Change

Working in the IT industry as an application developer, you'd be amazed at the amount of times I've gone out to troubleshoot an issue to find one of my beloved applications not working at anywhere near acceptable levels, for one reason or another. Upon addressing the issue with the users, they say, "Well, it's just always been that way, so we figured we'd just have to live with it". And I kid you not when I say that approximately 98% of the time, it can be resolved with a less than 5 MINUTE fix. The problem was, the user never communicated to me that there was an issue to begin with. They accepted that this degraded state of the application response time or functioning was the way it always had to be. But once the "right" person (a.k.a. the developer, who knows the source code since they WROTE it) observed the issues, it was resolved in no time at all.

If anyone knows me well, you know that while I might be chatty once I know you, I'm also not a person who enjoys the spotlight or wants to ruffle any feathers. Much like many of my end users, I like to be part of the status quo. My personal stance on rocking the boat is that it tends to cause upset stomachs, and after going through one particular week in 2019 where I had 3 kids staggered with a 3 day stomach bug that lasted the better part of a week, I mean...if I never hear or smell those sounds or smells again in my lifetime, it would be too soon. Rocking the boat; challenging the status quo, that's not me.

I'm the person who would go to a restaurant and order shrimp tacos and have them serve me a hamburger with fries, and I wouldn't even say anything and would still appropriately tip the waitstaff, even though they may not have filled my water even once. That's just me. Speaking up for something benefiting myself is just not something I tend to do.

HOWEVER...

Speaking up about truth and describing your experiences doesn't always necessarily entail rocking the boat. Sure, it can, but the overall gist is that if you don't know that there is a problem, no one is going to address it.

I've said since the beginning of this journey that if God is bringing me to this place, He ass provided me with all the means I need to survive it without sacrificing any more than is necessary for this journey. But that isn't the case for SO many more people who are facing this same reality. And for those people? For THOSE people, I want to "fight".

According to the Oxford Academic website, the year I was born was the year when the first Assisted Living facility opened in the United States. So 38 years ago, that's when the change began. Someone saw the need for a place like this, and so they created it. Thirty nine years ago, I cannot fathom what I would have done in my situation. If not for Assisted Living, we may all not have survived this.

But truthfully, for diseases like bvFTD and so many others in which there are people with frontal and temporal lobe damage, they're just not the right places. The overall concept is, for sure, but there are certainly legislature changes that would be game changers in cases like this.

For one, the way things work for Assisted Living is that if the patient is not a danger to themselves (suicidal) or others (homicidal), and they cannot get better (terminal disease), there is no safe place for them to undergo medication changes. Places designed for med changes for dementia patients...they have age limits, and Mark doesn't fit those limits. (He's 40, and the minimum accepted there is 65) If that patient is a danger to themselves or others, they're able to undergo this in a mental hospital, which, well...that's kinda terrifying, not only for the patient, but for their families. I facilitated about 5 different medication adjustments for my husband at home with 4 young children. Five. And yet, put ONE in place in a facility, and they're ready to give him the boot. All they really need is a safe, comfortable place to let it all work out with a comfy recliner in front of the TV, a walking path, and some snacks. A place that isn't a hospital.

Secondly, it feels like everyone is scared to death to take the necessary precautions for an FTD patient. Regulations disallow them to be "locked up", while they'd likely be perfectly content with a recliner, bed, TV and snacks in a locked room with a view (or maybe not). Instead, health professionals continue to encourage them to be placed in a group home, where they are then in a home with a bunch of other people who may or may not irritate them or annoy them (or whom they may irritate or annoy) with an open fridge and the ability to come and go as they please. For a bvFTD patient, this is a disaster waiting to happen. The alternative, which is the reality I'm living with currently, is that you pay $28/hour for a personal aide to come and basically babysit them while they watch TV and eat snacks all day, making sure they don't bother the other residents. A $200 lock seems significantly more efficient than a $12-13K bill each month, no?

With bvFTD, many patients, including my husband, have an insanely insatiable appetite. Like...a gain 80-100lbs in a year appetite. Add in the meds to calm their OCD behaviors that also increase appetite, and it's the perfect storm, especially since FTD causes the regulatory part of the brain to stop functioning. So the disease gives them OCD about eating, the part of their brain that says to stop doesn't work, and then we give them meds that make them hungrier. It's a disaster! But all the assisted living and group home environments...they give each room a fridge in their rooms, because who doesn't want snacks? So it's impossible to keep them out of every single room, when they know full well that there is food in those fridges. Food seeking (as well as exit-seeking) behaviors are ridiculously difficult to manage with a bvFTD patient, and yet food is basically kind of an all access kind of thing with all the rooms open and candy dishes on display.

I'm learning in this moment that if I need to experience more trauma, that there is a purpose in it. I can either internalize that trauma and let it eat me alive, or I can use it and purpose it for good. I can squander what I've learned and let it be for nothing, or I can talk about it, open up, and help connect people with help they need. I can be an encouragement, or I can be a burden. My circumstances won't change in light of the decision I make, but my mindset can.

This is why I speak up! This is why I'm an open book when it comes to this stuff. Because without Paul and Terry Klaassen, the guys Google says came up with this whole Assisted Living plan, who knows if Assisted Living would have become an option. Without someone knowing about FTD, there would never be a treatment or cure. Without someone knowing that we need medications that can calm someone with FTD down without significantly damaging their liver, no one will create one. Without the world knowing that FTD is killing my dear, sweet husband, no one will see that there is a problem to be solved. Without talking openly with different medical staff and opening the conversation, the dots may never be connected.

Change terrifies me, guys. It really, really, really does. But it's also necessary for growth.

Chair Number Four...Er...Uh...I Mean Five

I ordered the fifth chair we've had to replace in Mark's facility last night. Fifth. He has managed to ruin 5 chairs in the past 2 years, and honestly, when I started this blog post, it was only 4, and I had to change it to 5, because the next day, the other chair broke as well. He had a little incident where he actually fell while laying across the chair on his belly, breaking it. It's hard to envision making it all up, honestly, but I guess at least I'm still in the mindset of dealing with small children and seeing things get broken constantly around our own home, so I guess it's just par for the course, huh?

So far, we've seen the demise of a large cuddle recliner, a very expensive rocking recliner, and two basic recliners, and a stand alone very sturdy comfy chair. All of them have broken due to him plopping down on them and being so severely overweight that the force of his weight in the chair busts the mechanisms. (Except the last one. The last one, the one that has lasted the longest, was the cloth lining holding up the cushion separated.)

So for a couple days, instead of two nice chairs, we had zero, aside from a camp chair that I had randomly brought with me when I picked up chair #4 for disposal.

It's all these odd little things that add up to make life colorful to say the least when dealing with bvFTD. Repeatedly replacing large chairs (5 times), box springs (twice), bed frames (twice), tablets, TVs, going through a whole bottle of body wash in a week, the same with toothpaste. Slippers that wear out in 3-4 months. Making sure to remove all the clothes that are too small and replacing them with bigger ones. The small things aren't as bothersome, but the large things...those are exhausting. It's lining up someone with a truck to pick up and dispose of box springs that wouldn't fit into my minivan.
It's doing that again with the replacement boxspring. It's finding the time to go up and assess if the chairs can be repaired. If it CAN be repaired, then I've got to find someone who can repair it in an extremely timely manner...in Mankato...so that Mark cannot sit in it (because he would absolutely sit in a broken chair if presented with the opportunity) and hurt himself. However, if I determine that it cannot, arranging to make sure that the kids don't have to be in the minivan when I go to pick up these chairs (i.e. babysitters for 4) on a day where the dump nearby is open (i.e. NOT on a Sunday). Trying to gauge whether or not I can fit it into my minivan or if I have to then line up someone else to come help (with the box springs for sure - a huge thanks to Joe Saffert the one time and Ron Matthews the other). It's figuring out car seats and childcare arrangements and timelines. It's taking vacation time to deal with these things so that I don't have to make additional plans on a Saturday.

It's exhausting. And, of course, in the back of my head, when I'm purchasing the next replacement furniture, I am always keeping in the back of my mind whether or not I'll have space for it in our home down the road, or if I'll have to sell it. And if I have to sell it, is it going to maintain any sort of value in the end? Or will it just be wasteful and fill the landfill once again. It's morbid, but it's a necessary thought. Sometimes I feel like I need to find a financial adviser to meet with weekly just like my therapist simply to discuss what makes the most financial sense week to week. (But, of course, what makes the most financial sense isn't always something that's within the realm of possibility for me feasibly with all I've got going on).

So this...this is what life looks like for me: It's colorful, to say the least. But there will come a day where none of this will be a part of my life anymore, and when that day comes, I'll be looking back on these days with a smile, and reassuring some other FTD spouse or family that it is perfectly "normal" when it comes to FTD to have these kinds of absurd issues to deal with.

The Big Apple - Part 2 (December 2019)

After my first big whirlwind day traveling to NYC and exploring a bit, the second day was more of the same!

I was up by 5:40am, after which I promptly showered and got ready to go, including packing things up again, and was in the lobby to find my contact at 7:15am. She walked me over to the studio, where I was taken to a "green room" as they called it (basically a waiting room).

Around 8am, they took me back to hair and makeup to get touched up.

Voila! It felt strange being so dolled up!

I was shown back to my waiting area, where I vegged out for a little bit, then met with the producer to go over how the interview would go. She said we'd be doing 4 segments, and each would be covering a different piece of the story. She had taken some notes on our phone interview and went over the basic breakdown of them, and the basic responses they would expect based on them, and which parts of what I had said previously she wanted to make sure I covered in my responses. That took probably about 25 minutes, after which I sat and just waited a little longer.

I chuckled when sipping on my tea when I saw the lipstick on the lid. It has been a very long time since I've worn the kind of lipstick that comes off when you're drinking!

Just before 10am, they came up to get me and brought me down to the set!

Caroline and Amy were so great to work with!

If I had realized how poor quality this photo was going to be, I definitely would have taken another! Felicia was the producer, and she was so, so sweet!

It didn't take long before I saw Mel walk past quickly onto the set, and then it was go time! They played a little clip that I had filmed from the night before, and then I was on! Before I went on, they cut the film, then had me walk in and sit down. I was oddly enough not really all that nervous, and Mel was so easy to chat with. I broke down a number of times, just seeing some of the clips that were on, and some of the videos I had sent them, side by side with pictures of Mark and I from when life was normal and good.

Just before the last segment was filmed, we talked more about HOW I had come to be on the show: That my friend Sarah had written in. They played a little video message from her, which, of course, brought me to tears. She's such a good friend, and I know she cares and just wants what's best for me, but it was hard to hear her say those things. And then...they brought her out, and I about fell on the floor!

I know with these things, people always assume you know that this kind of thing is going to happen, but I seriously had no clue whatsoever! Sarah had just started a new job in October, and she had just had to burn all of her vacation time on a pre-planned vacation with her sisters the week prior. We're talking multiple times throughout each day on our commutes, lunch breaks, or after our kids are to sleep at night, so I already knew she was out of vacation time and already on a little bit of rocky ground as far as time off was concerned, so I was just absolutely stunned. It was SO GOOD to give her a giant hug, and be able to see her in person!

Sarah and I had met on an online pregnancy support group for our August 2013 babies, and we've kept in touch, along with a dozen other girls in that group for the past 7 years. However, I've only met our friends Cindy and Jennifer before, so it was so incredible to meet Sarah as well!

After finishing up another 5 minutes or so of the interview, we finished up our segment, snapped a picture with Mel, and then were whisked backstage again, where we met a sweet couple who would be on next talking about their son who was born with cerebral palsy. I was really bummed that I didn't get to see their segment, so I am was so excited to see it when it aired!

The production assistant told us that we had just a few final things to finish up and some papers to sign before we were to go off and enjoy some time together out on the town! And oh my goodness, ladies! It was just the BEST time! We had a solid 3 hours together, and we just explored our little hearts out! We made it to all the places I had been the night before: Broadway, Rockefeller Center (although not the skating rink) and then also added in Times Square.

I had heard SUCH great things about the macaroons from Bouchon from a blog I follow called The Mix and Match Mama (by Shay Shull), so, of course, we HAD to stop in and get some.

We had sushi over on west 47th street at Tender Sushi, and it was so, so yummy!

After our lunch, we decided to start making our way back to the studio to pick up our bags in time for our car to arrive.

We made it back to the studio with about 5 minutes to spare before our car arrived. We had a tiny bit of trouble getting our bags right away, but Amanda and Chris brought them down when they got the word we were back (thanks, guys!)

And then, just like that, we hopped in the car headed to the airport (together this time) and made our way home.

We ended up one gate apart, so we got to visit a little while longer, which was so nice as well!

This woman right here.

Man, I just love her to pieces! I'm still a marginal amount mad at her for going behind my back, but she gave me an incredible gift: 2 days away from home in NYC at Christmas time, and a handful of hours with her. She has been one of a handful of my biggest supporters through the horrors of FTD. She has watched me spiral out of control when everyone else thinks I've got it together. She has seen all the tears no one else does. She has watched me go through the gamut of emotions, and make good choices and poor ones. She has consoled me and told me not to be so hard on myself. She's just one heck of an amazing person. This life isn't easy, but it's so much better with friends like her by my side. So thank you, dear friend! But also, promise me you'll never, ever, ever, ever again do this, mmmmkay?

To the crew at The Mel Robbins Show - THANK YOU! It was such a great experience, and I appreciate your attention to details and for whisking me away for a much-needed break and some pampering!

The Big Apple - Part 1 (December 2019)

I just got back from a whirlwind two days in the Big Apple (New York City), which was...well...it was a whole bundle of crazy!

I'm only just posting this now, because I've been under contract to not talk about the show or its contents until it airs, and well...it just aired, so now I can talk about it more.

I got a call from the team at The Mel Robbins Show after my dear friend Sarah wrote in to them to tell them about my story, and to ask them to help me out. And, I mean, I love the girl dearly, but to be honest, I was a little ticked when I first got the call from the production assistant to ask if I'd be willing to come on out for the show. I had specifically told her "no" when she initially asked me if I'd be okay with her writing in a number of months prior, but I had put it out of my head until a couple months ago when she said they were asking for my phone #. At that time, I told her I didn't want to do this, and that she didn't have my permission to give them my #. Except she did, and so I found myself on the other end of the line with a sweet lady named Caroline to talk about what it would take to get me on out there to the show. "Next week Wednesday/Thursday". ::insert super wide eyes here::

The strange part about these bizarre opportunities that I have had throughout this whole process is that somehow, everything lines up exactly. I feel like if it wasn't supposed to be a thing, then my childcare would be difficult to find. Or my work schedule wouldn't allow for it. Or someone would get sick. Or the flight times wouldn't line up. Or something. However, everything lined up easily and fell into place within a couple days, and Wednesday morning I was dropping my kids off at school, car seats off with my former daycare provider, and hitting the road to Minneapolis to the airport.

A few things I'll note about this whole whirlwind experience:

1. I'll never understand how going for a trip for 2 days requires so much stuff.
2. I seriously love people watching with coffee in an airport.
3. I never ever ever again will order a Bloody Mary "spicy". Also, on a related note, Bloody Marys do, indeed, contain tomatoes, so if you have a sensitivity to tomatoes, you might want to pass.
4. Cinnamon Gummy Bears are a delicious and perfectly acceptable lunch.
5. Never, ever, ever, ever, ever again will I leave my DSLR at home. It physically pained me to not have it with me to capture the beauty that is NYC at night at Christmas time.
6. It might be helpful to keep a travel mirror in my makeup bag.

The day was pretty uneventful as far as travel went, and I arrived at my destination around 6pm. The tail end of my flight was insanely beautiful, as the sun was just beginning to set.

I was whisked away promptly when I arrived and met a good chunk of the team. I must have missed the part about where I was going to be filmed right away, so that caught me off guard a bit, and I'm not so sure it was horribly flattering, but I digress :)

That took about 30 minutes, which, although the staff was super sweet and accommodating, I still have to admit was ridiculously awkward for me. I mean, I have no problem taking the occasional selfie, but this is a whole different ballgame. I've never had so much focus on which way I'm looking and never had cameras in my face quite to that degree.

After all that, however, a sweet young man walked me to my hotel and I was directed to be in the lobby at 7:15am.

Freedom!

When I learned that I'd be going to NYC, I knew I needed to get together with a generous benefactor who has been paying the facility costs since June, so we enjoyed going to dinner at The Greek Kitchen, just down the street from where I was staying at the Fairfield on E 57th Street.

We finished up around 9pm after a couple hours of wonderful conversation. He is such a great man, and I feel so fortunate to know him.

After we parted ways, I decided that with only one night in NYC, I might as well take advantage of it, especially considering the balmy 37 degrees outside! I started walking towards Broadway (about 3/4 of a mile) when I realized that my phone was about dead, and the battery backup that I brought with me was already spent, so after memorizing the map of where I was going, I kissed it goodbye as it shut off for good and made my way off on a fun adventure around NYC at Christmas time in the dark. I found Broadway quickly, then found the little Christmas shop and picked out some ornaments, trinkets and shirts for the kids, some gloves and hats from the street vendors, and just took in all the incredible lights. It was an incredible, incredible experience, and not being able to document it with pictures about killed me!

I made it back to my hotel around 11:30pm and after charging my phone, catching up on missed texts and polo messages, showed some of my friends all the cool stuff I found, and got ready for bed and settled in.

So that's day 1! On account of day 2 being pretty long and crazy, I'll recap that in another post.

Grief and the Holidays

I've had so many people ask me how, "really", am I doing in light of the holidays this year, so I figured this is probably something that might be appropriate to blog about, considering I feel like I had begun to give a canned response.

Grief this time of year is tricky. See, I'm two years out from the very worst things were in the midst of this. Sometimes that doesn't seem like it makes sense to people, as you might think that having Mark home would be favorable to having him in a facility. However, when Mark was home, our home was in a constant state of upheaval. I wasn't sleeping more than a couple broken hours every single night while still working full-time, nursing a baby and managing a household, complete with a husband with bvFTD.

Having Mark home on the 15th (be looking for a post on that soon)...it was wonderful! But it still wasn't the same as it was prior to FTD. We had a hired aide accompany him to keep him calm and provide ALLLLL the snacks. And we all knew it was temporary, just for a few hours.

I haven't quite figured out how to put into words how this works, because it's always changing, this grief. 100% of me wants him home, and 100% of me wants him not home. Simultaneously. It doesn't make sense. Sometimes I feel those things at different times, and sometimes it's all at the same time.

I think, honestly, a large part of the reason I don't wish I could go back and do anything over is that I really, truly did everything I could have thought to have done at the time. Even before his diagnosis, we had begun weekly date nights, so I feel I really did get to spend some "quality" time with him (even if he was already acting pretty bizarre).

I did every possible thing I could to make not only the holidays but also life in general as FTD-free as possible. We have some really great memories from when Mark was home.

Sometimes I feel 100% "fine" (however that is defined). People VERY often ask me how I'm handling the holidays without Mark here, and to be honest, I think Christmas is one of those holidays where it really doesn't hit me that hard. See, Mark always loved to eat the food and enjoy the Christmas decorations, but the man was NOT into decorating or making any of it at ALL. EVER. In some ways, I think that was God's gift to me, because if you know me, you know that I LOVE Christmas, and LOVE decorating, and LOVE celebrating and doing "Christmassy" things. So doing those things without Mark feels the same now versus when he was well.

I think my biggest personal growth over the past two years is that I am now so immersed into the life where I get no breaks that it no longer phases me. One of the comments Mark made when we were discussing him moving to Mankato initially was that he was very concerned about who was going to help me get the kids ready in the morning, and to be honest, at that point, the thought TERRIFIED me. Now that I'm accustomed to it (and my 5am alarm so I can manage all the things and people), I don't even blink. It's just my life.

I took all 4 kids (ages 7 to 2) to the movie theater by myself twice last month, and didn't even flinch. I've taken my kids on long weekend trips three times in the past two years. By myself.

When I look at 2 years ago compared to now, I can see how tremendously I've grown in that amount of time. I used to be extremely anxious and at times terrified at the thought of taking the kids to do something by myself, but now I've learned so much about it all, and realized that I CAN do these things without my helpmate, and I've grown accustomed to the level of insanity that ensues. I think initially when Mark was getting sick, the hardest part for me was trying to figure out how to parent when my husband was exhibiting behaviors worse than that of my small children. It was trying to figure out how to manage the kids and figure out how to leave the house, period. Throughout all of them, there were fair shares of ridiculously bad misbehavior, but I've just learned to expect it, and learned how to deal with it calmly, sometimes of which means leaving early.

I think given these major strides in development in my life, a huge part of the anxiety I was experiencing at all times has dissipated. Between that, my acceptance (most of the time) that this is what my life looks like now, and my acceptance that I cannot do more than what I have done to care for Mark more than what I can, I feel like my life has really settled into this place of mostly calm.

So entering into this Christmas season, things felt different for me. The lingering grief is always going to be a part of my life: A reminder of what we've lost. However, although I've learned what I can allow and not allow in my life as far as triggers are concerned, I cannot eliminate them all. I still find myself looking for a particular picture for one of our kids' school projects and coming across pictures of Mark healthy. I still find myself lingering too long in the outer perimeter if I go in the grocery store staring at the pickled herring. Someone still walks by wearing his cologne. Every once in a while the kids say something that Daddy would have said, not even knowing it. Those moments - those are hard.

So while in previous years, I had to stuff the grief down in place of managing the chaos and feeling like I had none of my ducks in a row and the ones who haven't wandered from my pond are now drowning, this year...it was different.

I certainly didn't have everything "together". However, this year, although we did a LOT more (including a short vacation with my big boys to visit a dear friend and her kiddos in Jacksonville), It FELT less chaotic, and more just busy, and then feeling the grief in those quiet moments.

I'm feeling more alone than in previous years, where I was drowning in a frigid ocean, where all I could focus on was survival. I'm now dried out by a warm fire on the beach, metaphorically, and looking around to realize what my life is now. And honestly, I don't feel like the holidays amplify those feelings, but my life in general does. In those rare occasions when the kids go to bed earlier, and I have most of the housework caught up as best as I can, I look around and realize that I don't even know who I am some days, or what my life looks like. I don't know what shows I want to watch on TV, and I don't know what types of books I feel like reading. I don't know what my favorite food is anymore (since my food sensitivities and subsequent testing of said sensitivities have ruled out pretty much anything with tomatoes or dairy). I'm trying to even decide if I like things I had previously convinced myself that I did, like wine and coffee, or if I had just told myself for years that I did. Music that I thought I liked I'm finding annoys me more and more. It's a very strange place to be, honestly, this re-discovery of myself; this mindfulness.

The holidays aren't really harder than any other day of the year, honestly, at least not for me. Of course, it's hard being around family in couples and managing the kids, and maybe more of that has to do with the part where that is my normal. I'm exposed to that in bits and pieces all year round. But this year? It's not really any different...FOR ME. I will say, however, that MANY people who are going through loss in the holidays, they aren't in the same place that I am. I feel like I've evolved, and am crawling out from where I was.

Maybe I'm jaded. Maybe I'm not letting myself truly grieve right now. Maybe it's supposed to hit me harder than usual. I guess I don't really care at this point. As I've learned in the past couple years of therapy, I get to feel how I want to feel right now. And if right in this moment I don't feel sad, then I'm not about to let the "enormity" of the holidays make me feel otherwise. Each phase of this journey is very important for the big picture that God has in store for me. So if I cry or don't cry, that doesn't really matter. If I grieve or don't grieve right now, that's okay too. If I stop looking at the big picture and focus on a tiny portion of it to get through this grief, then so be it. Whatever I choose to do to get through it, it's okay for right now.

I guess I just am coming more and more to accept that God is truly in control of it all. God is good. God's plan is significantly bigger than this minuscule role that I'm playing in it. There is not one thing I can do to mess up his plan for my life. Every single person I've met, every single decision I've made, every single place I've been has been part of his plan, and every single person I've yet to meet and every single decision I've yet to make and every single place I've yet to go, every single one holds some purpose in my life. Thinking about things in that mindset, well...it changes things.

I think the drastic difference this year is that I'm sad, but I'm no longer angry. I'm overwhelmed at times, but I'm not in despair, and most of the time, I'm not confused. I have grown and learned so much to the point where I realize that I have so much more to grow and learn, and while that used to overwhelm me, it now excites me.