chord with me this year:

And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”
Dr. Seuss, How the Grinch Stole Christmas!

 

Yes Christmas does mean SO much more than all those gifts under the tree, and our sweet family traditions.

It is about a dear baby born in  humble, destitute surroundings that came to change the world.

Lyrics from O’ Holy Night
Truly He taught us to love one another,
His law is love and His gospel is peace.
Chains he shall break, for the slave is our brother.
And in his name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
With all our hearts we praise His holy name.
Christ is the Lord! Then ever, ever praise we,
His power and glory ever more proclaim!
His power and glory ever more proclaim!

 

Christmas is so much more to us this year, our greatest Gift is Jesus and God’s ongoing provision for our family.  Thanks for lovin on our family!

Merry Christmas….. It is a Wonderful Life, may we all pause this Christmas to see it.

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P.S  Are you allowed to have a P.S on a blog? :)  This is 2 blog posts with in the last 2 months….that my friends truly is a Christmas miracle! ha ha

 

 

 

 

 

The Storm

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3 weeks ago just as I was settling in for the night, this random storm hit out of no where.  It had been a rainy day, but I had not anticipated anything like this as I am a bit of a self confessed weather geek.

I was upstairs, as I heard the winds pick up outside pretty quickly. I decided it was best to go to the main floor of the house, as soon as I got there I heard all kinds of debris hitting the house, i immediately  headed to the basement!

As I took refuge in the basement I could hear the chaos outside, I heard all kinds of “big things” hitting the house and I heard several trees fall in the woods.  And just as I was about to cower under the steps in the basement, the storm stopped! I emerged from the basement and made my way outside onto the deck.

It was dark out but I could tell there was damage to my deck and the yard, but I could not see the woods.

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So I anticipated sunrise the next morning so I could get a better idea of the damage.  As soon as there was enough light I was out checking things out.

Now please keep in mind, I did have damage, but in the big scheme of things, it really wasn’t that bad.

So I was surprised at my reaction.  As I surveyed the woods…….. my beloved woods, I got a little emotional and overwhelmed by the damage.  In the 20 years we have lived here I have never seen it this bad.  There were some 10-12 trees down between our house and the neighbors and I  had some minor damage to our deck, some siding and the gutters.  But just looking at the carnage of it all really got to me.  I survived the storm fine, but it was seeing the wrath of it all laid out before me that really got to me.

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The aftermath of the storm got me thinking……that is kind of how my life has been the last 5 years…….a STORM!  It has been chaotic on so many different levels,  working full time and raising two busy, sports minded teens and taking care of dear hubs has been a storm.  I can not even begin to describe the constant chaos and surging emotions that we have dealt with the last 5 years.  But alas, both kids are off to college and Curt is well cared for at a memory care facility…..and I am left home to survey  the “storm damage” from the last five years.

When your life is crazy you focus on the big picture and learn to leave some of the details behind.  You learn to look beyond the giant clothes pile on the floor and focus on the fact that you have clothes to wear to your job/school each day,  you let the garage go and just throw junk in there that you are too busy to think about what to do with it, your landscaping over grows, you have dog pee on your carpets and you don’t care,  you don’t follow up with routine household maintenance, you miss your dentist appointments and the dog doesn’t see the vet for 2 years….you get the picture…..and you know what,  it’s ALL OK…..you are too busy to deal with the details, you surviving each day.

But now, I am slowly picking up the pieces of the chaos.  People often ask me what I am doing now that I am an “empty nester”

Well let me assure you sipping tea and reading a book isn’t in picture quite yet.  There is still much to take care of,  catch up on, and slowly start to return some degree of normalacy to our very not normal life.  It is like I am slowly re-entering the world again.

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It’s a real weird place to be right now, I miss Curt terribly.  The Curt I visit every day is sweet, cute and so endearing.  While I am happy he is that way… Curt  was not a cute, endearing guy.  He was man’s man, he hated to shave, he sweated up a storm while playing drums, he watched football with a passion and yelled loudly at the TV during a game, he ranted about politics and trash talked anyone about his Eagles,  he loved to pitch baseball endless hours to Tyler and had a goofy engaging sense of humor.    That was my honey!  :)  And I miss that guy.

 

But through all of this the ONE thing that remains constant with  Curt is his passion for the Lord!  He loves when I pray with him, he verbally eeks out those amens as we pray together.  He still cries every time I play the Chris Tomlin song, “I Will Rise” and he sits so calmly when I read the bible to him.

Yes it’s been a STORM, But God reminds me constantly of Job 2:10, when Job speaks to his wife and says:

..You speak as one of the foolish women would speak.  Shall we receive good from  God, and shall we not receive evil?……

And the words of Philippians 4:11 frequently echo in my mind:

Not that I am speaking of being in need, FOR I HAVE LEARNED IN WHATEVER SITUATION I AM TO BE CONTENT.

It’s hard, honestly it sucks at times…….. but do you see the word learned?  It’s a reminder to me that I am learning, it’s a process.  Some days are really harder than others….but I am learning to be content and TRUST God’s plan in the storm.

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~And our crazy journey continues, as I met with an elder care attorney today to make plans for the future and will probably have to move Curt to a new facility.  Things get kind of complicated as we run out of money to private pay in March, so I am checking into Medicaid funding for Curt.  Prayers are appreciated as we move forward, there are no real easy answers in terms of funding with this disease.

 

Curt on the other hand is actually doing pretty well.  He was recently taken OFF of hospice care since his weight remains stable and he has not had as many falls.   He has been stable for the last 6-8 months or so.  He laughs a lot, eats well, is tired frequently, his face lights up when he sees me and still knows the kids and his friends and family.  He loves to listen to music, and  will often say with clarity when listening to music when a cool drum part is coming up….”wait for it” He rocks out to that 80’s rock, stuff he played in his teen years.  His speech is hard to understand, I only know about 10% of what he says.  But he smiles a lot and that makes a hard pill a bit easier to swallow.🙂

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The kids and I at Liberty Univ. about 3 weeks ago on a lovely fall weekend.  Pressing on and making new memories. Trusting the Lord and His Plan.

Dearest friends, thanks for being there for us IMG_4527

$5.29 Please

I ordered the same peanut butter cup ice cream treat I have been getting  Curt for the past year, but this time was different.

‘That will be $5.29,” the man at the drive-thru told me.

He had quoted the price to me numerous times since Curt entered the memory care facility last July.

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But today for the FIRST time I realized this “Avalanche” that I have been buying at least once a week for Curt cost $5.29!!  $5.29…who knew?

I know you are probably confused at this point……how did I not realize the cost of that “Avalanche.”

 

It’s simple folks……… through the chaos & busyness, I was hearing the man but not really hearing him for over a year now.

But as summer lingers on and my life FINALLY slows down a bit, I finally heard the man.

You see,  I would usually roll into the ice cream place, cruise up to the drive-thru, announce to the man,

“One large peanut butter cup Avalanche, with a lid on it, in a bag….please”

He would say some price, I would get my ice cream and be on my way………….crossing another task off my lengthy mental to do list as I pulled out of the drive thru. 

Getting that ice cream became another task on the ever growing list, another task, a task I needed to do, and it was now DONE.  The details eluded me, but who cares because the task is DONE!!  There are now 10 other new tasks to move on to!

It seems like for the last 4-5 years that is basically how I have been living.   Some weeks were more crazy than others.  Summer provided some relief, but I was also driving the kids all over the east coast for baseball or lacrosse and then driving to college visits.

This is my first summer in five years where I am home!

I have some free time!

I can relax some!

 

But here is the problem, I honestly don’t know how to relax……….

I know, you are like really Sandy?

You just chill, relax….how hard is that?!?!? Hello?!

Harder than you think, I have been task driven for so long, it’s kind of weird to have a smaller list with time to accomplish the things on it.  Also time to think about ONE thing at a time and not FIVE at a time. 

My brain has such trouble focusing, I am so used to moving from one thing to another constantly!  I have actually tried to start a book and get about 2 pages in, and my programmed brain tries to move me onto the next task on my list.

But alas I believe I am heading in the right direction, thus my new awareness of the price of an Avalanche!

And thus my start of another new normal……….

 

I know it’s been long since I last updated my blog, honestly I just could not manage another “thing” on the endless “to do” list.

But finally on this second week of July I find I have some time and even renewed energy to produce some kind of blog entry!

Life has been has been a roller coaster ride for sure.

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This past spring Madi graduated, which was a huge milestone.  She had quite a journey with high school, as Curt was diagnosed with Alzheimer’s when she was in 8th grade.  Her high school days were different from some with having her dad plodding along through the stages of Alzheimer’s, but we also worked hard to keep things real normal for her.  She was involved in a ton of clubs, loved playing lacrosse, kept those grades up (4.0!) and discovered a passion for ceramics along the way.

IMG_2021Just need to add that this cool pottery creation is an actual working fountain.

Pretty darn proud of all her accomplishments through high school.

So proud to see her walk across the stage to receive her diploma in June.

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Oh such a journey………

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As for Curt, he continues to slowly slip into that depths of the black hole of Alzheimer’s.  I now  find myself only understanding about 20% of what he says.  He is also much more tired during the day and has fallen several times as of late.  It is such a brutal disease to watch someone slip into.  I think so many times of how mortified Curt would be to see himself at this stage of the disease.  He has lost weight and is moving so slow, he struggles to even lift his head certain days to look me in the eye…..a far cry from my athletic, agile and witty husband.

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Yet through it all……it is well.  I think the lyrics to this song on constant play on my iPhone seems express how I feel about the last 5 years.

Through it all, through it all
My eyes are on You
Through it all, through it all
It is well

Through it all, through it all
My eyes are on You
It is well with me

Far be it from me to not believe
Even when my eyes can’t see

And this mountain that’s in front of me
Will be thrown into the midst of the sea

So let go my soul and trust in Him

(It is Well/Bethel Music/Kristene DiMarco)

 

Yes folks, it is hard, I am not gonna lie and say this has been easy by any means.  Its NOT!  Yet………I truly can say It is Well, there is a certain contentment found when relying on the Lord and trusting Him for the future that allows me to say……It is Well.❤

Hoping to blog more,

Sandy

 

 

I have learned so much

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I remember the moment well…..It was about 4 and half  years ago, I was at Madi’s cross country meet.  Shortly after the gun went off for the start of the race, Curt called me.  He had just finished his 5 hours of memory testing with a neuro-psychologist.  The Dr. was asking that I come in for the follow up appointment and Curt wanted to know what day worked.  It was at that moment, on a brisk fall day during a cross country meet, I had this sinking feeling of the storm that was to come.   He then called me back as he left the office and told me how miserable he had done on the testing.  He explained to me how he could not draw this “stupid” clock he was asked to draw, how he could remember details of a story passage that was read to him but had no idea the over all story line, how he could not even draw a simple square to start a 3-D drawing and on and on he went.  Just as I saw Madi  coming towards the finish line to medal in this meet, I stood there also hearing the words from Curt that would change our lives forever. 

And so began our Alzheimer’s journey at age 46.   So on this snowy day in March, I find myself  thinking back on all that we have endured that last few years. And there have been many ups and downs on our roller coaster ride.  I also realize all that I have learned along the way!  So here are my random thoughts today….warning they are random!

Curt and I really did have a good marriage.  Things got a little muddled and not so good about 2 years prior to his diagnosis, but now I realize what I was seeing was not the start of marriage problems, it was Alzheimer’s. 

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A sense of humor goes a long way in a marriage.  The ability to laugh at your mistakes and laugh with each other is a gift.  I can’t tell you how I miss so many of the silly sayings we used to say to each other and our stupid jokes. Sometimes,  I can still say them and get Curt to laugh…..but other times it is all forgotten.

Curt always used to say in a fun loving, yet serious way, “Got to please the babe.”  Meaning he was always about what he could GIVE to a marriage not what he could GET from it.  He always led with that example well, but some times as in any marriage that attitude would get lost, but I see now more than ever that was a driving force in all he did.  I still see a glimpse of that attitude from him now and then amidst the Alzheimer’s brain fog, it reminds me of how deep rooted his desire to give more than get in our marriage was.

So many of the little annoying things that Curt used to do, really don’t matter now.  If I could go back and change something,  I would not let those things bother me.  I see now how in the big picture of life, dumb stuff like that is a waste of time to get caught up arguing about.  So what if I would do something different, his quirky or annoying things were Curt and that was who he was, and it’s those things I even miss!

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  When helping someone in a crisis or in great need…..it’s the “doers” not the “sayers” who make a difference.  Many people mean well and say so many nice things and offer to help, but it’s those who take action that make the biggest difference.  Those that help with the practical stuff.  There were times that our dirty laundry pile was so huge, I would just have to wear “dirty” clothes to work ( true confession folks, but when life is crazy I was just happy to show up to school what I was wearing really didn’t matter, I was there).  I would find what I needed from the laundry pile stick it in the dryer with a dryer sheet and then wear it.  There were several times when a dear friend and Curt’s caregiver would help with the laundry, THAT WAS A HUGE HELP!  Someone even came and cleaned out my fridge one time, really you get over being embarrassed about the moldy stuff growing. :)  It was those practical, hands on things that helped so much.

I have learned a lot about trusting God.  We often say we Trust Him, but geez, I said that, but did not truly Trust God.  It’s so easy to trust when things are going our way.  But the real struggle is learning to trust God when things don’t go according to OUR plans.  I have prayed, yelled and screamed at God and begged for my plans, goals, and wants to succeed.  I often have felt God did not answer my prayers……but I have come to realize He has answered them according to His plans not mine.  He sees the big picture, I see a glimpse of it and think I know what is best.  But I am always reminded of Proverbs 3:5~TRUST in the Lord with ALL your heart and lean not on your own understanding. ~ I had heard that verse a million times, but now I think I really get what it means!

  And that’s it for now……..lots more I could share, but I must also get those FAFSA’s filled out and get all my tax info together on this snowy day. We appreciate your ongoing prayers for the uncharted waters that lay ahead.  Its been a crazy journey for our family.  I do see the wear and tear of it all starting to wear us down a bit.  Thankfully, Curt at this point is pretty stable lately.  He has some rough days and moments but over all seems pretty steady.  He still retains that great sense of humor.  Just the other day one of the staff members was teasing him, saying, “you wanna go?!”  (Curt would always say that, and try to fake fight ya) Curt smiles, and replies clear as could be, “I don’t want to hurt you!”  He is my honey through it all.❤  

Oh my, This is Embarrassing!

Oh my the last time I wrote a blog post was in September!
 4 months since I posted on this ole blog of mine.
Where do I start so much has happened…
I have been so busy….
I have been overwhelmed and honestly, tired.
Tired of living in chaos, tired of always being tired, tired of dealing with migraines, tired of being responsible for everything, tired of making decisions on my own…………
Where do I start……Let me start with Josh……….

 

I was at our local Target one night a few weeks ago.  I hear a voice calling out my name, as I glance in the direction of the voice, I see a young special needs man waving at me with a big smile on his face.  I recognized him, but I just could not remember his name.  I was confused, I didn’t think he was one of my former students, but how do I know him I wondered?
I went over to say Hi, and he gives me a big hug, and immediately says, “where is Mr. Morris?”  It’s then I noticed the young man is wearing an Eagles football hat.  Then it hits me………..
This is NOT one of MY former students, this was a student that Curt used to love to trash talk football with while he had cafeteria duty.  This young man attended our high school before I started teaching the special needs group I have now.
He wanted to see Curt, not me, I was hopefully just a way to get to Curt.  Josh was so eager to talk football, it all spilled out, he wanted me to tell Mr. Morris all of it, every bit of his onslaught of trash talk.  “Don’t forget anything I told you, tell him all of it” he prodded me with an exuberant smile on his face as I turned to leave.
Curt with D and SI cried as I walked out of Target into the brisk, cold wind of that gloomy evening. I thought, Oh how I miss Curt, how I wish he could trash talk football with everyone (and trust me he did it well!).   I miss him around the house, I miss him watching Fox News while I was still trying to sleep on school mornings, I miss him yelling at the TV during football season, I miss his drum playing,  heck I even miss him while shopping at Target.  I know you are thinking he is still here, but really, so much of him is gone.
I yearn for those engaging glimpses of his fun sense of humor when I visit.  I love seeing his hands start moving to play drums when I play music, I love when I see his sweet smile and how he tells me every time he sees me he loves me. 
  But that is all they are……glimpses.
I have heard people say when a spouse has Alzheimer’s, it’s like being a “married widow.”  That is a good way of explaining it.
 
And that I think accounts for my lack of blogging lately…….simply, I am tired and overwhelmed.
It’s been a long 4 years, Oct 1st 2010 Curt was diagnosed, but Alzheimer’s had been lurking in the shadows for at least 2 years before that.   I have been the one leading the family charge for sometime now, getting the kids through sports, college visits, teaching them to drive, college apps, paying the bills, walking the dog, laundry, car repairs and car wrecks, yard work, back surgery, emergency appendectomy, two broken ankles for Tyler….oh the list goes on and on and on……
family pic thankgiving
But I have also learned that is exactly where God wants me to be at a loss, having no strength to press on.  Realizing I can NOT do this on my own.
It is only as I daily seek His strength can I muster the daily fortitude to get up and press on.  When I lose that focus on the Lord I tend to grasp at frustration, negativity and hopelessness.  It’s such an easy ploy when life throws you more than you can handle.
As I embark on 2015, I am taking a moment to reflect on this journey, to focus on how God has met our needs in ways I could never have imagined, and how I have learned that He alone gives me strength daily to lift my head and press on!  So today as I head back to school after a much needed break, I am thankful for the many lessons learned on this journey.  Including a big one, a constant reminder that my ultimate goal is not to be able to fix everything and control everything but to simply seek first the kingdom of God and commune with Him and trust God to take care of the rest!

Happy 2015 Friends!

Curt with Santa
So much has gone on with Curt in the last few months as he continues to decline.  He was placed on hospice care about a month ago.  He had lost a lot of weight and has struggled.  But hospice care has been a real help and support.  I am going to leave you with this video link from a TV interview I did a few months ago on having a spouse with Alzheimer’s.  Just click on the blue link to view it and see the article.
WGAL The New Face of Dementia
And hopefully I will be back here blogging again
before 4 months pass  😄
 
 
 
 
 

 

He Knew

The summer of 2009 we vacationed at one of our favorite places, the Adirondacks in NY.

We went tubing through a really cool chasm, slept in a tent in a pine forest, hiked the breathtaking chasm, relaxed several days on the shores of Lake George, kayaked for the first time, hiked a 4,000+ mountain together and just enjoyed family time together.

Fast forward to this past summer as the kids and I spent a week together in the Adirondacks. The kids hiked a 5,000+ mountain, we swam in a creek, the kids went cliff jumping, we rented a boat on Lake George,  relaxed at the pool, drove up Whiteface Mtn, we kayaked & paddleboarded, we embraced the fresh air and natural beauty of the area.  Once again we enjoyed family time together at one of our favorite places.

Top of whiteface

While in the ADK’s this year, it occurred to me probably for the first time…… Curt knew.

We drove up Whiteface Mtn and I got to the top of mountain and was looking out over the beauty of mountains at the shores of Lake Placid  I realized……..he knew.

Back in 2009 before we knew  the horrors of dealing with Alzheimer’s, Curt had an inkling of the storm to come.  (He was diagnosed Oct. 2010)

He would pause on that 2009 ADK trip to cherish and take in the beauty of it all.  He teared up a bit while touring the chasm astounded at the beauty of it all.  He reflected on it’s majesty comparing it to heaven and telling me how he longs for that day to be with Christ in the heavenly realms.  He would remind each of us that day to slow down and reflect on all that God created, and savor it.

Ausable C C

I on the other hand remember thinking to myself……Geez Curt aren’t you being a little dramatic, this isn’t like you to get all emotional about this stuff…….. I agreed with him in word but really didn’t give it much of a thought………until our recent trip to the Adirondacks.

 

As I stood at the peak of Whiteface Mountain looking out and embracing the vast majesty of it all, I remembered Ausable Chasm and Curt’s words of wisdom and insight.  He was tuned into hearing God’s voice and striving to make the most of his time on earth.  I on the other hand continued rushing through things, planning the next event of vacation, figuring what to eat that night for dinner, my mind was constantly going.  But I was not taking the time to pause and reflect on the things that truly matter.

C on top of rocks

Curt knew……he kept encouraging me to slow down in that lovely Chasm to pause amidst my busyness.  To keep Jesus at the forefront of it all, to see His majesty in the natural beauty, to yearn for the things of Christ.

But I would meekly protest that dinner had to be prepared around the fire, the kids had wet clothes from tubing we needed to get back to the car and change right away, it was getting cold and they were wet……yet he persisted with dawdling behind and just taking it all in.

C at lake george

He knew spending time with the Savior was what really mattered. He knew a storm was coming, he wasn’t totally sure what it was and that would take hold of his brain and totally transform it….but he knew his time on earth was short.  He even at one point told me he felt his life would be cut short and he was at peace with it.  I remember saying something like, “Oh honey how can you know for sure, really don’t worry about it.”  Yet he insisted that he felt an inkling that his life would be cut short and he wanted to honor Christ.

 

He knew……………………..

 

The day he was diagnosed, he was stoic, non emotional and proclaimed with confidence he was ready to meet his Savior.  He knew and was prepared for that day he would pass from this life to the next. When the diagnosis came, he was prepared and at peace.

I am thankful for the reminder of a life lived for Christ by my husband!!!  He was prepared when he received a horrible diagnosis of Alzheimer’s, he was at peace with it because he was prepared.

 

2 Corinthians 5:6-8 So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord.

 

John 11:23-26 Jesus said to her, “Your brother will rise again.” Martha said to him, “I know that he will rise again in the resurrection on the last day.” Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?”

Yes Curt worked to live a life for Christ.

Update on how he is doing

We moved him to a Memory Care facility on July 2 it was a rough first week or so.  But I am so thankful he seems to be adjusting.  He enjoys the staff at the facility and feels comfortable and cared for there.  I start school on Tues. this week and despite thinking the best time for Curt to move to a full time memory care facility would have been mid August…..God knew better and July 2 was the perfect time.  He is now well adjusted and I don’t have to carry that worry into the school year with me!  He is eating a little better  and I bring him plenty of Burger King, ice cream, Oreos and Snickers Ice Cream bars to keep him happy.  He still knows me as his “honey” and is always asking when I will get there! He continues to struggle with communication, it is get so much harder to understand his expressive language ( what he is saying).  Yet he seems to still have a strong receptive language ( understanding of what he has heard).  I notice him starting to interact with the other residents and that warms my heart to see him care for them.  Here is a pic of him sitting on his bed in his “man cave.”

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Unbuckling my Seat Belt

Oh hey they there blog, I know it’s been forever since I have written here.  Hold on a sec let me unbuckle my seat belt.  I have been buckled in for about 6 weeks now.  Buckled in for a pretty wild ride! 

I am just now slowly beginning to emerge from the crumbles and the chaos of it all.

So what has been going on you ask…..well where do I begin??

Let ‘s start with Memorial Day weekend………

m lax 2

Madi had qualified for an all day National lacrosse tournament in Maryland that weekend. I had arranged for the wonderful agency we were using to care for Curt to be at our house at 5:30am on Sat.   All went well and we did the same thing again on Sunday.  It was a busy weekend for Curt, but he managed.  Then on Monday I drove 5 hours down to pick up Tyler at Liberty and 5 hours back with Curt along for the ride.

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It was after that crazy weekend that I began to see Curt unravel a bit.  The ride home from Liberty was long, and he was leaning over quite a bit and kept saying, “I need to get out of here.”  He had a rough week after that, the one saving grace was Tyler was home to provide some much needed comic relief and fun for him.

Later that week, Tyler and I ventured an hour away to see a sports spine specialist about his ongoing back problems that had significantly worsened. (He literally could not stand up straight, my normally 6’4 son was looking about 6ft tall, plus he had lost about 20lbs!) The Dr. pretty much said at this point surgery is his best option. Surgery was then scheduled for 2 weeks later on June 12th.

Somehow, I continued to limp through the last  few weeks of school.  I worked in a rather lame attempt to “give it my all”, but there wasn’t much left in the old tank to give.

Curt continued to decline and needed so much more help with even the simple things after that trip to Liberty.

 Then the day before Tyler was scheduled for surgery he texted me at school to let me know he woke up that morning with a bad headache and a fever!  That pretty much sent me over the cliff……..or at least right to the edge of  it!  Through a series of phone calls with the Dr and Physician’s assistant, we decided to proceed with surgery the next day.  He would be assessed again in the morning.

He was the first person scheduled for surgery that day which meant we had to leave the house at the beautiful hour of 3:45am.  (Which means I was up at 2am, wide awake and worrying….you know something us mothers can really do well when needed!🙂 )

T before surgery

My parents came to be with Curt that morning until his regular caregiver could be there.  All went well with surgery and they pumped Tyler full of antibiotics to help with the fever and what was probably a sinus infection . (I should mention that Tyler has NEVER, EVER had a sinus infection, so I guess the day before surgery is a good time to get your first sinus infection….NOT)  We arrived home late that afternoon.  The next day, June 13th  was my last day of school with my students.

Somewhere amidst all the back surgery fog, end of school fog and the Curt decline fog….I had sat down and talked with a local reporter about a short essay I had written for the “Chicken Soup for the Soul Alzheimer’s Edition” and about living with Younger Onset Alzheimer’s in our 40’s (ok, ok …. now officially in our 50’s).  I knew the article was going to be published the weekend of June 14th, but  honestly, with so much going on, I had forgotten about it until a friend texted me to tell me how surprised she was to open up her Sunday paper to find a pic of Curt and I on the front page of the Lifestyle section!!!!!  (At that point, picture in your mind a minor freak out by me, the front page??  What?!!?! Is it a good pic? Do I look fat? How is the article?)

But there I sat at a lacrosse tourney with Curt and Madi, about and hour away from home and unable to get the paper or read it.  I actually did not get to read the article until after the tournament finished later Sunday afternoon.  It was a very sweet article and well done.  And the accolades for Curt that came as a result of the article blessed my heart immensely.

( You can read the article here)

The hoopla that ensued from the article was endearing.  Several former students got together to start a fundraiser for Curt.  They are selling T-shirts to raise money for ongoing care for Curt. (Check here for info on the T-shirt fundraiser and if you go to the site you can also see a cool TV interview with myself and Curt’s former student) I also got several letters in the mail from students,  made new facebook connections with different people who read the article and once again saw the goodness, kindness, and amazing generosity of our community.  Donations were also sent to a local fund set up for Curt.  I was AMAZED one day when I went online to check the account so I could make a payment to a local provider for Curt and found a generous amount of money has been contributed to the account.  It truly was God’s perfect timing!!!

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Then on June 17th in the crazy month of June, Curt and I had our 25th anniversary.  It was a bittersweet day, he enjoyed the specialness of the day, but  he really does not grasp the fact that we are married anymore.  But he knows I am his honey and he loved knowing it was a special day for us….so that was good enough for me.  The day was also made so special for me just by the simple care of a few good friends who went the extra mile for us/me that day.🙂

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Our honeymoon in Vt/Maine/NH 25 years ago!

 

So as Tyler was recovering well, and Madi continued with lacrosse tournaments every weekend,  I  struggled through the LONG 7 days teachers had to go to school for inservice days after the students left.  Somewhere in the chaos of it all we got word that there was an opening at the main care facility I was looking at for Curt.

So once again, I had some freak out issues, surely I was not emotionally ready for this, how do I tell Curt about moving, and on and on the issues and emotions went.  Moving Curt to a full time care facility was something I was not yet ready to do, yet I did in a practical sense feel  it was time.  But emotionally that is a whole other issue…………

So arrangements were made for him to move in July 2!  A week ago today he moved into a wonderful care facility.

And for now that is where I will leave you…..this post has already gotten VERY LONG!  Do know that it has been an adjustment for Curt and for all of us.  So continue to pray for peace for Curt during the transition from home to the memory care facility.  I will finish this and update more next week. 

C with Paisely

Curt at the memory care facility.  And yes they allow Paisely to visit!  He loves having her come along to visit.

But geez, I am exhausted just reading through this…..ha ha.  Usually when I finish a post I do try to add something God has been teaching me. 

 

But guess what folks……I got nothing. 

Not that God hasn’t been teaching me a TON.

  But for now, I am off to focus this week on the R’s of life.

Renewing

Refreshing

Relaxing

Reviving

Reading

Restoring

 

Thanks for walking the journey with us, each one of you makes this journey so much easier!

 

 

 

 

 

Running the Race

Back in the days of one flavor of Gatorade, I was a high school and college athlete.  Those were the days when orange Gatorade was the greatest thing out there, trainers at high school sports were non existent, college coaches wrote hand written letters to recruits, and we wore really cool polyester sweat pants to practice.

Yep I played soccer and ran track back in those days.  Actually for my elementary years I was the only girl in the boys soccer league.  Yep that was the 70’s before the days of Title IX.  I remember the thrill of getting to play on my first all girls soccer team in 9th grade!

But my main sport back in the day was track.  I ran the 100, 200 and 400 (ok back in the day it was the 100, 220, and 440).  And the race I remember the most was the grueling 400.  It was a sprint, one lap around the track.  But honestly how can you sprint one lap?  So you had to train and come up with a strategy on how to attack that race.  Go out hard, stride the back stretch, keep good form, and finish strong coming out of the last turn.   It was the finish strong part that was the hardest.  How can you finish strong when your legs felt like jello!

track team soph year

The biggest part to finishing strong was training hard.  Running 100 and 200s to work on speed and running 450’s and 600’s to work on that endurance piece.  I remember training so hard at times that I actually threw up once after a race and once during practice.

 

But the thing  I keep thinking about lately is in order to finish well, I had to train hard.

 

And train hard, and work hard……it wasn’t easy at times (um, remember the puking after practice!).  There were many times I didn’t feel like going to practice or running that 6th 200 of practice or 4 400’s then a break then 4 more.  I was dying out there…..but I kept pressing on, I kept working hard.

Over the years I qualified for the state track meet several times and I still vividly remember the finish line at that meet.  I remember coming out of that last turn with my eyes squarely  focused on THAT finish line.  It was at that moment with my eyes focused on the finish line, I would find out if all my hard work paid off….did I finish well?!?!

state ribbons 

I am drawn to the memory of that finish line a lot lately.

 

I am drawn to the memory of working hard to finish well

 

I am drawn to the memory of how hard it was at times, how I didn’t feel like working hard some days!

 

I am reminded about being weary and tired yet continuing to press on.

 

I am reminded of this bible verse, that I memorized in college shortly after I stopped running after tearing my ACL.


Hebrews 12:1-2

New International Version (NIV)

12 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

I am not going to lie, it’s been a rough year!  A rough school year for this tired teacher, a long winter, and a year filled with many unexpected challenges and frustrations, along with Curt’s ongoing digression with Alzheimer’s.  Just this week, Curt asked me if I had a boyfriend?  He had no idea we were married.  He wants to “go home” at night, and gets so mad at me when I don’t take him home.  It’s hard.

But…….I am running the race, working hard, training hard and persevering.  I am fixing my eyes on Jesus. 

And my eyes are fixed on the finish line, because when all is said and done, how we run this race for Jesus is all that really matters.  The race may be hard, but may we all finish well!

Pressing on………..

family Easter

 

 

 

 

 

So where have you been?

Jesus Dark Chocolate – Well thanks Sandy for FINALLY sitting down to  chat with me.  You have totally deserted me the last month or so! Where have you been?

Sandy- Well thank for contacting me JDC, and setting up this interview.  I know I have been MIA the last month and  a half.  My goal is to update this great blog, once a month…..but yea that didn’t happen in February!

Jesus Dark Chocolate – Was February a real stressful month for you?

Sandy – Well no, not more than the average chaos and stress…..actually I pretty much call chaos and stress normal.  Let’s see….. a  water pipe burst in my garage, my heating unit in the house was down for a day and a half, I had a minor woman surgery with pre-op appointments and follow ups (fun times!), we found out Tyler has a herniated disc in his back and I shoveled the driveway a lot with all the crazy winter storms.  But really it seems the stresses of life don’t phase me as much anymore.  If I had a normal, stress free life I think I would get bored!  But I do miss having Curt along my side to help with running the household and the decisions of the day.  I miss his wisdom and insight.

C and I

Jesus Dark Chocolate – Well it does sound like February was an interesting month for you.  How is Curt doing these days?

Sandy – Well……… I have been slowly watching him slip away for 3 years now.  You would think it would get easier to handle when he continues to falter and struggle.  But it doesn’t.  Just the other day he asked me what my name was.  And last night when we got home fairly late from Madi’s lacrosse game, he wondered what “this place” is?  It was our house, our house that we have lived in for 19 years….and to him, it was just another unfamiliar place.  It’s an ongoing grieving process……Nancy Reagan said years ago when referring to the late President Reagan and his diagnosis of Alzheimer’s, “it truly is the long goodbye.”

C enjoying HC

Jesus Dark Chocolate – Oh you are right, it is a slow, demoralizing good-by.  Well changing the subject a bit, What is up with Tyler’s back?

Sandy – When he was home for Christmas break we thought we were treating a hamstring injury.  But as the hammy started to heal, we realized what he was also feeling was nerve pain and tingling in the leg.  We figured it out and took him to our chiropractor.  But he had to return to school 5 days later.  The trainer and the staff at college treated him right away with PT, traction table, chiropractic care etc.  But one night, while simply brushing his teeth, everything went from bad to worse.  He is currently getting epidural steroid injections in his back.  He just received a second two weeks ago and is schedule for a third on Wednesday this week.

JDC – Well that is a total bummer for Tyler.  How is he handling it and how are you dealing?

Sandy – Tyler is bummed and really misses playing baseball, but he is a Morris and continues to stay positive and is truly seeking God’s wisdom and direction in this. Me, well that is another story.  I miss watching him play!  I feel like our normal life these days is stressful and emotional, and watching him play provides a moment of escape from the worries of the day.  Does that make sense???

JDC – Yes it does make sense.  Well all of this sounds pretty discouraging,  I mean just listening to you, things  sound pretty depressing!

Sandy – Well my friend (oh I mean my blog),  it has been pretty depressing!  But that is the beauty of it all!

JDC – Oh I missed that life lesson, there is beauty in discouragement??  I am not really with you on this one!!??

Sandy – Well trust me, I was really missing it too.  But then one, FRIGID night when I was out walking the dog, and  praying.  The tears rolled down my cheeks and nearly turned to ice and  God spoke to my heart about Proverbs 3:5-6

Trust in the Lord with ALL your heart and lean not on your own understanding;  In ALL your ways submit to him, and he will make your paths straight (NIV)

I have heard those verses probably thousands of times over the years and had become rather numb to it’s meaning.  But on that night it was the part Lean Not on Your Own Understanding, that really punctured my soul and spoke to my heart.  In my own understanding Curt having Alzhiemer’s, Tyler having a herniated disc in his back his freshman year of college on a baseball scholarship…… make NO SENSE!  You can’t help but ask, Why does this stuff happen to us. 

But the verse says, Lean Not on Your Own Understanding, it may not make sense to us.  But the Bible still tells us to trust.  And let me tell you THAT is hard!  Real hard for this mom.   But in these discouraging, depressing times, I am truly surviving on God’s strength alone and in that I am learning to trust.  To trust that He has a plan in all of this, and I don’t have to like it! 

Yes, Trust, God is in charge, He never said I will see how this is all working for some good, but I TRUST that it will.  Yes I trust, despite my tendency to kind of think I have a better plan than God’s plan……. 🙂

I am learning to try to stop carrying the burdens alone and to Trust the Lord for them.  Madi had the flu  this past week and was  down and out for the past SIX days! But once again I am reminded to trust the Lord with the burden/worries of the day!  It’s not always easy…….

JDC – Oh that Trust thing can be tough, Trust me I really don’t get it!🙂

Sandy – Well JDC I am just starting to get it, I have a feeling it’s a process.  But I am thankful to be at this place on this crazy journey!

JDC- So how can friends pray for your family?

Sandy – Well do pray for WISDOM with decisions as we move forward with Curt.  I need to start deciding on how to proceed with care for him.  I am good through the rest of the school year, but it’s next school year and even this summer I am worried about. Our wonderful community help to raise almost $10,000 for our family through Alzheimer’s Awareness nights at our high school basketball game.  This money has allowed me to contact an agency to help provide much needed personal care for Curt.  I am so thankful for the support from our community.  But I just need some direction as we move forward.

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Also pray for Tyler’s back, the kid breaks 2 different ankles last year during basketball season and a mere year later he is dealing with a large herniated disc in his back.  He gets one more epidural steroid injection, if it does nothing we will have to consider surgery.  So please pray for wisdom and healing for him!

Athletics Headshots portraits. December 4, 2013. (photo by Les Schofer)

And it’s spring sports season.  That means life gets a little busier for Curt.  We will be sitting outside at Madi’s lacrosse games.  Those kind of outings are just getting harder for Curt to endure.

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And just pray for me……….

JDC – Well thanks for getting back in touch with me your favorite blog!! Now go enjoy some dark chocolate and a cup of coffee!  Stay in touch!

 

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