“The thing Margo told me about, is that here now?”
“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!
I remember about 8 years ago or so, our church was having all it’s members take part in this “spiritual gifts survey.” As part of the program we were to meet with one of the pastors to discuss our “results.” I specifically recall the pastor asking me, “so you have had no major traumatic life changing events?” I replied, “not really, my grandpa died in 8th grade and my other grand mother died that year, that was rough….but it was 8th grade.” I remember telling him how my life has been good, so blessed in many ways and not any big traumas or drama!
Well lately I am feeling the trauma and drama of life. It seems to have all hit with a vengeance lately! I feel as if I have become a drama trauma momma! Really we used to be a real low maintenance family!
All our trauma drama seems to to start with the letter A.
Alzheimer‘s – It’s been 2 and half years since a Dr. first told us Curt has Alzheimer’s. The disease continues to reek havoc in his brain. He is really having trouble communicating what he wants. If he wants some milk to drink, he may say something like, “it goes good…………can i have………..um…..please be patient with me I will get it.” Then he looks at me so sweetly and ask, ” can you get that for me?” So many times I don’t know what he wants, I feel so bad. Just today, as we were heading to a Lax game and I had Curt all layered up with jackets to embrace the changing weather conditions. He tells me he may have to shag some later?!?!?
Mmmm, well being a baseball mom, I figured he was talking about shagging baseballs for Tyler in the outfield (quick baseball lesson, shagging balls simply means picking up or catching baseballs in the outfield after batting practice). So I say, “you are going shag balls for Ty today?”
He replies, “what the heck are you talking about??”
When he says that it is usually a sign, that I need to do a little detective work to figure out what he really meant. Finally after some tricky detective skills that I have become accustomed to, I realize he was saying that, he may have the shed some of his jacket layers later.
So now you get the picture of how this communication thing can be tough at times!
Ankles – As most of you already know, Tyler broke 2 different ankles during basketball games of his senior hoops season. He is healing well and enjoying a good senior season of baseball!!
Appendix – Madi ended up in the emergency room two Sundays ago at 3 am. She awoke suddenly in pain in the middle of the night. After a few moments of prayer, I decided our best option was to take her to the emergency room. We arrived at 3:30am, she was diagnosed by 5:45am and in surgery by 8am. It all moved so fast…….but it did just about send me over the cliff of chaos. I was exhausted and emotionally drained from the whole thing. But, I am thankful for the friends who came to our rescue and helped with Curt and provided me a much needed crutch to limp through the whole thing!
Thanks goodness 2 and half weeks later she is back playing lacrosse and sporting a cool new scar.
Well this “A”, I really don’t want to talk about. Yep I did this to our beloved van!
It was the result of the perfect storm of everyone, including the dog, yelling for me to help them at the same time. It was just one of those chaotic moments, and I forgot a small detail (detect sarcasm), I got out of the van to get the dog, while the van was still in reverse. And with in seconds I put on my Wonder Woman suit and jumped back into the moving van and guided it out the garage. Tyler who was behind me in the driveway, gets out of his car to see the ensuing damage, and simply says, “what just happened?” I think the worst part of it was the realization I would be with out the van for 4 days and all the paperwork that ensued.
But today is Saturday and I am FINALLY finding a moment to update my blog…..today feels like a normal Saturday. We went to Madi’s Lax game this morning, I am heading out to run some errands with Curt, and Tyler went to baseball practice. A NORMAL day…… there is such comfort and peace in these kind of days. I am praying for more normal days, and special moments to cherish in these wanning moments of a fleeting life. So I have today, and today is good…..and as the saying goes, take it ONE DAY AT A TIME.
Yes we are thankful for TODAY! And I am working real hard not to worry about tomorrow!
Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
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.
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.)
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)
6 “But at the beginning of creation God ‘made them male and female. 7 ‘For this reason a man will leave his father and mother and be united to his wife, 8 and the two will become one flesh. So they are no longer two, but one flesh. 9 Therefore what God has joined together, let no one separate.”
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.
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!
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 made this special sign for her BFF.
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!
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!
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.
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.
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!
And last but certainly not least, I have learned that no matter what is going on in our lives, I still hate doing laundry!
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!
Dashing through the chaos
in a big blue mini van
Out to the activities we will go
Praying all the way
Oh…….Always on my cell, always on my cell, busy all the way.
Yes that is how I feel lately! I really was hoping for more of a Silent Night type of Christmas but for now I have the Jingle Bells chaos.
And that is what life is throwing at us right now. As I write Madi has been sick with a bad cough and fever and was just diagnosed with the flu. I have not slept well listening to her cough all night and Curt snoring all night. My big, just turned 18, young man, broke his ankle in a basketball scrimmage on the first day of December. The poor guy is SO disappointed to miss a big part of his senior basketball season!
And poor Curt really started falling apart the 2nd week of December. He threw up one afternoon and for almost 4 days would barely eat anything and was so confused. After consulting with his Dr. we took him off his two Alzheimer’s meds, since they are also known to cause stomach issues. And guess what…….he has starting eating again. He is fully addicted to Snicker’s Ice Cream bars, eating 2-3 a day! But I am thankful for that, compared to the NOTHING he was eating for about a week. And since being off of the Alz meds, we have really seen NO difference at all in his Alzheimer’s symptoms. The meds are made to stop the forgetfulness, and other Alz symptoms, but will do nothing to stop the onslaught/progression of the disease.
So December has been ROUGH, I am not going to lie. Throw in normal Christmas busyness and shopping, and activities, Tyler’s 18th birthday, Madi’s cookie party, indoor Lax games for Madi, basketball for Tyler, Dr. appointments for Tyler’s ankle and PT, our Fresh Air young man coming for Christmas, school stuff…… I was struggling……..
But as I ponder Christmas and the Christmas story I found myself thinking about Mary the other day. Mary pregnant as can be, riding on some large, uncomfortable donkey to Bethlehem. I can imagine, that was ROUGH!! Giving birth in a small, smelly stable, ROUGH. No epidural, ROUGH! Yet, as a result of those ROUGH times something really good, purposeful and life changing resulted. A tiny baby who could change the world!
And so in that moment I think to myself that our life may be a bit rough right now, but it is some how ALL part of God’s plan and purpose. And in that I find such comfort and peace this December. Even in the rough times we cling to a Hope born in a stable so long ago! And the promise of the Hope in Jesus is truly what keeps us going!
Merry Christmas one and all from our house to yours!!!
My entire family gathering for my parents 50th Anniversary!
Someone from our church got our wood stove working again……so thankful!
My sweet and lovely 15 year old!
10th annual cooking baking party!!! Always fun!
One of his senior pictures!!
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.
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.
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…….
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.
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 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……
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~
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!
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.
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
6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 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.
I know it’s been awhile since I have updated this blog of mine. April and May pretty much spun through our lives like a tornado, leaving a wasteland of chaos. I must admit April and May were 2 of the worst months of my life ever!
Really up until Curt’s diagnosis with Alzheimer’s we really had a pretty good life, sure there were bumps on the road, but not giant sinkholes!
I was out most nights with their games. We also refinanced our house which required a ton of paperwork (something I was so unfamiliar with, since Curt was always the great financial guru and I was blissfully clueless!). There were other financial matters to attend to along with our taxes, I had never done that before either. Caring for Curt and his needs has become more of an issue, as well as the needs of two busy teens! But if that wasn’t enough to send me over the edge, this is what finally did me in.
The anger issue!!
Towards the early part of May and pretty much all through the month Curt continued almost daily to rant and rage. It was horrible and so not him. Of course all of this anger was directed at me, he called me horrible names, cussed me out, and just would not let it go, it would go on and on.
Thankfully, his leg swelled up out of the blue and that gave me a good reason to take him to the doctor. Before that he refused to go. I then secretly clued the doctor in to what has been going on and asked if she could prescribe a med. She did, and things slowly and thankfully began to get better. Trust me I am SO THANKFUL for that.
Alzheimer’s is a pitiful disease, I slowly watch Curt loose so many of the abilities that made him great. Curt never really plays drums anymore, has trouble getting dressed on his own, has difficulty eating, he walks so slow since his depth perception is off, and he really can’t even throw baseball or pitch to Tyler anymore…. it’s all sad to watch. But throw the anger in and I could barely pull myself out of bed some mornings.
I started a new “workout” during April and May, wake up, pray, RUN to the Keurig machine for coffee!
BUT…….there is good news amidst all of this gloom!
THANK YOU to so many of you that have helped to support us these last several months! We have been blessed with so many meals, I really don’t think I could have made it with out those meals. We probably would have eaten cereal every night. There were nights I was so mentally exhausted just thinking about what to make for dinner was difficult! So thank you dear friends who helped out!! I wanted to thank everyone personally, but some how I feel I may have forgotten some of you, but please know how much we appreciated it!
Also, we received a few gift cards for places to eat, that too was helpful, I didn’t have to feel guilty about ordering out on those nights when I couldn’t cook!
There have been so many other little ways we have been blessed a few of my sweet blogging buddies sent me encouraging words through the mail, my sweet neighbor always seemed to have a special way of helping at the right time, a woman I barely know gave us a lawn mower we really needed to mow the woods behind our house. The timing of the lawn mower was perfect!!
I would often receive a text or a facebook message from someone with encouraging words, their timing was always perfect…..God knew!
Yes, God knew, God knows!
He knows this is hard, He knows I just want to stay in bed some days and do nothing. He knows how to meet our needs in His perfect timing!! Thank you friends for getting me through April and May, thank you for being used by God to walk this journey with us and give me strength when I have none! God knows and His timing is good!
We made it through the school year! This picture signifies the official start of summer in our house. Every year for the past 10 or so years, we head out to this huge smorgasbord near our house for a mammoth breakfast the day after school ends!
We are heading off this summer for a ton of traveling with Tyler’s baseball team, we are heading to exotic destinations like Cincinnati, Oh and Atlanta, Ga and Richmond, Va and Myrtle Beach, SC. So please pray for safety and that Curt can handle this break from his daily routine. I am just not sure how it will all go for him!
Also a big praise is we did find a local neurologist for Curt, he was very helpful and I feel like I have a go to person to help out when things get tough!
Thanks dear friends for walking this journey with us!!
I have wanted to write a post like this for some time now, but it very personal. I just wasn’t sure if this is something I wanted to put out there. But it’s Alzheimer’s, it’s this disease and it’s what I work through every morning when I wake up for school and leave Curt sound asleep at home and head off to school with out him.
Yes with out him!
That is what is so hard these days, we are married, we are a partnership, we are friends…..but as of late there are so many decisions, events, happenings…just life that I am living with out his input or involvement.
That partnership is dissolving and I am forging on ahead with out my sweet husband!
He becomes more and more oblivious to what is happening with in our household, he is more apathetic, and spends most of the day at the computer or occasionally watching the news or sports events. He seems to relish time to himself and peace and quiet.
I try to get him involved with activities, he will linger for a bit, but finds more comfort in his daily, simple routine.
It’s a slow, grieving process, that each day seems to chip away a bit of our marriage. I am painfully aware that he is not with us when we go places and that we are losing dear Curt as he slips more and more into the big black hole of Alzheimer’s. He may be physically with us for something, but I can assure you the Curt that is with us, is not the same fun loving, active, involved, Curt that I have known for 22 years now.
(I just had to post this OLD pic of Curt, but as you can see he was such a fun loving, goofball Dad!! He let the kids duct tape him to a tree!!!!)
As I was pondering much of this in my heart, I read the words below at a dear friend’s blog. Her husband has had numerous surgeries for a brain tumor that has also caused endless seizures. Her thoughts seem to reflect much of what I have been feeling. So I am going to borrow Helen words from Mom of Six
“ There is peace in my heart, we have times of laughter, I am thankful to God for so many things but life is not as it once was and it’s not as it should be. God created Adam and Eve in that garden as perfect humans. There was not cancer, pain, sadness, sin. But when sin entered the world all of that changed.
And yes, I believe God is sovereign over all. I believe that He uses ALL things for our good, even brain tumors, BUT they are a result of the fall and one day…oh one day…it will be different.
Rev. 21: 1, 3-4 Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea…And I heard a loud voice from the throne saying, “Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”
Phew, thanks Helen for helping me put some order to my scattered thoughts and ever shifting emotions! We press on for there is Hope in knowing there will be a new Heaven and a new Earth, and Curt will be made new and whole again!
I do have a big prayer request to mention. Curt still struggles with the anger issue, it really has not gotten any better, I think I have just grown more numb to it all and have not let it consume me as it once did. But we must find him a local neurologist. We had planned to see an excellent neurologist in Hershey, but his practice is moving to NY. Thus I am back to starting over. So please pray that I can find someone local ( I do have a few names to call), that Curt will be willing to go, and that we can get in soon!! (I am afraid that will be the hard part!!) Curt really needs some kind of med to help with the anger. The things he says is just NOT HIM and I am the one he blames for everything. I am glad it’s not the kids, but I do grow weary of it. Tough to listen to!
Thanks friends and readers, I can not tell you how blessed we are by so many of you!!! Can I just tell you how stinkin nice the people of this community are! We have been blessed with meals and so many little acts of kindness!! <3 We are thankful!
I also have a fun praise that I will post soon…….it’s a story of God’s providence for us through a lawn mower! But that will have to wait for another day.