Lately in Windom (January 2019)

I'm not sure why it took m so long for me to get sushi while in Mankato. I tried the hibachi grill over in the strip mall by TJ Maxx, and it was delicious!!

I had to stay overnight with Mark before he was SUPPOSED to have a liver ultrasound. I had cleared out his entire apartment of any and all snacks beforehand. This was just the bag of stuff he didn't care for. There was even more than this. Unfortunately, the liver ultrasound didn't happen because he ended up eating right before the test when I had to head back to Windom. Crazy!

He LOVES to look at the family photo books I've put together over the years! I wrote a whole blog about these books here.

Obviously Cashel wasn't thrilled at ALL about going for an eye exam. We found out he has astigmatisms in both eyes and had to have glasses. I think he looks SUPER handsome and smart in them, but he's not overly fond. He said everything looks "brighter", which I think is his way of saying it looks sharper and clearer, but he's not sure how he feels about it.

Bedtime with the littles looks mostly like this...but sometimes it's more like them tearing the room apart while I read to them.

Every once in a while I find a picture where I was fully intending to just taking a picture of my kids, and I slip in. This one in particular makes me smile. This baby girl just...man is she ever sassy! I know it's going to be an insane ride with this one, and I have a feeling she's going to change the world, because she does NOT take "no" for an answer.

I'm really becoming obsessed with these specialty mugs. I got this one when Cashel and I were exploring in Idaho Springs, CO at the end of the month for a wedding. They remind me a little of Mark and I's trip to Ireland when we went to the Medieval Banquet at Knappogue Castle.

Would love to seriously have a couple replicas...with the Mead that was inside. #GiveMeAllTheMead #HeDoesntDrinkSoDoubleForMe This was SUCH a fun trip! #Ireland2010

Hands' down, one of my top 5 best nights of my life! We had SO much fun at this medieval banquet.

For some reason, that particular trip has been coming to my mind a TON lately. I think about it at least once a day and have been for about two weeks. Man, do I ever miss this man! We adventured HARD when we were first married, and the memories are too many to recap.


I had almost forgotten about this, but am SO thankful that I remembered it! It could use a smidgen of patching, really, but still does the job.

My sweet daycare provider gave me the night off after a particularly rough week, so, of course, I got all the yummy stuff for a large salad and charcuterie platter.

These two are so adorable together (if they're not fighting, that is...)

Ohhhhh....take me back! I've found my new favorite Greenwell Farms coffee. And yes, I'm insane, and I've become a MAJOR coffee snob. I give myself those kinds of small luxuries to make up for all the other areas I have no chance at luxuries...like going to the bathroom in silence or sleeping without someone trying to inhale my hair.

I tell ya what: Most of the time, I feel like I'm failing my kids every single day. I yell too much, I expect too much of them, and they are SO wiggly during church that I feel like I'm doing all the people a disservice by bringing them. But this day? I had taken the big boys into the church library, because I was just so weary. Mark had been causing more issues at his facility, they wanted me to find another option, and between striking out left and right at finding a place, the kids had been ramped up, the winter was hitting with a vengeance, and I was just so freaking tired. I sat there in the church library quietly sobbing, and Cashel slipped this in my hand. Why is it that even my 7 year old son gets it, but I continue to struggle with it? God IS a hero. He has come through for us time and time and time again, so why do I doubt now?

We've been meeting at the place Kendrick goes in the afternoons at the beginning of the week to have a family check in with his teachers. They're trying to help us figure out how to "get along" as a family. We've all been through so much trauma with FTD that it's hard to figure out how to all communicate effectively (and for the kids, to play without hurting each other - argh!). It's fun to have some set aside time to play with my kids, and for them to play with each other :)

Every couple months, I get to sneak away for an hour or so and do a little shopping for myself. It's hard to see myself in the mirror sometimes: That belly bulge from housing my 4 sweet babies just doesn't seem to ever go away. I suppose that's what happens when you have all the responsibility and none of the actual time to manage anything beyond just the responsibility.

Cashel took a bunch of scraps from his new headboard and made himself a friend lol

This is why I never get enough water in a day: My water bottle is not my own.

So.freaking.weary of the snow.

Also beyond weary of all the snow gear required to just...go outside.

Same, girl. Same.

These guys, though? They could hang out here for DAYS if need be, with the promise of a piping cup of hot cocoa when they get inside...with mini marshmallows :)

I really do hope that one of my kiddos takes on my love for the piano.

It's not often you get to walk on a lake, but in Minnesota, it's no big deal.

Thinking I need to put the kibash on dual birthday themes. The cakes are getting harder to decorate lol

Can't get this kid to take a nice picture for the life of me these days!

Also, coming up with games that actually entertain 5-7 year olds are becoming more and more difficult. Half the party guests (including the birthday boy) didn't want to play this one. I thought it was pretty cute!

Lessons learned from this party: Make your own pizzas were a great hit for making, but not so much for eating. Also, juice boxes were a huge favorite.

I just love this 7 year old so, so very much! We've had a ROCKY past couple years, and yet he still steps it up and brings so much joy to all of us!

For the record, he wasn't tired ;)

And that's a wrap for January 2019!

Disaster, Big Decisions and Moving Ahead

I've been fairly quiet on here the past few weeks. Truth be told, I haven't been entirely sure what to say. There have certainly been some pretty major happenings, but I've just been really overwhelmed and short on time.

I got a call a few weeks ago from Mark's facility saying that there had been an incident they needed to make me aware of. It was similar to the one I received at the end of October, at which point they had advised me to begin looking elsewhere for him to live. Phone calls like that aren't ones I take lightly, and to be honest, I was really shaken. Thankfully, after that call in October, I had lined things up a bit better, and I had a case worker already on hand to call immediately and have her get working on things. And we had just begun seeing a new Psychiatrist, so I had the staff there to lean on as well for medication adjustments. I was certainly more prepared for a change, as in we had researched facilities and visited a couple anyway, but I still felt blind sighted by the call.

If you aren't a member of the "Mark Johnson FTD Updates" group on Facebook, I'll be honest and say that things make it there that don't make it here (at least not in as timely a manner), but the overall gist is that I was scrambling: Grasping for straws. Freaking out. I had to call Mark's Dad and step-Mom at one point to take two of the kids so I could calm down and have a lower energy in the house.

Mark had been wandering more, stealing more food from the other residents, and when an aide attempted to take candy from him (which...taking food from an FTD patient, in case you weren't sure, is a BAD idea), he pushed them away, and they fell down. Another tenant's family witnessed this, and flew off the handle; understandably.

They were more adamant at this point, using the politically correct terms instead of the kind, compassionate words from back in October. Things like, "We feel we can no longer meet his needs." "Some of the tenants' families are fearful for their safety." They were sticking to the script this time, and with those specific phrases, all those documents I signed when I placed him were ringing in my ears, and I knew this was serious: They were on the verge of giving him the boot. And if I've learned anything from the FTD support groups on Facebook, it was that being kicked out of a facility is NOT a good thing, and it would be EXTREMELY difficult to find alternative placement should he actually be kicked out. Of course, at the point he was at right then, he hadn't actually done anything to warrant that, but there was the fear of what might come. He was now in such a routine of going into other rooms (knowing full well which ones left their doors open with food there) that it'd be REALLY hard to break the habit.

The facility requested 24/7 supervision and redirection, and I scheduled it right away, but then got shell-shocked at the possible $20K/month price tag and opted to stop that within a few days. However, during those few days of 24/7 supervision, we got a call from one of the places that we had toured, and there was a single-room opening! I was elated, and felt, with certainty, that this was God opening a door. And yet, after they reviewed the nursing notes, they said they felt he wouldn't be a good fit for their facility. I think deep down inside, I already knew that, as I recalled the layout, how small the rooms had been, and how busy the halls were, but it still stung, and I fell deeper into despair. The place I WANTED to move him to wouldn't open until the end of March, and I didn't cherish the thought of moving him twice in short order.

I felt some more moments of clarity after talking with the Mankato area Ombudsman for a bit: Why not maybe rent an apartment or house and call in 24/7 care! Of COURSE that's what I do!! And call off the 24/7 supervision, because well, what the heck: They're going to boot him anyway, but I'd have another place for him before then anyway! But that clarity was shattered just the next morning when I realized that taking away the 24/7 supervision could very well mean that he DOES cause an incident that would send him into inpatient placement and shatter any hopes of finding another facility. And on top of that, we were striking out on finding a place that would really accommodate him with a full-time aide very well. The 24/7 in-home care was going to cost almost $12K/month, and then another $700-1000/month in rent, and then paying for food out of pocket (throw in another $1000/month, with the way he had been eating), and we were looking at $14-15K by the time was all said and done. And still, the onus would then be on ME, because at the end of the day, even IF we found a house that would actually work well for him, if he was too much work for the in-home care, they could quit the service and leave me with Mark's responsibility, but now living by himself in an apartment 30-40 miles away. It wasn't going to work. I was feeling so overwhelmed I wasn't sleeping at that point, and had nightmares when I was. And there just isn't a booming housing market for renters within a 40 mile radius of home. The places I looked at simply weren't going to accommodate him and an aide (and actually allow the aide to sleep at ALL at night).

So, I called my case manager back up and said to continue her searches, and I talked to the Ombudsman, and he gave me a couple suggestions. While we are still possibly looking into another facility that IS already open in the Mankato area, as well as another that I am dragging my feet on more on account of it being in the south metro near Minneapolis, my gut kept telling me that this new facility in Mankato was where he should be. So...on Monday, I spoke with the facility director where he is currently, and updated her on the situation, and we agreed that 24/7 supervision was going to be necessary if we decided to hold out for the new place, BUT...that it was extremely likely that with that 24/7 supervision in place, they could keep him there until the new place opened. So...Tuesday morning around 10am, that supervision started back up again. It comes with a hefty price tag, but at this point, knowing that Mark is getting more personalized attention, being kept from too much wandering, and hopefully preventing any incidents in the future.

I got some great news, however, at the end of the day on Tuesday: The staff at his current facility did not feel that they needed that supervision from 10pm-6am, so that cut out an entire 8 hours of each day, saving me approximately $6700/month. So...that's AWESOME!

The new facility opens at the end of March, and currently has only one room of the 20 in memory care filled, which means that as they are opening, they'd have an EXCELLENT staff-to-tenant ratio, which would mean the 24/7 redirection would be a lot easier to manage by the staff alone.

On the upside, if I get the chance to tour the new place in the next week or so, and it ends up being a great fit as well, we could always move him there sooner, and then I'd save a tremendous amount of money by eliminating that 24/7 supervision cost, but I know what I'm facing at least as far as expenses at this point, and what the "worst case scenario" number is, and I can prepare for that with retirement withdrawals.

I feel okay about this plan of action, and although I'm sitting here at 3:20am typing this update (it's what happens when you actually go to bed early, and get a full 6 hours of sleep in before the baby wakes up), I don't feel the immense weight of it all on my shoulders like I had the past couple weeks. I KNOW the Lord is still working in all this. I KNOW He's there: I can feel His presence. He has been teaching me over and over and over again about patience, and then persistence, and then just a whole bunch of waiting again. The waiting part is HARD for me. But I know He has us in the palms of His hands, and He's not about to let us go now.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. ~Isaiah 43:2

Just for good measure, and because I feel like I've taken hardly any pictures this January (and well, also because the rest of this post has no pictures)...here's some sweet Jo-pants smiles from our walk on the frozen lake last weekend ;)

A Little Update; Life as well as Mark

I feel like it has been quite a lengthy time since I've done an update, so I figured it was due time!

I looked at a nursing home a few weeks ago, and also 2 assisted living facilities to keep in mind as backups if things were to go south again where he's currently at. All were lovely, and I'd be content with any of the places if my hand was forced and he had to be elsewhere, but I'm hoping it doesn't come to that. They're all much more expensive than where he is at, BUT...all nicer, and if it's what has to happen, it does, I guess. He has just since last week been more of a handful for them again, even if overall, he's still fairly mellow. We had started a sleep med a couple weeks ago to hopefully help when he was supposed to have a liver ultrasound on January 4th (more about that in a bit), but we're thinking that may actually have been contributing to his increase in petty candy thievery from the other residents causing them to be a little more rattled, and their families again concerned for the safety of their loved ones. On the upside, having these other facilities in the mix now, I know at least we have other options. However, the one I would choose right now actually will end up costing approximately an additional $1200/month and won't be available until March. By March, who knows: He may have declined to the point of needing nursing care, in which case the whole game changes.

We've seen Mark a fair amount lately, between Christmas and appointments, which makes my heart happy! He seems more with it than he has for a while, but he also seems a little more excited than usual, which makes me wonder if he is just adjusting to the meds more, or if he's going through another bit of a decline. I spoke with one of the staff yesterday after dropping him back off after his Psych intake appointment (more about that later), and she told me that she did notice just in the past couple days that he has been wandering a little more, and going into the residents' rooms as well again, so I reminded her that she could give him that additional dosage of the Clonazepam if it was getting to be too much.

The kids and I enjoyed seeing him on the 23rd and showering him with gifts (although his "big" one ended up being a surprise I'll show you in a bit). HIS favorite was a photo book I made of the kids for him, but MY favorite just made me giggle :) I'm hoping it makes some of the staff chuckle too :)

As of December 26th, Mark finally has a Psychiatrist! It has been way too long in the making, honestly. I am SO thrilled to finally be done with intake appointments!! I feel SO much more confident while talking with him than I have with ANY of the other medical staff. He actually took the time to explain the GeneSight results to me and explain a little more how all the different med families interact. (Of course, how much of that I retained is yet to be shown lol) It gave the social worker a really good view of what it's like to take Mark somewhere he doesn't feel like being as well...so.much.wandering.

I had to go stay the night with him on the night of January 3rd in order to keep him from eating for 8 entire hours in the middle of the night. I believe I mentioned before that he had a slew of meds added in from his diagnoses added in for diabetes and high cholesterol. However, he also had abnormal liver enzyme levels, so his primary doctor had ordered to have a liver ultrasound to determine if he also has fatty liver disease. It's a lot all at once, but I can't say that it all surprises me. The weight thing has been a real problem :(

The staying overnight thing really wasn't horrible. He slept from around 10pm until 5am, waking only twice to go looking for food in his apartment, and I had removed it all earlier, and was able to convince him to come back to bed without too terribly much trouble. We both got up around 5:30am and I started getting things together, as I had to load a few things up from his apartment before I needed to leave around 7:45am to get back home in time for my annual appointment. I left with what I thought was 15 minutes to spare before his scheduled 8am ultrasound, and he was sleeping, so I was pretty optimistic. Well...apparently the 8am turned into 8:50am (the director said she told me "between 8-9am", but that's not what I had in my phone from our previous conversation), and in that hour, he ended up eating breakfast as usual at 8:30am, so it threw the ultrasound out of the realm of possibility. I was, honestly, pretty furious when I found out, but have since calmed. It helped to talk to our primary doctor during my annual physical about it, and he posed the question as to why we are actually doing it, since it's not really possible to treat it for him beyond diet and exercise, which isn't feasible given his disease. So basically...I'm trying to focus on the positive here and say at least I got to take care of a few things around his apartment that I'd been needing to do (remove a broken recliner, figure out what was wrong with his CPAP machine, and bring the magazine organizer for his photo books I've been leaving at his place for him to look at.) as well as finally get the sushi I've been thinking about for MONTHS at this point.

I also filled a huge bag worth of snacks that I or the social worker had bought for him that he wasn't eating that could make better use at home, so it was almost like going grocery shopping...and on top of that, since we didn't have to officially stop eating until midnight, we got some pretty yummy snacks to eat while watching "Fuller House" at his place before bed.

Since beginning the diabetes medications about a month ago, he has dropped approximately 8lbs, so that may have been a large contributing factor to amplifying not only his behaviors but also his proclivity to eat. I mean, add his natural inclination as a linebacker-sized guy in general to FTD and the appetite-inducing meds to now adding diabetes, and I can't imagine how hard it must have been for him to regulate his eating.

Still, I'm reeling over the fact that I had to buy Mark ANOTHER chair for his apartment. He is just such a big guy that he was plopping into his chairs and he literally busted the metal piece that holds the footstool in place for the one chair. I'm certainly going to at least attempt to put in a warranty claim for it, because it was DANG expensive, and I just purchased it last March when I was thinking that creating the "man cave" was going to be a thing, so it's less than a year old. Still, that's another "to do" item on my never-ending list.

I think that even though the new chair isn't a recliner, it should hold his weight a little better, as it's a little higher up, so he shouldn't have to fall down into it at all.

I am ever so cautious to open this back up again, but I do believe he's in a place where we would welcome close family and friends for visitors again in very short spurts. He will not be able to leave the facility again without me simply because he is very unpredictable, and I don't feel comfortable with the possibility of him running off. We've had it happen enough to us that I don't really feel comfortable even taking him out with myself and ANY of the kids at this point. We did take him to the Kiwanis Holiday lights on the 23rd, but with his Aunt and Uncle from LeSueur along, and with his Uncle under "Mark duty", which he soon thereafter understood, as Mark has this inkling to just take off, and I can't follow that quickly when the kids are with. His Aunt was able to help me with the kids, which was SO helpful!

Christmas wasn't nearly as depressing as I had been preparing for, honestly. Last year, everything was still pretty chaotic, as Mark was at home, but extremely distant, and I found myself more irritated and angry and hot-tempered than I have ever been around Christmas. I yelled a lot, the kids were all out of sorts, and no one was sleeping well. This year, it was calm, we had a lot of fun, and we just stayed in. Well, mostly, anyway. In fairness, it was a really long break, there was too much electronics time, and we are ALL ready for a break from breaks, I think.

Cashel and I had a whirlwind break from life as we attended one of my very best friends' weddings in Littleton, CO the weekend of New Years. More on that in a different post.

I feel like this is getting REALLY long, and it has taken me WEEKS to write, so I apologize that it is probably a little scatterbrained. I guess that's how it goes as a sleep-deprived Mama to 4, with a toddler baby girl who thinks 3am is time to party the past few weeks. I can't say I'm ever bored, though, so there's that ;)