I found this post waiting to be posted from...I don't know how far back. Ooops! I think it fits inbetween the med change post on February 23rd and the Mayo update on March 9th, so I'm gonna just throw it in on February 28th to try to keep it in order.
I apologize for the lengthy time between my last update and this one. It has been a bit of a whirlwind for me, and I'm trying to settle back in from a couple of crazy weeks.
For starters, it kinda feels like we're back at square one as far as meds are concerned: The new ones haven't quite taken effect yet, and the old ones are pretty well out of his system already, so he's back to the short, agitated, unfocused, repetitiveness, but with a renewed obsession with food, which I kinda thought would have gone away once he got off the Invega. He started the one med (Celexa) the day of my last post, but the day after that, he was having so much trouble sleeping that we also added in a low dosage of Trazodone for sleeping, which has been working well. But...as I mentioned before, he's back to the intense obsession with food again, so we've got to get that figured out. Both of the new meds are antidepressants (as opposed to antipsychotics), one of which to boost his energy level a bit (Celexa), but the other (Trazodone) is more of a sedative for sleeping. Both are SSRIs, which are the recommended class of medications to treat Frontotemporal Dementia, especially of the behavioral variant, which is what he has (bvFTD).
I don't think I have mentioned how well he has taken to the CPAP machine, but it is going INSANELY well, and I would be shocked except for the fact that I know I have a lot of people who have been praying specifically for him to not fight it. It's like his favorite thing now too, so it's not only that he wears it, he wears it excitedly and willingly each night. I keep waiting for him to begin bucking the system, but
Wednesday, February 28, 2018
Lately in Windom (February 2018)
Time is just flying around here! Kendrick had his first Winterfest performance, and he did so great!
It's questionable if our laundry ever really stays clean long enough to wear it lol
She is growing so, so, so fast :(
I love that my kids are such big fans of AWANA! I also love that they take pictures so I can have some for the scrapbook pages I really hope to someday get to make.
I had a rare day trip to Humboldt (the first since Mom's funeral, which is hard to believe, as frequently as we usually get down there)
with just the babies for a bridal shower for our sweet SIL Molly and my brother Jason.
*Almost* all the girl "Ropte" cousins.
She fits right in with the boys. Apparently a foot to the face is hilarious!
This month brought three trips to Mayo Clinic in Rochester for Mark. Kinsley and I joined him on two of those, and his Dad took him for the other one. It has been a busy month, full of stuff we were hoping we'd never have to deal with. But these appetizer taco things were AWESOME along the way. I hadn't been to Applebees in ages, and it was on point!
This little lady is a BIG fan of the splashy water lol
A little glimpse into Mark's brain right now: He decided to go down to the lobby for some of the yummy flavored water at 3:30am to fill up our water bottles (he had slept poorly, as had I). Well...five minutes later he comes back up and says, "They didn't have any water left in the things, but they did have coffee, so I got you some." At 3:30am. Because, you know, they're practically the same thing. I guess I've gotta give it to him that at least he remembers that I do like coffee, but I was kinda hoping that i'd get a little more sleep in before his appointment at 8am.
The hardest part of this whole process has been all the waiting. I really do love this man, but the waiting is exhausting.
The view from the psychiatrist's office at Mayo. We had about 20 minutes of waiting while she went to discuss a few things with the staff Psychiatrist.
I just can't even handle her sass!
How is it possible that they are all mine?
This little lady is constantly scooting herself under the crib.
It is getting less and less messy to make cookies with these kiddos, which I am loving! I figured out the secret to minimize the mess is to 1) Only make half a batch, so it doesn't take as long, and 2) to roll them out between two sheets of parchment paper so that the table doesn't become a hot mess.
Two things about this photo: 1) I am so glad that we got this fun big disk swing! I have a feeling it's going to be a big hit this spring. 2) Pretty sure this summer we're going to be looking at replacing our siding. Kinda wishing we'd taken care of this when we had dual income, but at least we'll just offset the cost with selling the car which we won't use anymore now that Mark isn't driving.
This kid woke up sounding really horrible, so I kept him home just sure he had strep. We started the morning with a pillow fort. Turns out, he didn't have strep, and started sounding much better throughout the day, so he went to daycare and I went back to work afterwards.
He really does love these kiddos. I am hopeful that switching him to antidepressants will help bring some of his personality back, even if he still will slowly (or maybe not so slowly) decline overall in the days to come, so he can truly enjoy and embrace these kids.
It truly is a winter wonderland here some of the time in the winter.
This is about how our evenings go. Mark is VERY helpful with anything having to do with food, mainly on account of the constant med adjustments. He asks me about 50 times from the time I get home with the kids until we eat what, or when we are eating supper. And then, the second it is done, he grabs whatever it is as fast as he can, scarfs it down as fast as he can (regardless if we're sitting down or not), and then declares that he's done, goes to shower, and then goes right to bed. I really do miss our "normal"
family meal times together, but such is life with FTD.
This little stinker is such a hoot these days!
These little brothers absolutely adore Miss Kinsley Jo. We call her "Sissy pants" or "Sissy kicky pants" lol
This kid has taken to the snow much better than his brothers ever did at this age. He gets so excited!
Gotta start them early!
Cashel is getting SO big these days! He's my little man of the house. In many ways, he's more mature than his Daddy is right now, and certainly more helpful. It makes me sad, but then also makes me realize just how blessed I am to have kids who are so sweet and caring and who step up...at least some of the time haha Still, he's a kid, and as such, he loves being a silly goofball :)
Woody the Woodpecker has been a favorite in the month of February. We went out for a drive one Saturday morning in the winter wonderland and heard some strange bird sounds I hadn't heard before. Cashel was convinced it was Woody out there in the woods lol
My little snow angel :)
This kid is so sassy!
He's growing up way too fast, but still my tiny little guy :)
Little miss LOVES bath time now! It took her a good 5 months to get to that point, but it's her favorite!
We finally upgraded our dishwasher, and are SO THANKFUL to John Shamp for installing it for us! It is so quiet that we hardly know it's working, and our dishes have never been cleaner.
I'm so glad Ryan is finally through this stage. He was constantly sticking his foot right in my face. Love this kid, but that was SO ANNOYING!
I finally started packing away all my baby girl's 3-6 month clothes. It's just not even possible that she's that big already :(
Gearing up for my baby brother's wedding next month! I LOVE this dress!!
This little lady has so much personality these days. I LOVE it!
Creating Valentine's is apparently very messy and depressing work.
This one is always having to eat random things for no reason.
Sissy Kickypants was a rockstar for her 6 month checkup. She's my first baby who, at this point, was actually on the charts lol
One of the most annoying habits Mark has is his completely insane obsession with food. He talks about food ALLLLL day long. His favorite by FAR is HuHot. When we've been going to Mayo, he talks about going to HuHot incessantly for a week leading up to it. In fairness, HuHot is SO good. But...I'm so exhausted from hearing about it.
We spent Valentine's Day this year in Rochester getting the life-changing diagnosis that I was truthfully expecting, but still left me a hot mess. We started, though, with lunch at...you guessed it...HuHot.
My favorite guy at his favorite place. He always gets the same thing: Beef, broccoli, mushrooms, noodles and the mild sauce (the first recipe hanging above). He has gotten this every single time since our first date on April 22,
2005. And practically every single time I've been there, I've gotten chicken, noodles, sprouts, carrots, peppers, onions, pineapple and some variation of the sweet & sour recipe.
This was a LONG waiting room visit. I love this man so much, but oh my goodness if I could never have to sit in a waiting room with him ever again, it'd be too soon. I think we waited about 45 minutes for a 15 minute appointment. By the end of the wait, he was saying loudly every 10 seconds, "I wonder when the doctor is going to be ready. We've been waiting a long time. It has been {number of minutes here} minutes we've been waiting."
On another note, I felt like we had a ridiculous amount of sympathy while we were there. I don't think there's another place where you regularly hear the sentence, "This is why we're here".
I got to help out with this kid's Valentine's Day party at preschool. It always amazes me how sweet and calm and quiet and gentle my kiddos are when they're not at home and/or around each other. lol
Preschool art is just the best!
Off to the doctor for these two dudes. Neither of them were actually sick (go figure), but I thought Kendrick may have had strep and Ryan might have had an ear infection. Turns out, just a couple of colds.
Kinsley's first food was squash...and she was NOT a fan lol
The toys at Grandpa and Grandma's house are always so much more fun than the ones at home...and cleaner lol
A girl I met on a FB Dementia Caregivers Support group posted this. Her husband also has bvFTD, and this is apparently the difference between a normal brain (left) and one with Dementia.
Word to the wise: You can't leave your big kids in a room by themselves with the Amazon Echo. So glad I get emails for Amazon Prime purchases, or we would be the proud owners of this lol
A few weeks ago, I was treated to an entire afternoon of "me" time. (Well, me time with Kinsley,
which is basically the same thing). I got a hair cut (while she screamed...woke up from her much-needed nap too early), then went an sipped a latte in front of a raging fire at Phileo's in Worthington, nursed her back to sleep, and rested and caught up on texts/lists/reading for about 90 minutes. We then shopped for a bit. It was so good for the soul! A huge thanks to the in-laws for keeping the other 3 kids and Mark for the day to make it possible!
Baby toes!!
How poignant! My fortune from our supper at Panda House later that evening.
Went to go reheat my coffee to find my coffee that I had tried to reheat from the day before. Weekend coffee isn't really a thing most days lol
Mark really is slowly starting to re-acclimate to the household, but this was back in the days when he mostly just laid in bed all day. The kids still seek him out, and even little Ryan, who never has known him "well" is starting to really love on him. It's so sweet :)
You can't dare lay on the floor in our house, or this happens.
I came into work on a particularly rough Monday to find this note on my desk. My good friend Jill 'fessed up to writing it the prior Thursday, not knowing I would be out Friday. This year has been an emotional one, and while I wouldn't say I've been hard on myself, there are days when I need this reminder that I am not always who I am when I'm at my worst, and that those "worst" days aren't the one that define me.
Mornings around here consist of this
Definitely trying this very soon!
These kids lol
It's a catch-22 with these kids. We put the cups low enough so that they can get at them without climbing on the counters (safety, first!). However, when we put them low enough, even the toddler can get at them (and if we put them slightly higher, he drags something over to stand on - argh!) and then fills them with water. Well...ALL of them fill them with water (or other beverages) and leave them all over the house to be spilled. Or, you know, do this, so that you have to wash them all again. #MomLife
A year ago, I was feeling really challenged in a study I was doing to really focus on the positive things Mark was doing. This was before I knew there was something terribly wrong. This was when I thought maybe I was just being pessimistic and expecting too much from him. This was back when I thought we just needed marriage counseling to get through a rough spot. Still, it stuck. I think sometimes I'm so quick to point out where Mark has changed that I forget to realize what hasn't. He still changes diapers. He still helps get the kids dressed most days. He still takes out the garbage and the recycling. He still sets the table for supper every night. He still makes sure the food is put away. He still folds laundry some of the time. He still reminds us that he loves us multiple times a day.
Can I get an "Amen"?
Since I don't have glasses or contacts, I didn't think about the fact that Mark never seemed to change his out. I switched him to my vision insurance, so I called in to get both of us vision exams, since we were covered anyway, and found out he hadn't been in for an exam in...THREE YEARS! I got him in ASAP, and as it turns out, using the same prescription...and the same pair of contact lenses (!!!!!!!!!) for THREE YEARS did very little damage, and his prescription is practically the same. Still...wowza!
This kid had his 6 year checkup and is still off the charts in all areas.
After it had been sitting in the garage for quite some time, I decided to put the Tahoe up for sale. The problem was that I couldn't get it to start, and it was sitting in the front of a tandem garage. Mark tried hooking up the battery charger, but after a day, it was still no dice. I tried it again myself, and nothing. A week later, I finally texted Mark's buddy Jamie and he said, "Well, you'll have to wiggle the cables a bit until you see sparks." Learning new things every day! Thanks, Jamie!
It's questionable if our laundry ever really stays clean long enough to wear it lol
She is growing so, so, so fast :(
I love that my kids are such big fans of AWANA! I also love that they take pictures so I can have some for the scrapbook pages I really hope to someday get to make.
I had a rare day trip to Humboldt (the first since Mom's funeral, which is hard to believe, as frequently as we usually get down there)
with just the babies for a bridal shower for our sweet SIL Molly and my brother Jason.
*Almost* all the girl "Ropte" cousins.
She fits right in with the boys. Apparently a foot to the face is hilarious!
This month brought three trips to Mayo Clinic in Rochester for Mark. Kinsley and I joined him on two of those, and his Dad took him for the other one. It has been a busy month, full of stuff we were hoping we'd never have to deal with. But these appetizer taco things were AWESOME along the way. I hadn't been to Applebees in ages, and it was on point!
This little lady is a BIG fan of the splashy water lol
A little glimpse into Mark's brain right now: He decided to go down to the lobby for some of the yummy flavored water at 3:30am to fill up our water bottles (he had slept poorly, as had I). Well...five minutes later he comes back up and says, "They didn't have any water left in the things, but they did have coffee, so I got you some." At 3:30am. Because, you know, they're practically the same thing. I guess I've gotta give it to him that at least he remembers that I do like coffee, but I was kinda hoping that i'd get a little more sleep in before his appointment at 8am.
The hardest part of this whole process has been all the waiting. I really do love this man, but the waiting is exhausting.
The view from the psychiatrist's office at Mayo. We had about 20 minutes of waiting while she went to discuss a few things with the staff Psychiatrist.
I just can't even handle her sass!
How is it possible that they are all mine?
This little lady is constantly scooting herself under the crib.
It is getting less and less messy to make cookies with these kiddos, which I am loving! I figured out the secret to minimize the mess is to 1) Only make half a batch, so it doesn't take as long, and 2) to roll them out between two sheets of parchment paper so that the table doesn't become a hot mess.
Two things about this photo: 1) I am so glad that we got this fun big disk swing! I have a feeling it's going to be a big hit this spring. 2) Pretty sure this summer we're going to be looking at replacing our siding. Kinda wishing we'd taken care of this when we had dual income, but at least we'll just offset the cost with selling the car which we won't use anymore now that Mark isn't driving.
This kid woke up sounding really horrible, so I kept him home just sure he had strep. We started the morning with a pillow fort. Turns out, he didn't have strep, and started sounding much better throughout the day, so he went to daycare and I went back to work afterwards.
He really does love these kiddos. I am hopeful that switching him to antidepressants will help bring some of his personality back, even if he still will slowly (or maybe not so slowly) decline overall in the days to come, so he can truly enjoy and embrace these kids.
It truly is a winter wonderland here some of the time in the winter.
This is about how our evenings go. Mark is VERY helpful with anything having to do with food, mainly on account of the constant med adjustments. He asks me about 50 times from the time I get home with the kids until we eat what, or when we are eating supper. And then, the second it is done, he grabs whatever it is as fast as he can, scarfs it down as fast as he can (regardless if we're sitting down or not), and then declares that he's done, goes to shower, and then goes right to bed. I really do miss our "normal"
family meal times together, but such is life with FTD.
This little stinker is such a hoot these days!
These little brothers absolutely adore Miss Kinsley Jo. We call her "Sissy pants" or "Sissy kicky pants" lol
This kid has taken to the snow much better than his brothers ever did at this age. He gets so excited!
Gotta start them early!
Cashel is getting SO big these days! He's my little man of the house. In many ways, he's more mature than his Daddy is right now, and certainly more helpful. It makes me sad, but then also makes me realize just how blessed I am to have kids who are so sweet and caring and who step up...at least some of the time haha Still, he's a kid, and as such, he loves being a silly goofball :)
Woody the Woodpecker has been a favorite in the month of February. We went out for a drive one Saturday morning in the winter wonderland and heard some strange bird sounds I hadn't heard before. Cashel was convinced it was Woody out there in the woods lol
My little snow angel :)
This kid is so sassy!
He's growing up way too fast, but still my tiny little guy :)
Little miss LOVES bath time now! It took her a good 5 months to get to that point, but it's her favorite!
We finally upgraded our dishwasher, and are SO THANKFUL to John Shamp for installing it for us! It is so quiet that we hardly know it's working, and our dishes have never been cleaner.
I'm so glad Ryan is finally through this stage. He was constantly sticking his foot right in my face. Love this kid, but that was SO ANNOYING!
I finally started packing away all my baby girl's 3-6 month clothes. It's just not even possible that she's that big already :(
Gearing up for my baby brother's wedding next month! I LOVE this dress!!
This little lady has so much personality these days. I LOVE it!
Creating Valentine's is apparently very messy and depressing work.
This one is always having to eat random things for no reason.
Sissy Kickypants was a rockstar for her 6 month checkup. She's my first baby who, at this point, was actually on the charts lol
One of the most annoying habits Mark has is his completely insane obsession with food. He talks about food ALLLLL day long. His favorite by FAR is HuHot. When we've been going to Mayo, he talks about going to HuHot incessantly for a week leading up to it. In fairness, HuHot is SO good. But...I'm so exhausted from hearing about it.
We spent Valentine's Day this year in Rochester getting the life-changing diagnosis that I was truthfully expecting, but still left me a hot mess. We started, though, with lunch at...you guessed it...HuHot.
My favorite guy at his favorite place. He always gets the same thing: Beef, broccoli, mushrooms, noodles and the mild sauce (the first recipe hanging above). He has gotten this every single time since our first date on April 22,
2005. And practically every single time I've been there, I've gotten chicken, noodles, sprouts, carrots, peppers, onions, pineapple and some variation of the sweet & sour recipe.
This was a LONG waiting room visit. I love this man so much, but oh my goodness if I could never have to sit in a waiting room with him ever again, it'd be too soon. I think we waited about 45 minutes for a 15 minute appointment. By the end of the wait, he was saying loudly every 10 seconds, "I wonder when the doctor is going to be ready. We've been waiting a long time. It has been {number of minutes here} minutes we've been waiting."
On another note, I felt like we had a ridiculous amount of sympathy while we were there. I don't think there's another place where you regularly hear the sentence, "This is why we're here".
I got to help out with this kid's Valentine's Day party at preschool. It always amazes me how sweet and calm and quiet and gentle my kiddos are when they're not at home and/or around each other. lol
Preschool art is just the best!
Off to the doctor for these two dudes. Neither of them were actually sick (go figure), but I thought Kendrick may have had strep and Ryan might have had an ear infection. Turns out, just a couple of colds.
Kinsley's first food was squash...and she was NOT a fan lol
The toys at Grandpa and Grandma's house are always so much more fun than the ones at home...and cleaner lol
A girl I met on a FB Dementia Caregivers Support group posted this. Her husband also has bvFTD, and this is apparently the difference between a normal brain (left) and one with Dementia.
Word to the wise: You can't leave your big kids in a room by themselves with the Amazon Echo. So glad I get emails for Amazon Prime purchases, or we would be the proud owners of this lol
A few weeks ago, I was treated to an entire afternoon of "me" time. (Well, me time with Kinsley,
which is basically the same thing). I got a hair cut (while she screamed...woke up from her much-needed nap too early), then went an sipped a latte in front of a raging fire at Phileo's in Worthington, nursed her back to sleep, and rested and caught up on texts/lists/reading for about 90 minutes. We then shopped for a bit. It was so good for the soul! A huge thanks to the in-laws for keeping the other 3 kids and Mark for the day to make it possible!
Baby toes!!
How poignant! My fortune from our supper at Panda House later that evening.
Went to go reheat my coffee to find my coffee that I had tried to reheat from the day before. Weekend coffee isn't really a thing most days lol
Mark really is slowly starting to re-acclimate to the household, but this was back in the days when he mostly just laid in bed all day. The kids still seek him out, and even little Ryan, who never has known him "well" is starting to really love on him. It's so sweet :)
You can't dare lay on the floor in our house, or this happens.
I came into work on a particularly rough Monday to find this note on my desk. My good friend Jill 'fessed up to writing it the prior Thursday, not knowing I would be out Friday. This year has been an emotional one, and while I wouldn't say I've been hard on myself, there are days when I need this reminder that I am not always who I am when I'm at my worst, and that those "worst" days aren't the one that define me.
Mornings around here consist of this
Definitely trying this very soon!
These kids lol
It's a catch-22 with these kids. We put the cups low enough so that they can get at them without climbing on the counters (safety, first!). However, when we put them low enough, even the toddler can get at them (and if we put them slightly higher, he drags something over to stand on - argh!) and then fills them with water. Well...ALL of them fill them with water (or other beverages) and leave them all over the house to be spilled. Or, you know, do this, so that you have to wash them all again. #MomLife
A year ago, I was feeling really challenged in a study I was doing to really focus on the positive things Mark was doing. This was before I knew there was something terribly wrong. This was when I thought maybe I was just being pessimistic and expecting too much from him. This was back when I thought we just needed marriage counseling to get through a rough spot. Still, it stuck. I think sometimes I'm so quick to point out where Mark has changed that I forget to realize what hasn't. He still changes diapers. He still helps get the kids dressed most days. He still takes out the garbage and the recycling. He still sets the table for supper every night. He still makes sure the food is put away. He still folds laundry some of the time. He still reminds us that he loves us multiple times a day.
Can I get an "Amen"?
Since I don't have glasses or contacts, I didn't think about the fact that Mark never seemed to change his out. I switched him to my vision insurance, so I called in to get both of us vision exams, since we were covered anyway, and found out he hadn't been in for an exam in...THREE YEARS! I got him in ASAP, and as it turns out, using the same prescription...and the same pair of contact lenses (!!!!!!!!!) for THREE YEARS did very little damage, and his prescription is practically the same. Still...wowza!
This kid had his 6 year checkup and is still off the charts in all areas.
After it had been sitting in the garage for quite some time, I decided to put the Tahoe up for sale. The problem was that I couldn't get it to start, and it was sitting in the front of a tandem garage. Mark tried hooking up the battery charger, but after a day, it was still no dice. I tried it again myself, and nothing. A week later, I finally texted Mark's buddy Jamie and he said, "Well, you'll have to wiggle the cables a bit until you see sparks." Learning new things every day! Thanks, Jamie!
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