Life goes on……

“The thing Margo told me about, is that here now?”

“What thing?”

“The thing, you like it”

“Oh you mean the weekend?”

“Yes when does that start? We never had weekends when I grew up in Ohio so this is new”

“Yes it starts TODAY!!!”  :)

So went the conversation between Curt and I this afternoon.

It reminded me of the good and bad of life these days.  The good being the weekend, the bad the reminder of Curt’s progression with Alzheimer’s.

I feel like this school year has been a roller coaster ride filled with ups and downs, good and bad.  The bad is the daily reminder of the progression of Alzheimer’s in Curt.  He is having trouble finding certain rooms in the house now.  He will say he is ready for bed and be so tired, but then ask, “where should I go?”  He gets confused on where the bathroom is frequently.  The anger of last spring is starting to rear it’s ugly head a bit also.  In the last month or so, he would suddenly become so angry at me for random things.  He was getting mad when I told him to take his shoes off so we could get his pajamas on for bed, he saw no reason to take his shoes off and thought I was being pushy telling him to take off his shoes first. 

And the spatial concepts of life are totally gone, he is even having trouble being able to place himself in a chair with out assistance. Just today while out at a yard sale, Curt was saying he was losing his water. (He had been walking around yard sales with a water bottle).  I looked over and he had been holding his water bottle at this angle not upright. He had NO idea that this was not the best way to hold a water bottle.   It happens frequently….. darn spatial concepts!

  Alzheimer’s is so much more then losing memories I am painfully finding out!

But there is some good in amidst the misery.

Tyler has been writing these beats on the computer with garage band, he and Curt are enjoying sharing some music time together just like they did in days gone by.

Madi turned 16….finally!! She got her driver’s permit and we enjoyed a nice morning together while a friend stayed with Curt on her birthday.

Tyler had a great baseball season….he won All League honors and ended the season with a .520 batting average, hitting 8 doubles, 5 triples and 3 home runs.  It made for a fun season watching him play his senior year of high school baseball! It was such a joy especially after his broken ankle frustrations of basketball season.

I survived the spring sports season, there were moments when I questioned my sanity and ability to persevere.  But I made it!! :)

Tyler and his sweet girlfriend enjoyed a nice night at Prom, and they looked so nice.  Just another moment for this sentimental mom to cherish of a special time for my soon to be grad.

I started this post sometime in mid may and got caught up in the whirlwind of life and never finished it until today June 1st!  Tyler’s baseball team made it into the post season so that kept  baseball season going until late May, there were awards ceremonies, baseball banquets, laundry, (ok, the laundry never really gets done anymore, we just wash what we need for the week ahead,  we all wear non matching socks these days.  And we totally rock the look!), lacrosse practices for a team Madi is playing for this summer, a special 4 day visit from Curt’s parents.  May just got so busy……and then there are those emotional mom moments when I ponder the fact that Tyler’ is graduating!!

Curt REALLY enjoyed his visit with his parents, they live deep in the depths of southern Texas and don’t get this way too often so it was indeed a wonderful time!

So alas I am finishing this post……I survived SPRING!!!  Actually I am pretty happy to have gotten through all that craziness still intact, sure a few tears were shed in the process, but I pressed on! :)  And I must give a big shout out to all the friends who continually walk this journey with us.  Truly I would be lost with out all the help!  Forgive me for not always thanking you personally or not at all, I feel certain that I forget to thank people at times….really I want to, intend to, but it all gets lost in that constant brain fog!  But you are cherished and appreciated…….and really needed!

Friends just finished up Tyler’s senior collage for me…..just another example of the help we have gotten.  And let me assure you, not in a million years could this craft/scrapbooking disabled mom ever have made anything look this good.  Thanks to my sweet crafty and talented friends Cindi and Sherry!

Tyler graduates in 12 days, a big milestone.  I am thankful for each of the milestones Curt can enjoy with us.  And thankful that summer vacation starts for this weary mom on June 14th!

Thanks for your prayers friends!

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!

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!

It’s been a year

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

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

But with in the week we were doing normal things again….we had to.  Curt was being a “cheerleader” for a student on Daddy/Daughter night since her dad couldn’t be there.  Tyler was finishing baseball season and gearing up for basketball season and Madi had a big cross country meet. We are a busy family with two busy teens.  We are just now a busy family with Alzheimer’s thrown into the mix.

Life goes on.

And just as it is with this post.  I actually started writing it 2 weeks ago.  But life got really hectic and busy.  Included in that was a long 8-10 hour drive to North Carolina for a weekend baseball tournament where I looked at too much of this;

Life goes on

I reflect and remember.

For weeks after Curt was diagnosed I constantly pondered and thought back over the last several years.

Yes, there were lots of signs, foreshadowing of what was to come.  In hindsight there were so many indications of a storm brewing in Curt’s brain.  The time he couldn’t put a simple swing together 3 years ago, or the trouble he had putting our tent up when we went camping in 2009, the sudden loss of interest in his hiking passion,  the late payment charges on bills, his apathy.  It all  made sense now.

But…Life goes on

But Life goes on with such a different perspective now.

The little acts of kindness to our family mean so much and are never overlooked.  Some random sweetheart of a person sticks a delicious box Wilbur Buds in my school mailbox every once in awhile.  Such a little thing, but a big thing to me!

Family and their supports means the world to us!

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

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

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

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

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

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

FAQ Interview

Ok warning on this blog post……I really don’t know what got into me when I wrote this! :)

Today I am sitting down to chat with Sandy on how life is going for her these days

Jesus and Dark Chocolate Blog – So Sandy, how are YOU doing with all that is going on ?

Sandy – (smiling and sipping her coffee) Thanks for asking.  Life has been just weird for me.  I miss the days of normal chaos.  They have now been substituted with unexpected, unknown days of chaos and unexplained tiredness.  Days don’t go as planned, and that is hard for me since I am a planner.  Things come up and I am learning to quickly switch gears and adjust.  It’s all a new normal for me….but I am making the adjustment, seeking God’s wisdom, and living life!  No need to get bitter and angry…that would lead me no where!  Hey can I get you some coffee or dark chocolate ?

Jesus and Dark Chocolate Blog (JADCB) – No thanks on the coffee, but I will take some chocolate!  Thanks!  How is Curt doing these days?

Sandy – (pouring more half and half into her coffee, and sipping it) Well, overall he is really doing well. He is NOT bored at home.  He has the greatest friends.  He routinely has one or two different friends (and even former students) who stop in to say hi, take him out to lunch or breakfast, or just hang out and watch sports with him!   He is also busy practicing drums for Sunday mornings where he still plays twice a month on the worship team. He is also working on recording drums.  I am telling you that man may loose all of his other abilities down the road, but he will still be able to play drums! :)  He does get VERY tired at times, so he will also sleep some during the day.  That helps since the evening and nights are often busy with sports and the kids activities.  He is also trying to get to the Rec Center once to twice a week to work out.

(JADCB) Hey this is good chocolate by the way, what is it?

Sandy – Wilbur Chocolate…duh!!

(JADCB) –  So what can friends do to help Curt out?

Sandy – Good question.  It seems that he enjoys just hanging out with friends the most.  His humor and social skills are still quite intact, so hanging with friends is a real blessing for him.

(JADCB) – What does he struggle with?

Sandy – (At this point Sandy puts down her coffee, and in a slow and deliberate voice she tells me)  He can still do so much, and I try so hard to enjoy those things and focus on them!

But  if you must know………. he continues to struggle those short term memory things like, “where is the game tonight?” “what’s for dinner?” He may ask things like that 2-3 times with in an hour.  Or he needs frequent  reminders as to what he needs to do.  I put up a big white board in the kitchen and write down things he needs to do each day on that.  That really seems to help.  And those elusive spatial concepts seem to get the best of him.  Things like buckling a seat belt, filling out a form, hanging up a coat properly, and so many other routine spatial concepts that daily elude and frustrate him.

At this point, Sandy asks if we can continue the interview another time….she is heading off to the Rec Center for a workout.  So it looks like we will continue with FAQ Part 2. So check back later in the week for Part 2. :)

Been a bit stressed

I was thinking about writing a serious blog post about our family and things we are going through lately……but as I sat to write I realized my brain must be in Attention Deficit Disorder mode and I kept getting so sidetracked by these random thoughts of the day…………………….

Why is menopause called MEN-o-pause?  Why are men involved in it??

The moldy things growing in my containers in the back of the fridge, should I actually wash those disgusting, moldy containers out or just throw them out?!?!

How do other moms get socks to match on a regular basis?

Do I have to cook dinner tonight?

My fleece lined sweat pants are the most cozy comfortable pants in the world to come home to after a long day!

Geez…….How long has it been November!!!????!!!!

I love making baked potatoes……E.A.S.Y

I have a headache and I keep thinking of these yummy raspberry frosted brownies I had the other day.  Not sure what the connection is there……..

So there you have it….nothing insightful, nothing spiritual….just my mushy brain after a day at school! :)

And I am ok with that!  Some days are just like that, and THAT IS OK!  I am learning to live with a new normal, and I am learning that God has his hand in all of it, even if it’s days like today!

Hubs is planning to stop teaching and go on medical leave sometime after Thanksgiving, I am hoping sometime next week, that I can finally blog about all that is going on!

Dear Blog

Dear Blog,

I just don’t know what to do with you as of late.

I rarely post, and when I do I feel that I always post about being so busy, nothing to insightful!  I started my blog over 3 years ago, I posted 2-3x per week, had regular readers, loved reading other great ladies blogs, and was so immersed in my blogging hobby!  But as of late I just have not had time to post!  Blogging has gone the way of my love for baking, my steadfast interest in feeding my family healthy home-cooked meals ( the other night we had frozen fried chicken from a box and mashed potatoes from a frozen plastic container!) and my love for reading.

I just don’t have time to do the things I enjoy on a regular basis.

So the question is do I give up my blog?

I do bake on occasions, and I do fix a healthy meal for the family on occasion…..so I am thinking I must cling to my blog, even if it’s an occasional post.  It is after all one of the few interests I do still have. :)

When I started this blog my kids were in elementary school and I worked part-time, now I have teens and work full time.  It’s a different season of life.  And although I LOVE it in so many ways, I am a tired mom.  There are those moments when I think giving birth at 19 seems appealing.  Ha ha!

So dear blog, I guess we will stick together a bit longer as we journey through this life God has given to us.

And to my dear readers thanks for sticking with me, I do appreciate ALL of you!!!

So as I encountered some unexpected free time this morning, I think I will drink a little coffee, and do some baking.   Blogging and baking, it  helps keep this mom sane!

Yes, I must keep my blog, it does provide a respite from life and helps me to keep a refreshed resiliency to keep pressing on!

~Sandy