Tag Archives: alzheimer’s

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

How do you do it?

People frequently ask me how I stay so strong and positive?  How do I deal with all the crazy emotions of watching my sweet husband slip into the deep, deep black hole of Younger Onset Alzheimer’s Disease? How do I get it ALL done?  I often jokingly say, “lots of coffee!”

snow pic 1

But in reality…….I don’t always stay so positive and strong, I hate the emotions of watching Curt fall prey to the grips of a demoralizing disease, and I forget things all the time and simply don’t get it all done. I hate the chaos of a life filled with trials, unexpected calamities, and hardships of taking care of everything.

I guess people think I get it all done since I show up to school each day with matching clothes and a smile on my face.  And to me that alone is an accomplishment!

And maybe just showing up with a smile is half the battle……ok matching, clean clothes is a battle too.  But when you are walking a tough path, you learn to celebrate the little things….like matching socks and clean clothes that were actually on a hanger and not at the bottom of the laundry basket! :)

Yes you celebrate the little things, the 10 minutes of a quiet walk on a still night with the dog, a few moments with a hot cup of coffee sitting by the Christmas tree in the morning before the family wakes up.  Those little moments you cling to them, they sustain you. 

I no longer think about the things I wish we could do and go to.  Or get consumed with the thought process of “if Curt didn’t have Alzheimer’s we could………..” Or even the pangs of yearning for a normal life, that is simply futile and gets me NO WHERE….except depressed! 

snow pic 2

So I cherish those moments, those little things, and it’s in those moments I find that Peace that does surpass all understanding in this storm of life. 

Yes those little joys that we often miss in a busy life, those moments…….Yes those precious moments I cling to them, embrace them and welcome them!!! 

The other day with all the snow on the ground, Tyler noticed the footprints in the snow indicating  someone had walked around back in our woods.  He said to me with a smile, “Mom I know those tracks in the woods are from you, you probably walked back there and took some pictures of the pretty snow!” 

snow pic 3

Yes he was right I did!  That was ONE of those precious moments, walking in the peaceful woods as the snow seemed to embrace each tree with such beauty. 

Oh, don’t we all need those moments!

Yes it’s Christmas, a chaotic time of year, the struggle to get it all done.

But I am learning more and more, the perfectly wrapped presents, the perfected Christmas morning cinnamon rolls, the yummy Christmas feast, the cute Christmas outfits are not what it is all about.  Sure, they are fun traditions and truly bring a family together. 

But deep down what I have learned is the importance of those moments, a pause in the chaos to reflect upon a simple truth of a Savior born to redeem a sinful world. 

Yes it’s in those moments of reflection, that is where I find my true strength!

Light and life to ALL He brings
Ris’n with healing in His wings
Mild He lays His glory by
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth
Hark! The herald angels sing
“Glory to the newborn King!

Yes Glory to the Newborn King! 

Enjoy a few moments of reflecting upon the Glory of the Newborn King this Christmas, trust me when I say, that is where your strength for each day comes from!

christmas 2

Merry Christmas friends!

christmas 1

Alzheimer’s and Thanksgiving

It has been a long time since I have updated my blog…….life got a little busier than I anticipated.  Honestly, I really thought once Tyler left for college things would get a bit easier.  Maybe it was wishful thinking, but I am quickly finding out it’s not reality. I am realizing it’s harder for me to leave home, I always had Tyler OR Madi who could stay with Curt and it made it pretty easy to leave. Now with just Madi,  and with Curt’s skills diminishing I am reluctant to leave him as much.  I miss having another driver around the house, I am back driving Madi everywhere and have no one to run a few errands for me. There are several other factors lending itself to my continual feeling of being overwhelmed….but yes, not something I want to talk about on a public blog.

But I have digressed……..the title of this post is Alzheimer’s and THANKSGIVING.  And despite all that Curt continues to loose in terms of skills and a digression in activities of daily living, I have found that three things still remain.

C at Liberty baseball

Curt continues to have a passion and a love for the things of Christ.  Christian/Worship music continues to bring tears to his eyes every time he hears it.  We can be driving somewhere and I will be playing a song (Like Chris Tomlin’s “I Will Rise” Jeremy Camp “Overcome” or “Where I Belong” Building 429) and I look back and the man has tears streaming down his cheeks every time.  He loves going to church on Sunday and enjoys having the bible being read to him.  The word of God still speaks with an undying force to his heart and soul.

football game

A love of Music is another thing that still remains.  As most of you know Curt was an awesome and talented drummer, he really can no longer play drums.  However, his passion for music pops up everywhere!  It is the funniest thing, we can be at a store shopping and there will be music playing in the background and he will start humming along and asking me if I know what song it is?  I think to myself every time….. do I know what song it is?????  What song are you even talking about Curt I can barely even hear it!  But he hears it every time and is banging out the beat on his legs and humming along.  He is so tuned into music. He can be watching a football game and gasp, sometimes is enjoying the music in the background more than the game!  We were watching an old Journey DVD the other night and he was banging out the beat on his legs NON STOP!!  Yes music is still alive and well his Curt’s mind!

C at Liberty game

An enduring sense of humor!  Every morning when I get him up and ready before I leave for school, I say, “time to get up…rise and shine!”   He the proceeds to give me this devilish laugh and says “NO!” and then laughs again.  He loves to watch old movies, just the other day he was laughing to the depths of what seemed to be his inner soul during “Ferris Bueller’s Day Off.”  He would go around the house for days afterwards, going, “Bueller, Bueller, Bueller…anybody”  When humor is inserted into a sermon at church, he picks up on it right away and often leans over to me and says, “that’s hilarious!”  He loves to have a good laugh.  This current ad from K-mart had him practically rolling on the floor recently!  If you knew Curt, you would  know he always had a playful and fun sense of humor, it’s nice to see a part of that still remains.

Liberty family pic

A passion for Jesus, and a passion for music were two things Curt always felt so strong about…..As this horrid disease continues to steal so much of Curt, it’s endearing to see that it can’t steal his love for the Lord and his passion for music!

So on this Thanksgiving weekend, we are thankful for the glimpses we continue to see of the old Curt.  Yes some things are lasting, despite a horrible disease that can take so much…..3 things remain!  And today we celebrate those things!

*Update, I had written this post a few days ago, but didn’t get it finished until today.  In the mean time….Madi passed her driver’s test yesterday!!  Woooohooo….celebrating that milestone with her.  Yes this mom can still teach her teens to parallel park! :)

M license

And so it begins…..

Every year at this time I get a bit sentimental………This makes my third year of starting back to school with out Curt.  Last week I brought Curt along with me while I was going to work in my classroom.  As I was finishing up I asked Curt if he wanted to walk down and see his old classroom.  He said, “not really, I don’t know where it is.”  I suggested we just walk down his old hallway, just for the heck of it.  He complied and as we walked together, he turned to me with this little glimmer of familiarity and said, “this is my place” and then as we continued down the hallway he walked right up to the door of his old classroom.   HIS old classroom, the place where he spent 15 years teaching HS students. 

c-at-school-1

Curt loved his job!  He would always be so excited as the lazy days of summer began to wane and the leaves in our woods began to fall, knowing the first day of school would soon be here!  I on the other hand would shudder and complain about going back, he would smile and remind me, that we should be thankful for the jobs God has given us! :)  I still complained……….

He would get up early that first week of school and be there by 6 am each day.  He wanted to have time to get work done when there were no students around.  He would say, “after school time is not time to get work done, that is time to help students.”  He would often come home late from school after hanging out after school talking to students, helping with assignments, or just giving advice.  I would often have to call him at school and say, “DINNER IS READY can you please come home!!”  I would get so mad…….now I would give anything for him to arrive home late for dinner.

c-the-cheerleader

Curt being a cheerleader and a trooper on a Father/Daughter night for the cheerleaders, this girl’s dad couldn’t be there so she asked her fav teacher to fill in.

He cared for his students, he worked hard to get them involved in each class, he engaged students with his witty sense of humor, and taught with a passion. 

He was diagnosed with Younger Onset Alzheimer’s Oct. 1st 2010, I remember I was making a quick stop at a local store for some much needed school clothes the next day.  The clerk who checked me out noticed my last name and asked if my husband taught at our local high school.  When I said I was his wife, she gushed on and on about how he was her favorite teacher, and even though she didn’t like World History she loved his class!

  I didn’t have the heart to tell her about his diagnosis and thanked her and went in the car and cried!

Yes this time of year I reflect so much upon Curt’s teaching days.  Just the other day we were out at a local restaurant and when the waitress brought our check, she smiled at us and said, “A former student paid for your check tonight!”  That was not the first time that has happened, it happened another time at a local Applebee’s restaurant. 

1998 Yearbook pic

1998 Yearbook Picture of this nice married couple that taught at the same high school :)

One man’s life does matter, and it does impact others.  I know, it sounds like a scene from It’s a Wonderful Life. :)

Curt was always a fan of Oswald Chambers, I found this quote in one of Curt’s books recently

“We are not made for the mountains, for sunrises, or for the other beautiful attractions in life – those are simply intended to be moments of inspiration. We are made for the valley and the ordinary things of life and that is where we have to prove our stamina and strength.” ~Oswald Chambers

Yes Curt lived in the ordinary things of everyday life and in those ordinary, daily moments he worked hard to live a life that would always honor God, and reflect a life lived with passion and integrity. 

I am thankful for the model he served to me to live that life. 

It is with that inspiration that I start my school year this year! 

Alzheimer’s and life with Teens

I  said to Curt while getting out of the car in the 90 degree heat at a lacrosse tourney, “Well honey you win the award for being the most active guy with Alzheimer’s!”  He got up 2 days in a row at 6am, I got him dressed and we headed out the door for an early 8am game in the heat.  He hung out in the heat watching two games on Sat., used the nasty outhouses, (which provided a nice challenge for me since he needs a bit of help these days…… and then I was so paranoid he would somehow lock himself in the outhouse, oh can you imagine the horror of being locked in one of those!.) And he reeled in the commotion of the two games close together.  He would get so confused as to what was going on, but would continue to go along with whatever I told him.  Sunday,  Madi had an 8am game and then not again until 3pm.  We had time to kill between games, including a long chilling out time at IHOP!  And then some shopping, which we know how much Curt loves! And then a short 1/2 hour nap in the hot van for him and then back to the last game. More time in the heat and then the 5 hour drive home.

Madi lax

Really, it’s a lot for a guy in the late moderate stages of Alzheimer’s to deal with.  But He is a trooper, he sits patiently in the heat, and really doesn’t complain.

morning walk on the beach

People often ask me how he does with these kind of things…..overall he does well.  He would keep getting confused with when Madi is playing and how long the game lasts etc.  But he would hang tough and sit out in the sun drinking lots of water and seemed pretty content.

C pool

He also LOVED our family vacation!  He wanted to be part of everything.  Really once again he was a trooper!! Got up early, stayed up late, enjoyed chatting with my extended family.  We rented a beach house with my family, it was a ton of fun.  Curt had always enjoyed the ocean.  He and the kids would be out there for hours………..now when he wanted to go out in ocean we were all nervous!

Curt in ocean

But he was pretty insistent about wanting to go in.  So Tyler was the first to get him out there, and we all quickly joined him out there.  Due to the spatial issues, he had trouble judging when the wave would break, and at one point Tyler literally picked him up to carry him out so the wave would not break on him.  So,Tyler, Madi and I, and my two surfer, boogie board riding brothers, kept a careful watch over Curt while he was in the ocean.  But as it is in the ocean, inevitably the “big wave” came, and despite our efforts, we all got toppled.  We all quickly pop out of the what feels like the wash cycle of the washing machine, all looking for Curt.  For that brief second no one sees him, and then suddenly his head pops up and he loudly proclaims, “That was AWESOME!!” And that expression seemed to capture our entire vacation for Curt.  He really enjoyed the long conversation with family, the pool, the beach and just some time away.

curt beach

hanging on the front porch

But the lazy days of summer are beginning to wane as we take Tyler to college to start his freshman year TOMORROW!  And I have some back to school commitments coming up as well as looking for people to stay with Curt in the fall.  Honestly I am not looking forward to the busy, crazy, stressful life again.  I  find myself getting a little battle weary…..maybe I am just getting older, maybe it’s that fun woman hormone craziness, maybe it’s Tyler leaving……….it’s probably all of it combined.

Assateague

But I have also come to understand Matthew 11:28 28 “Come to me, all you who are weary and burdened, and I will give you rest.

Jesus gives the invitation to Come, but it is us who must get up and GO!!  We must Go the Lord, and give him these burdens.  Trying to carry them on our own just doesn’t seem to work real well! :)  So I am working more on Going to the Lord with the burdens of the day, I often try to carry them on my own. Working on that more for this Fall….Going to the Lord and LEAVING those burdens of the day there.

Going………….

Thanks again for your ongoing LOVE and prayers for our family!!

Morris fam

Looks Like We Made It!!!!

Yipee!!!  Yahoo!!

I am celebrating the end of a crazy, hectic, yet heartwarming school year! 

What a crazy June it for this mom.  Tyler graduated, he left for a week at the beach, we threw a big family party for Tyler and for Madi’s big 16th birthday.  We also went to a lacrosse tournament and some how I limped my way through the last few days of school.

I am just saying….. lots of vitamin supplements and coffee seem to be my mainstay to keep me going these days!

But I made it!!!  Made it through the school year!!!  This post is about celebrating making it through it all!

It’s a crazy journey, and sometimes when I have down time, I almost don’t know what to do with it.  I am so used to going, doing, working, helping etc.

There were many EMM’s (Emotional Mom Moments) along the way. The kind we all go through when our kids suddenly grow into young adults and you try to savor those last moments of their senior year.  This is Tyler’s senior night at his baseball game….a true EMM.

baseball senior night

Another one of this EMM’s was when Tyler won our school’s Grosh Award/Scholarship.  It is the highest athletic honor/award the school gives and Tyler was the recipient this year.  You can read more about it here.  It was a great honor for him, and we could all savor that moment together at an athletic dessert social in early June.

grosh award

Madi turned sweet 16 and had a big party at a friend’s pond.  It was a fun pond party with food to plan, cake pops to make, prayers for good weather and a ton of other stressors along the way.  Really what was I thinking planning this party 5 days before graduation!!!  But it all went well, the sun came out 5 min. before the party started and it made for a beautiful late afternoon  pond party.

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And Madi ended up making these cool cake pops all by herself, boy were they delicious!

Madi 16th party

And then there was this moment…………

graduation 1

grad 4

And a special hug from one of my students who Tyler walked with at graduation.

grad 5 hug from cm

And all that happened the first 3 weeks of June!

But as I said I made it!

And most important Curt made it though it all.

He just went along with what ever I told him was happening.  With so much going on he really depended on me to keep things consistent for him.  I was really thankful Margo the dear lady who stayed with him during the time I was at school was able to come consistently during those last 2 weeks.  She was a source of stability for Curt amidst the chaos.

Curt was able to understand the fact that Tyler won several scholarships and other awards and that he graduated, but it was like someone who gets it, but is very apathetic and unemotional about it.  He kept saying it was awesome, but I don’t think he totally reeled in the emotions of it all.

He has been same the last 2 months or so, the anger issues pop in now and then and are not pretty, but don’t last as long as they did a year ago.  Thank goodness!  He is eating a lot more and hopefully gaining back some of that weight he lost.  He struggles with HOW to get the food to his mouth, but is quite happy to eat his favorites. Although his repertoire of the food he likes is very limited, but that is ok, just so he eats.  He has lost lots of that muscle mass, he used to be one solid dude, now he is mushy. :(  Two minor things I have noticed get worse are his inability to get himself a glass of water, he confuses how to work the faucet.  He also can no longer take off his shoes with out help.  It’s the slow demise of those daily tasks that are so sad to watch slip away. He can no longer shave or take care of those daily personal hygiene skills that we all take for granted.  He walks slower than molasses pouring from a jar, and shuffles and kind of bends over some as he walks.  He almost looks robotic in his gait.  But he still retains a fun sense of humor and tells me all the time that he  loves me so much!  So we press on and cherish those glimpses of the old Curt!

Also, I must once again thank SO MANY of you that helped to get me through the spring, there have been SO MANY of you that helped out in big and small ways.  Friends who cleaned out my disgusting fridge, brought meals, prayed for us continually, gave gift cards, let me borrow a lawn mower when ours needed repair etc.  Spring was just overwhelming and so busy, really, I know I am repeating myself, but I just couldn’t keep up with everything at times, and became a bit forgetful and I am sure I did not thank many of you.

And a special Thanks to person who made us dinner the week of Graduation!  It was a really delicious spaghetti casserole!! The timing was PERFECT, but Curt had no idea who dropped off the meal.  I believe it was the night of baccalaureate, and the way that night was going we would have never had dinner. :) So thank you to the mystery person who has blonde hair.  That is all I could get out of Curt. 

Tyler leaves for 3 weeks of summer classes at Liberty this week……Ahhhhhhhhhh, minor freak out, but I got this.  We appreciate your prayers as we all adjust to him being gone.  Also Madi has several lacrosse tournaments with traveling to Va. and Maryland, do pray for the logistics of that.  And pray that we can all just savor some family time.

Thanks!

A few pics from our big family graduation/birthday party

grad party fun

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Curt with his brother!

curt and nate

The Rock? Sometimes it seems way out there somewhere.  It’s bumpy and hard, right at the water’s edge.  It even hurts when we fall on it.

The Rock! But it sure makes a great foundation when the storms hit!

A Caregiver?

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

C and I Ice chair

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

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At a basketball game

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

Yes, I have become a caregiver.

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

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

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

Family News

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

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

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

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

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

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

Madi sign

Madi made this special sign for her BFF.

I learned a few things in 2012

Well 2012 hasn’t been real pretty.  We have been beaten down, frustrated, stressed out, exhausted, overwhelmed and weary.  We had to deal with a busy spring sports schedule and then the angry outbursts of Alzheimer’s.  (You can read more about that here).  We traveled a ton this past summer for Tyler’s baseball team, I did a lot of driving and really missed Curt’s great driving skills and endurance!  Curt continued his downward spiral into the black hole of Alzheimer’s and has lost much of what we love about him.  But the man still retains a strong sense of humor which we are thankful for.

But along with such gloom and doom I learned a few things in 2012!

Christmas Eve 2012

I have seen the incredible goodness, care and love people have shown our family.  I have learned that friends and family can make a huge difference in the lives of people they care for simply by lending a listening ear, bringing dinner, helping with the practical things of life (yard work and laundry), sharing a hug at just the right time and sending text or note of encouragement.  I can’t tell you how many times dear friends and family have pulled me out of the miry pit by lending that hand of encouragement and practical help!

C and I  Christmas

I have learned to worry less!!!  There has been SO  many things I have worried about in this whole journey….who will I find to care for Curt while I am at school, how will I figure out all this financial stuff, how are we going to pay for long term care, etc. etc. etc……..So many of my worries have all come to work out in ways I could not even imagine or have planned for.  God provides!

I have learned that my plans are not always God’s plans.  This one is a tough one for me, as I am such a planner.  Curt and I had plans to retire early, pay off our house, travel…..but God has other plans for us and I am slowly learning to trust in His plans and not mine.

I have learned that the Keurig Coffee brewer is one of the best inventions ever.

Curt and Mom

I have learned that when you are down and out, cry, have a pity party, go all out!   But when the cry is over, pick yourself up and move on, don’t stay in that place, it just isn’t worth it.   It will do no good to stay there and dwell about the misery of your current situation.  Move on, laugh a little, Pray a LOT, make fun of your self a little, lighten up and MOVE ON!

I have learned that a sense of humor can go a long way.  Oh and let me assure you our family has always had a sense of humor.  If you know us, you know this to be quite true.  Laughter truly is good medicine.  :)

Cousins and Isaac

 I have learned to have fun with  family!  Even if things are looking grim, do something fun.  I have found that doing something fun and silly just helps to eliminate the doom and gloom stress of living with a fatal disease!

Paisely Christmas

And last but certainly not least, I have learned that no matter what is going on in our lives,  I still hate doing laundry! :)

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I stuck in a few fun pics from Christmas into this post.  Don’t you love this great picture of Tyler and Isaac!  Isaac is our Fresh Air Fund young man that has come to stay at our house the last 10 summers!  This year he got to come and stay with us for Christmas!!  It was so much fun to have Isaac here for Christmas!

So 2013, Welcome! 

I have NO IDEA what this year will bring, but I know I will continue to trust in Jesus, enjoy my dark chocolate and rely on the things I learned in 2012!

I am Thankful!

Tis the season to reflect upon our many blessings! My mind is coffee deprived and slowly starting to awake on this chilly morning, but it’s always a good habit to get in each morning and Thank God for His blessings…….. big, small, frivolous, silly, life changing, or encouraging.

Thank Him!

I am thankful for:
Friends who have been such a HUGE blessing to our family in many ways.  It’s the little things that so many of you don’t see.  Friends bringing meals, sending an email or card our way, an occasional gift card to eat out, running to the store for me, helping to get my van headlight fixed……and the list goes on.  So thankful for so many of you! :)

Paisely our dog!!  She is a riot and brings lots of needed fun to our house!

My parents, they are about to celebrate 50 years of marriage!!!  That is a milestone to be thankful for!

Um….yea, just had to stick this in my list somewhere…….I have been quite addicted to Burger King’s Sweet Potato fries lately.  Love ‘em!   It started this summer with all our baseball travels, I tried them and have been hooked ever since!

Tyler signing his National Letter of Intent to play baseball at Division 1 Liberty University next Fall! Such a joyous milestone!

Seeing Tyler and Madi during the school day!  I am so thankful that I can teach at their school.  Here is Tyler going through the lunch line with one of my students.  I love being there for this kind of thing and I am thankful for that!

Moments……yes Moments.  The days may be long, but there are those special moments God sends our way each day to cherish and be reminded to be thankful! Thank you God for memorable moments through out my day.

My Keurig!

Curt’s sense of humor…..He has lost so much, but still retains that smirk and fun sense of humor.

My kids, they make me laugh!!!!

Our new TV ( and thanks to our friend who helped to mount it for us!!!).  It gives Curt something to do during those down times. He still enjoys watching Sports Center and anything sports related.  He loves reclining in this cozy chair with the dog and watching TV.

Exercise!  I love getting to our local rec when I can or out for a power walk.  It clears my mind, gives me time to pray and gives that extra energy boost I need!

My iPhone, I would be lost with out it

~Thankfulness takes the sting out of adversity.~

…..ALWAYS giving thanks to God the Father for everything…….

Ephesians 5:20

I see no mention of, if your circumstances suck (always been a “say it like it is” kind of person) stop giving thanks.  No the word is ALWAYS.  And despite not always feeling like giving Thanks, and not always feeling real Thankful. 

I give Thanks, for I am blessed in SO many ways.

Happy Thanksgiving Everyone may you enjoy the many blessings from big to small that God brings our way each day.

Determined

See those hands??

They are mine.

So……….. if those are my hands, it must mean……

I am UNDER the dock!

You know there must be a good story with this one!

When we were at the beach we all enjoyed kayaking in the inlet behind the house.  Since it’s an inlet, there would be a high and low tide at our dock.  Obviously, during high tide it was much easier to get into the kayak than at low tide.  At low tide there was about a 4-5 foot distance between the dock and the kayak.  At high tide it was only about a foot, so it was easy to just scoot over into the kayak.

Well…….. I was, Miss. Determined to kayak in the morning during low tide.   I attempted to get into the kayak one beautiful, still, and quiet morning.  As I was entering the kayak, I put too much pressure with my right foot on the side of the kayak as I was getting in. This spilled me and the kayak into the salty, inlet waters.

The kayak started floating under the dock and since these were  not our kayaks, I was paranoid of watching it float out into the river so I grabbed it with my feet and held onto it.  Which presented a dilemma.  How do I get out of the water with out letting the kayak go.  Curt was there, but was unsure as to what to do.  I told him to go get Tyler. :)

I hear Tyler come walking down the path to the dock, he yells out,

“Mom, I am coming to the rescue…….Mom…..Mom?????  Where are you?”

I reply, oh so casually, “under the dock”

“What!!!”  And shortly after that I see Tyler peering under the dock to find me under it, and in the water.  We both laughed hysterically for a few moments, then he grabbed the kayak and pulled it out of the water and then almost effortlessly pulled me out of the water! 

( Nice to see the strength trainer I have been paying for him to go to is working!).

I was determined to try the kayak again right away, but I knew I had to dry off and head out to the beach for the day.  But shortly after we arrived home again from the beach, I was back at it, determined to get back into that kayak!

Determined, that has always been me, I embrace a challenge and I am determined to turn it into something good.  Ah, but this Alzheimer’s has been a tough one!  As things worsen, it gets harder.  But I do find myself even more determined to press on, to keep living life.  It can be tempting to just keep Curt home when we head out, with our busy lives sometimes it’s easier.  But I am determined to get him out, keep him going to things as long as he can, even if there are a few of those awkward moments that Alzheimer’s sometimes brings out. 

Curt’s filter for saying things you shouldn’t appears to be “broken” and that lends it self to an occasional awkward moment!  Like the time he  said to a friend, ever so sweetly, “I am so glad you are trying to loose weight (long pause)………..you need to and it will help.” :)
 He moves slow, on occasion walks in the wrong restroom door, comes out with his zipper still down…but it’s all good, it’s Alzheimer’s not Curt!  We are determined to keep living life, even if it not the life we planned on, it’s the life we know at this time.  So we will make the best of it!! :)

Our glorious vacation was a part of that, we stayed active, Curt went out in the ocean a lot and really enjoyed it.  He couldn’t ride in the waves like he used to and occasionally got toppled by a wave, but he was also determined! :)  He also enjoyed parasailing immensely. So we press on, we are heading off to school in a few days. 

Once again with out Curt.

Tyler will be a SENIOR, and Madi a sophomore, oh where has the time gone. But we press on……..and embrace this life God has given us to the best of our ability.

We are determined…….

~Continually restate to yourself what the purpose of your life is.  The destined end of man is not happiness, nor health, but holiness~

Oswald Chambers

Prayers are appreciated as we start school next week. It will be a big adjustment for me, but also for Curt.  He will have someone with him during the day, and will have to get used to new routine.

Thank you friends!

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. :)