Category Archives: Family

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

 

 

 

 

 

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!”

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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! 

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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!” 

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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!

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Merry Christmas friends!

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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. 

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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.

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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!

Oct. 1st

The day passed in our house pretty much unnoticed.  There was no mention of it, I actually didn’t realize it until a few days later.

Then it occurred to me, It’s been 2 years since those dreaded words were spoken to Curt and I in a Dr’s office on Oct 1st, 2010….. “Curt has dementia, most likely Younger Onset Alzheimer’s, this is very rare at his age (46).”

2 years!
2 long……..busy frustrating, overwhelming years.

2 years of little hope, as we continue to watch the speeding train of Alzheimer’s wreak chaos and havoc in Curt’s brain.  I was thinking tonight as I was helping Curt get dressed for bed, how quickly this disease has progressed.  Curt gets so discouraged at times, some days he is very aware if his regression, other days he is oblivious to it all.  During a recent visit to his neurologist, the Dr. asked a series of questions as part of a test known as the MMSE (Mini Mental State Exam).

What year is it?  “2010”

What month is it (it was Sept.) “July”

What season is it?  “Spring” (It was fall)

Yes, he is slipping more and more into that black hole. He really was unaware that his responses were incorrect.

Regardless, the kids and I see it all.  Tyler and Madi are such typical teens in so many ways, but tucked deep in the depths of that fun loving teen life they too struggle with daily watching Curt struggle.

Not sure if this is a pic of a “normal” teen but this is Tyler doing a normal teen thing leading the student section during a football game.  And Madi sporting her new Liberty Univ. gear on a recent visit to Liberty.  Such normal things……….

Yet I see they are also concerned, Tyler recently wrote a rap song and penned these words as he sees Curt continue to fall into the black hole of Alzheimer’s.

“I promise I’ll be by your side when the going gets rough

Whatever I do will never be enough

You were always by my side when life was getting tough

Now as your starting to fade away, I get to see you worsen every single day

I am tongue tied and speechless and I don’t know what to say.”

Yes I think that sums it up for all of us, we are speechless and don’t know what to say…….or do at times.  This is such uncharted waters, living with Alzheimer’s at our age and this stage of life is not normal.

However, we also get to see a glimpse of such acts of goodness and kindness by such supportive friends.  Amid the bad, there is good!

I wish I could convey to you just even a glimpse of the help we have received, and how it speaks volumes to all of us.  I don’t think Curt realizes the magnitude of the help that has come our way, but the kids and I see it.

Friends will email or text me asking out of the blue to bring a meal……..and it’s always such a perfect time!

A dear friend from high school has been sending us gift cards for local restaurants, so helpful!

A group from a local church came one Sunday and did an TON of yard work and household chores for us.

A neighbor sends over soup, another neighbor drops off on of our favorite fall pumpkin cookies (and I had been feeling guilty for not baking them yet this fall, when I “always make them”)

Friends donate to the Alzheimer’s association on our behalf ( I am the WORST fundraiser, the fact that we raised close to $1,000, that was all our friends and teachers at school supporting us, not me doing a lot.  Really you would not want me on your fundraising committee :) )

Please know you are appreciated, I feel as if I forget to thank some of you at times.  I have so much to take care of I am finding that some of those details get lost in my brain and are so quickly replaced by more immediate and urgent needs.  So please know if you were not thanked, it is not the result of not being appreciated it the result of my current ailment…..FBS!!!!!  (Full Brain Syndrome, I have a very serious case of it!!!)

Thank you for your ongoing prayers, the uncharted waters are tending to get much rougher to manage lately, so prayers for wisdom, guidance, and extra energy and patience for me would be helpful.  (Has someone invented a patience pill yet, I will be happy to trial that in a clinical trial…just sayin!)

I must leave you with a pic or two of our newest addition to the household!  Meet Paisely!  WE all love her and Curt is really bonding with her, he seems to really enjoy hanging out with her.

Told ya she is a cutie. :)

Life is hard for us, but God is still God, and He is good, we press on!

Waiting, Trusting and Hoping……

Thank you!

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. :)

Life as we know it

I thought I would show you some pics that will give you a glimpse of life as we know it these days!

Tyler had a great set of games in Richmond, Va.  It was well over 100 degrees, but we learned how to survive in the heat!  I of course was wondering how am I ever going to get that uniform white again!?!?! (Note, after washing it 3 times with Oxi Clean it is still dirty!)

This cool, blue towel called the Frogg Togg is one great way to stay cool.  It’s a cooling towel, if you rinse it in warm water, the water evaporates and keeps the towel stays cool.  We also quickly realized sticking the Frogg Togg in a cooler of ice really helps also!  I bought one for myself and am making quite a fashion statement wearing it around my neck! :)

Poor Madi got sick on the Richmond trip.  Here she is shivering (just as she was getting a fever) at the Red Robin.  She is holding Tyler’s cheese sticks in her hand to try to warm up!  That was also the night the AC broke in our hotel room and Ty and I got little sleep, and poor Madi was cold and then burning up.

Ok, so not only was it hot as balls (ooops sorry, I have been hearing the 17 year old boys say that so much it’s starting to effect my brain also) in Va, but the field right behind us had just been sprayed with manure to help rejuvenate the grass over the summer.  It smelled horrible.  On a positive note, for those of you who live in Lancaster Co with me, you know it made me feel like I was at home.  Nothing like the smell of fresh manure to make you yearn for home!

So thankful for the team shade canopy!

The reason we do all of this crazy traveling!

Not sure how I feel about this picture.  Madi really seems to be enjoying being the only girl traveling with the team this summer.  The boys have been more than kind to invite her along with them at night when they go out. Mmmmmmm?? :)

Love this sweet picture!

This is what happens to me, after the heat, the driving, the long double headers, the packing of the car, the unpacking, taking care of all the details……I at some point just conk out!

After driving 9 hours to Myrtle Beach, we checked into the hotel and headed right to the beach.  It was beautiful!

Sweet Curt!  He works so hard to keep up with everyone on these trips. I write the room number of our hotel on his hand in sharpie so he can find his way back to our room.  He is struggling so much to keep up,and keep abreast as to what is going on and where we are going.  But he is enjoying this and I know he is glad he can take in Tyler’s games.  The other parents on the team have also been very helpful!

So thanks for the prayers, we are off to University of North Carolina tomorrow and then onto Atlanta.  We covet your prayers, it is what sustains us!

1 Peter 1:6-7

In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire —may result in praise, glory and honor when Jesus Christ is revealed.

~Sandy