Tomorrow marks two full years that Mark has been in Assisted Living. Two years since
Moving Day. Two. Years.
I'm flooded with emotions, but struggling to find tears today. I cannot even begin to detail the changes in all areas of our lives since that point. I look at pictures from that day, and it blows my mind just how different Mark is now: How much he has declined.
Leading up to this day, I had spent weeks trying to figure out what to do with him during the days. He wasn't able to stay at home by himself safely anymore, but full-time care during the day would cost me $12K/month, and it'd be just as expensive to hire live-in help to the same cost. I had tried adult daycare in Mountain Lake, but I was burning out trying to squeeze that into my already insane mornings, and he didn't want to go. I got him to go on the bus all of twice before he refused. Watching the bus come to get my husband to go to adult daycare is an image I won't soon forget.
When I placed Mark, he was very solidly in about stage 2 of the disease, and at this point, he is solidly in stage 4, just one check mark away from having every single end stage sign: rapid weight loss. I called in a hospice evaluation yesterday. In some ways, that is just unbelievable, that it has progressed so quickly. In other ways, it feels like it has been dragging on for an eternity.
I wish Vancouver was within grasp again. I feel like I'm back at this place where I need to escape for a while, to read, to think, to journal more. To plan. To redesign life.
I remember that drive home from leaving Mark there and thinking to myself how that trip to Vancouver would really symbolize change: Freedom from being his full-time caregiver. Freedom from that responsibility. Freedom from the devastation. Truthfully, it WAS that for me. But now? Now I feel like there's another wave that I need to process.
I feel like the past two years have left me facing a learning curve. Prior to Mark's placement, it was a learning curve about how to advocate for a diagnosis for him. It was a learning curve about who to call, how to connect the dots, and how to pursue placement for him.
After placement, the past two years have been a very different learning curve. After I left Mark in Mankato that day, I began almost immediately learning about the ins and outs of supporting and visiting someone in assisted living. I learned about the true costs, emotionally, time-wise, spiritually, financially, and physically, of this disease. I learned the do's and don'ts of med adjustments, and I learned that yes, the likelihood of someone with bvFTD needing 1:1 aides is very real. I learned that financial security is a farce, and I learned that absolutely nothing comes for "free". I learned that PTSD isn't just something that comes from a major pinpointed event, but rather that it can be triggered by the ring of your cellphone and seeing the facility name pop up. I learned that a huge amount of elderly people who planned their whole lives for a grand retirement end up spending all that money so they can die in a safe place where they are cared for.
I learned that $300,000 may not be enough to afford 3 years in a safe place when you have bvFTD and have to place your spouse and they require 1:1 aides indefinitely. I learned that you cannot assume that he is getting the correct dosages of meds, or that you can trust that he is being cared for properly. I learned that it's advisable to visit without announcing that you're coming, not only to ease Mark's agitation and exit-seeking behaviors, but also to ensure that the picture they're painting on those Saturday mornings that they were expecting visitors isn't just a once-a-week clean up while the rest of the week its left in disarray. I've learned that you cannot assume that anyone is actually doing what they're being paid to do. I learned that while I may be paying an absolute FORTUNE each month, the reality is that the workers I'm paying for aren't getting paid anywhere even remotely near what I'm paying for them to be there. Fortunately, for our situation, Mark is and has been well cared for, but that isn't always the case, and it takes a lot of research and digging to figure out what you need to know.
I've had to learn that I have to separate Mark's care and advocacy from my emotions. I've had to learn that while there are certainly people working at these facilities are only there for a paycheck, there are a LOT of them who really, truly get attached to and love the residents. I've had to learn who I can trust, and who I can't, and to be very specific about my questions to get the true picture. I've had to learn what to tell a facility up front to help them understand better what they are dealing with, and how to best manage it. I've also learned that when people say they're "familiar" with frontal lobe dementia, that doesn't mean they have any idea how to care for someone who has it. I've learned that there are times when more information is better and others when the bare minimum is all they need to know. I've learned that an Assisted Living facility CAN "kick" a resident out (albeit with fair notice), but Nursing Homes cannot. I've learned at what point I've had to completely limit his visitors and also when I had to stop taking him out for drives.
I've learned that there is no "right" answer for a heck of a lot of scenarios, and that things that I've always felt are black and white are a million shades of gray: When there are only bad choices, it's not easy to ever feel like I made the "right" bad choice. I've learned that the terms for "We're about to lose our minds and are ready to kick him out" sound more like, "We can no longer meet his needs."
I learned that pretty much the only benefit to having saved a ton of money for retirement is that you get to choose where you want to move when you have to be in assisted living or a nursing home. If Mark didn't have this retirement savings, basically, he'd have to be in Minneapolis at the closest, because no one else would take him. Having money to pay for it meant we could keep him an hour and a half closer than that, and also that we could provide the 1:1 aides he needed to keep him there.
I've learned that spending down is great in theory, but that no matter what happens, when Mark dies, the government is going to want to take every dime they spent on his care back. I've learned that knowledge is power, and that knowing what your options are takes away anxiety. I've learned the value of a good elder care attorney, and a solid power of attorney.
While two years ago, I was absolutely floored that I was going to begin spending $4200/month for Mark's care, right now, I'm on the cusp of having to start really buckling down, stopping all the renovations, and living in a world where what comes in is all I have, and the padding of retirement savings no longer exists. That absolutely blows my mind, as when I was going into this whole thing, I thought I had 10 YEARS worth of expenses in his retirement savings. With 1:1 aides required 16 hours a day, that ten years turned into two and a half.
I'm looking forward to the place where I'm not dealing with tens of thousands of dollars every month coming in and going out. I'm looking forward to just be dealing with a normal budget and normal expenses for a family of 5 (whatever that means). I mean, obviously for everyone in life, there are going to be unexpected expenses and changes (that's what an emergency fund is for), but typically those expenses don't become regularly four times what your salary is each month, because at some point, insurance kicks in and covers the rest.
I have to admit that it will be refreshing to finally be in a place where I'm living like a "normal" widow in her late 30s, simply grieving, and not grieving on top of managing his care from afar. A "normal" widow, picking up the pieces, working and caring for her kids. A "normal" widow, who can check that box on forms for her kids' daycare or school, instead of checking "married" but then having to clarify "But he is terminally ill and lives in a secure memory care facility in Mankato". It'd be easier to just check that "widow" box, because people don't understand the whole gradual loss aspect of it, but they DO understand the enormity of the word "widow".
I know it's still a little ways off, and under no circumstances do I mean that I
want to be a widow at 38, but I sometimes wonder what it will be like when I no longer have the stress and strain and guilt of it all on my shoulders anymore, and I can just simply grieve without being reminded that he's "still alive" and that I can "still visit him" and that I should embrace it all. Well...I can't. I can't even visit him, for crying out loud. I haven't seen his face aside from random video chats in three months.
One really incredible byproduct of this whole thing is watching the kids really grow together. Watching Cashel and Kendrick really embrace this whole big brother thing, and not only still really love on their Daddy, but also to come alongside their little siblings has brought me immeasurable joy and peace. So much of this single parenting stuff is so, so lonely, and I feel like I'm the only one enforcing the rules and it's exhausting. So to watch Cashel and Kendrick come alongside and enforce even just the safety things, or to repeat the things I say about Daddy or about our home rules, it's refreshing. Mark was always so great at backing me up with the kids, and some of the most difficult parts of parenting is when I grow too weary to be consistent. It appears that repeating myself 7 billion times in the course of their lives so far is beginning to pay off ;)
It's a very difficult place for all of us to be, when the kids are looking to me for answers about what the future holds, and I don't have answers for them. But to see them reassure and encourage the little ones even while they don't have a clue themselves, it's heart-warming. What they've heard me say is, "I don't know, but God does, and we just will continue to trust that he has a plan in all of it, and he will guide us", and although I'd rather they communicate that to the little ones, it's more along the lines of, "Mama will take care of us, and it'll be okay". Jesus and Mama, right? I'm just so glad that the kids feel that settled. I've noticed it for sure - this whole slow calming for all of us. It has been present for the past year for sure, but on a deeper level at this point.
Two years into this, it's not any less devastating, but I'm no longer fearful of what's to come; I'm just really, really sad. My thoughts have changed from being fearful of what will happen to Mark to knowing that he will continue to decline and eventually leave this earth. I can do nothing aside from hope and pray that as Mark continues to decline in his earthly body, he is not in pain and suffering, but that he will be able to pass from this Earth into the arms of our heavenly father and become whole again. Knowing that this will come and processing it and accepting it gives me peace. I'm not afraid of it, but slowly working to prepare for it.
His funeral arrangements are already in place and paid for. I've got a solid start on a slideshow (SO much filtering is ahead, as the thing would be 3 hours long at this point). I need to get started on a Eulogy before too much longer, but I'm finding it extremely therapeutic to prepare; to think ahead. Saying it out loud that I'm preparing for my husband's funeral is sadder to me than the work of actually preparing for it.
I remember my last visit with my Mama before she passed away in October of 2017 after she spent a decade battling Parkinson's disease. She looked so scared, so stressed, so anxious; terrified almost. I used to come home from college on the weekends and give her neck rubs for hours while we sat and talked, and that tension followed through right up until the end of her battle. But even in the turmoil and chaos surrounding her funeral, what with Mark's rapid decline and extreme agitation with so many people around, I vividly remember looking at my Mama's face as she lay in the casket there, and I remarked to my sister how at ease her face looked; the anxiety completely washed away. I think even with the immense recognition of loss in that moment, I felt more joy that I had in years at the thought that she was free from all her anxiety and pain, and she was whole.
I think about that moment often as Mark slowly declines towards the end as well, and I wish that for him so badly. Because in that moment with my Mom, what I realized was that this life and death really isn't about us at all. Knowing that it will bring him wholeness and peace when he is constantly in a state of confusion and anxiety brings me joy and relief. Losing him brings such inexplicable emotions that have and will continue to impact me the rest of my life. However, his suffering leaves us in a constant state of turmoil as it does him, and from that pain on both our parts, we're ready to be done with that suffering.
Two years ago, I'm not really sure where I would have expected us to be at this point in time: A year ago, I never would have foreseen that Mark would still be with us. One thing is for certain, however, and that is that the Lord knows the exact millisecond in which Mark will take his last breath, as he does with all of us, and until that exact millisecond, there is nothing we can do to change that. So for now, we just continue to love him and provide for him, and leave the rest to God.
Hats off to this years' seniors. This year is my TWENTY YEAR reunion (that we probably won't even be able to celebrate with this whole virus and stuff). TWENTY. Dang. That makes me feel super old. To be honest, I was never really a big fan of high school, so even if there was a reunion, I'm not sure I'd go, mainly on account of it being TWENTY years ago, and me forgetting who people are lol BUT...here is senior Amy, class of 2000! Isn't that Union Bay shirt just HOT?! lol Oh, and my hair! It's like I hadn't ever heard of layering or something - eeek! Oh, and in case it wasn't evident, I was "SO FAT" here lol
One of my very favorite memories from our Alaska trip was going halibut fishing. This picture depicts EXACTLY how I feel about touching fish. lol So if anyone wants to take my boys fishing, you let me know lol I love catching them, but am SO squeamish about touching them.
From our 7th Anniversary in Duluth! Mark went all out this year and got us a beautiful suite right down in Canal Park and these gorgeous flowers! We had Cashel with us on this trip, but even with the demands of a baby, it was one of my very favorite trips! It was a GORGEOUS weekend! A week after this trip was when Mark's Dad had his bad farm accident, and I remember that when he finally "came to" a couple weeks later, his first question to us was, "How was your trip to Duluth? When did you guys get back?"
Baby Kendrick gives me all the feels ♥
I'm not really sure where this whole thing started, but somehow this bottle of Manischewitz keeps getting passed along at our family white elephant gift exchange at Christmas lol
Pumpkin carving with my babies circa 2018 ♥
I ADORE watching my kids explore. It's one of my very favorite things in life ♥
My favorite memories from some pretty dark days were the piles of sleeping kids on my lap most days ❤️
I will miss watching this guy play softball. He was so hot in those softball pants, and such a powerhouse hitter. ❤️
My paternal grandparents used to always come out to celebrate my birthday every year. They've both been gone for over two decades, but the memories are so fun ❤️
Ryan and my Mama visiting, summer 2016❤️
A few days before Ryan was born, Mark finally figured out where the onion rings from this restaurant in Worthington ended up going, and he took me on a date to have some. Ummm..... 😳
Christmas morning 2014 - baby Kendrick 🥰
Squishy little Cashel on our trip to Washington State when he was 8 weeks old 🥰
I hope you enjoyed my happy...my cute ❤️
I love my happy, happy mug!
