It’s been 12 years since my mom breathed her last earthly breath. Today felt “off” in a lot of ways and when I finally recognized why I went a lot easier on myself and let my family know too. You can reset the day however many times you need and at any given moment. I’m also going to sleep before 10 on account of the time change so tomorrow me can be ready for the earlier sunrise.
It feels okay to write about what this south star concept means to me now that my dad is in the depths of his dementia and will never read or comprehend these words. This is in no disrespect to either of them I want to make that clear, but theirs was a marriage with a lot of turmoil. It was like two different marriages under one roof. My dad lived in a lot of darkness and depression for the decade after she died and before he got sick. She was the love of his life. Since he got dementia, he still thinks she’s alive, and it really works out better this way for all of us. My mom on the other hand wanted out. She voiced it regularly the last 5 years of her life. She felt stuck and tired and run down from holding up the marriage on her own due to the family disease of alcoholism. My dads raging alcoholism let him live in a fantasy world where everything was perfect, while she lived much of her life in misery – overworking to pay the always late bills, keeping the household afloat, martyring herself to the cause until it literally killed her.
I’ve forgiven them both in so many ways. And the biggest one is using their example as my south star. Whenever there is something out of harmony or reminiscent of my childhood growing up in an alcoholic home I don’t have to go resolve it using that same old beaten path. I can chart a new one and try something different. I can use any number tools that 12 step work has given me. I always have options and people to support me. I don’t have to do the same thing over and over again and expect different results (that’s the definition of insanity).
Don’t like a yelling house? Don’t yell and instead take your anger outside into nature. I screamed at the sky today and my throat still hurts. Don’t like passive aggressive behavior? Stand up to it and call it out for what it is in the moment. Ask for clarification and demand rigorous honesty. Be transparent with your kids about serious topics like money, sex, and addictions. Tell them where you’ve struggled and why. I didn’t get a North Star growing up but that doesn’t mean the next generation has to repeat the same traumas I experienced.
Gosh I miss my mom with such a huge part of my heart, but I wouldn’t have learned nearly all that I have in her absence. Her death pushed me to seek out healthy relationships with so many wonderful lifelong women friends and mentors that I know I wouldn’t have dared seeking out had she not died. I wouldn’t have the life I have today if she was still here, resentful and bitter. She loved a lot of things in her life earth-side, us kids above all else, being a grandma even if only for a short while, God, and even my dad despite his addiction. I don’t know how much she loved herself though, and that is another south star. Loving myself means I have love to offer others without reservation or judgement. She was a good example in modeling a Christ like love and for that I am grateful. Grief can me mixed and messy and this is what that powerful loss means to me 12 years later
One of the hardest of recent memory. I moved my dad again today, not because I wanted to or even had a choice. His facility in Payson sent an eviction notice a couple weeks ago, apparently they and Medicaid can’t get their $hit together to facilitate payment smoothly. The house manager, Chris had called me repeatedly asking what I could do about it and my answer has consistently been a big ole nothing. I mean I’m doing our part, paying into Medicaid via my dad’s spend down and paying the facility agreed upon lower rent that Medicaid is then supposed to cover the difference. My dad was evicted because he is poor. Plain and simple.
We have a Medicaid case manager that I’ve been in touch with through all of this. She asked me a couple weeks ago coinciding with the eviction notice if I would be willing to move my dad out of Orchard View and into a facility that was easier to work with. I said yes and let her steer. She found the new place, booked a mover, discussed the new agreements and kept me well informed. She also told me that Chris had been verbally abusive to her so she was no longer communicating with him or Orchard View (OV). So I had some trepidation about retrieving my dad from there this morning.
When we got to OV this morning (we being the kids and I thanks to a random Monday off school) there was a palatable feeling of sadness amongst my dad’s care staff. Chris had excuses for his behavior, but I don’t buy it and maybe he’ll sue us but there’s literally nothing I can do to make up for what my dad couldn’t afford to pay while we waited and waited on Medicaid, don’t ever get old with no financial security it’s truly a nightmare and had my dad not had an advocate he’d likely be living on the streets.
Back to the main event though…There was lots of holding hands and comfort and some tears. He really does make an impact once people spend a good measure of time with him. He was also in a great mood, at one point of complete lucidity he said, “Let’s go back to Colorado”. This broke my heart wide open. This man rarely acknowledges that we’re even in a different state when we get him for outings despite all the Utah license plates, the landscape confusion and an interstate he’s unfamiliar with. I think maybe he was anticipating a drive today and maybe the long road trip we took when we first moved him to Utah just over a year ago. This is all conjecture, as his next sentence was, “I loved that song.” So who really knows.
So we get to his new facility with some of his things, still waiting to hear from the movers for his furniture. They’re surprised we’re there and aside from the vacant room are not aware that today was move in day…great. They let us unload and say to wait for Mikayla to come back from lunch. We unload while my dad sits and waits in unfamiliar surroundings, and waiting is just about the worst for him as it begins to get him agitated. I decide to run to the store with him for a few needed items and to break up the waiting. As the kids and I are grabbing our late lunch I get a call from the new facility’s owner asking all the questions and wondering when we planned on moving in. I said we were halfway moved in already and today would be great, in fact you’re our only option at this point. So we hurry back to the new place, meet Mikayla, sign a load of new paperwork, hand over a large check, all with my dad waiting once again, getting up to pace around a few times and having his mood sour further. When it came time for us to leave the movers still hadn’t been in touch, we were running late for a parent teacher conference back home, and dad was coming unraveled. He asked why we had to leave, could he come with me, why did he have to stay there, nobody was going to care for him. All of it and all of the guilt. I made our exit quick instead of lingering since any answer I was giving at this point was only making him more agitated.
The first thing I did when I got back in my car was call the movers, they were indeed still planning on today, their morning job was much longer than originally anticipated. Fortunately their dispatch called me several more times through the evening to let me know their progress. I think things finally got delivered by about 8pm. Good thing dad rarely goes to bed early. Megan, our Medicaid coordinator touched base while I was on my evening walk and I think is genuinely looking out for dad’s best interest. It’s going to be a rough few weeks adjusting to the new place if past experience has anything to teach us. I’m completely emotionally exhausted, am super grateful for my kid’s help with the physical parts, and at a loss for yet another example of a broken system failing us. It shouldn’t be this way. Yet here we are, the hard day is over and we get a new day tomorrow hopefully with far fewer obstacles.
I have this huge modern age aversion to organizing my photos. I’ll do it, but my back has to up against the wall, whether pictures are busting out of their development envelopes like in the good old days of film, or in this case, my iCloud is full and I need to backup or pay for larger storage. I loathe this task. The last time I did it was in 2018 if that is any indication of my aversion. I have 8000 photos from the last 5 years that need (and indeed have) a home to land in that is not cloud based.
This task brings up all kinds of existential questions for me. What if I put these pictures on my external hard drive and no one ever looks at them, again? I went through the majority of my parent’s photo albums when we were clearing out their house in 2021 and honestly, most of the albums ended up in the trash. My dad took a lot of photos on long work trips of the process of putting up electrical lines across the western U.S. After looking at so many, you get the idea of what was involved and don’t need to sift through the whole box to discover any more. It was a core memory for him though and when we drove across Colorado and moved him to Utah, he was actively reminiscing about that process and I had no doubt that even given his decreased mental state, he did play a part in electrifying that portion of I-70. Obviously it held meaning for him, but what of our future generations will a box full of the same photos of strangers and heavy equipment mean to anyone else? Maybe being a nomad for so long made me less sentimental about holding onto things. Clearing out their house did the same for me. But life captured on a phone is somehow different in my brain.
So now I’m cataloguing our photos of the long traveling journey and some of the time before that up until present day, I’m not going to make physical albums or hang photos everywhere like I have done in the past. They were memories made and reminders of fun times had, but I documented the journey right here in this blog and on social media, I got what I needed out of it, it’s time to free up the space on my phone to make space for new moments that call for documentation. For someone like me who needs those visual cues of what I was doing in September of 2020 for example, removing pictures from my phone feels like I’m erasing my memory. Same goes for emails and texts but those have to be archived or deleted as well. For someone whose family member has dementia this feels very sensitive and tender and if I put that memory somewhere else, will I ever go to access it again? What if I forget?
I was talking about this whole photo conundrum with a neighbor a few months ago, how when we were growing up our parents took photos 12 or 24 at a time over a span of several months or a year. They were documenting the really special moments or highlights of a trip. They’d come home and get the film developed and put the pictures in an album or a box, this didn’t even happen all the time. Sometimes the film never even made it to the developer. My family didn’t have videos or need to be archivists to document family life. Once a year portrait studios were more my mom’s jam. In my own little family Natalie was born on the end of the film era, so she has several albums I put together when I was more diligent and less over documenting of her early years. Camden came in 2010, well into the digital age, and he has maybe one or two physical albums to take into adulthood, the rest of his early years are on CDs that where can you even go to look at anymore, or on Facebook which will that even be relevant to look at in his future. It’s so strange how quickly everything changed once we all had cellphones and the ability to take millions of photos and videos of every little thing.
80’s me with mom and sis
I guess in summary I’m realizing I need to treat my unused photos a little more blasé and with a little more detachment. They are not the be-all-end-all part of an experience, like if I didn’t take the picture did it even happen? Yes, I get enjoyment out of the process of documenting, but if the archival process is going to be such and arduous chore, maybe I can edit a little more along the way and not go five more years ignoring, dancing around, and subverting this notice…
The wheels fell off this week (File this title in something I never thought I’d text my kids)The scene of the slime
I pride myself on running a pretty tight ship around here. Not in a controlling or dominating way, but since I have the idle hours that I mentioned in one of my recent posts, some of those hours are used to keep it tidy and running smoothly. I like it that way and clean and organized helps to keep my mind in a good place too. This week the wheels fell off. Sorry for the mixed metaphors, some of my recovery friends use this term, I think I discovered my new term for when this happens: the watermelon has turned to slime.
Let’s back up to moving my dad. A couple weekends ago we trekked back to Denver to pack up his things and bring him to an assisted living facility in Utah. The road trip part of the move went far better than we could have expected. Even with a very very long driving day, unanticipated longer than usual stops because charging an EV in the extreme heat takes awhile. We’d get out, eat something, walk around, then get back on the road. He remembered so many landmarks along the way despite his dementia and probably more than a decade between him and the last time he ventured this far west. He didn’t seem to want the driving to end and the rest of us were far more exhausted than he was that day. I was informed that he slept really well that first night, like 12 hours of uninterrupted sleep. Amazing. So far, so good, so great actually. Maybe he’d adjust well to these new surroundings.
EV explanations That’s a lot of drugsWelcome home dad
The following weekend we grabbed dad out for much of Saturday afternoon, we brought him to our house to explore and relax, an easy, mundane visit really, but things shifted as soon as we took him back to his new home. And I’m learning what his limits are, which is good for future planning. We got him back around 4:30 pm and he was fatigued and agitated, sundowning as it’s known in the memory care world. A visible shift from easy going and laughter to anger, confusion, and sadness. I gently explained that this was his home, I’d come back to see him in another few days, and even though he was upset he seemed to get to a place of acceptance I was able to leave mostly guilt free. This is akin to leaving your crying toddler at daycare and trusting that the overflow of emotion will only last a minute or two as you the parent drive off sobbing. Transitions are hard, and at certain parts of the day for him should be avoided.
A few days later I got a call that dad had tried to leave. He explained to the house staff that he was walking down to the store to buy cigarettes. He made it as far as the park a block away. This is the boundary we are exploring in this assisted living setting. His former home was a locked unit, so the temptation to leave didn’t exist. Here, the population of residents is mixed and folks can come and go as they please. I love that he can be outside as much as he would like to be, each time I go to visit him he’s sitting or snoozing peacefully on the front porch. Outside is good for all of us, I wish more places for the aging had the capacity to let their residents be outside for at least a little bit each day.
Two nights ago, the exploring became a little more fraught. I got a call a little before 6pm, dad had wandered off, did they want me to call the police or look for him for a few minutes first?. I said look first, and not five minutes later got another call that he had been located (in the park again), but was now refusing to get of the staff member’s car and was threatening to get violent. I offered to drive down to help get him deescalated since I likely have more sway with him than the people still just getting to know him. By the time I arrived about 40 minutes later, he had indeed exited the car but refused to go back in the house. Similar to the late afternoon drop off/transition last weekend, his haunches were up and he was quite agitated. But this dad is the one I remember from my childhood, alcohol had made him unpredictable and angry like this lots of times, there’s no reasoning with anyone in that kind of state, so instead of fighting him about going in I offered to take him for a car ride.
We cruised Main Street, grabbed him a Big Mac at McDonald’s, I stumbled upon a smoothie shop for something for myself, and very suddenly his mood started to visibly shift. I offered going back to his new home, and while he stated very clearly he wasn’t going back there, his tone was more matter of fact than angrily felt. I offered to buy him some (non alcoholic) beer and watch something on tv with him (this was his nightly ritual pre-dementia after all). He acquiesced and settling him back into the house was easy from there.
The evolution of a mood
Yesterday I returned to visit during the early part of the day, took him out to lunch, and we have plans to bring him on an outing tomorrow earlier in the day now that we know better when he’s more available and less likely to become agitated. Now I get to balance the dog’s incredible separation anxiety with the human needs around me, but that’s a different issue altogether.
While I’m so grateful to be available to my dad like this, it takes a huge emotional and physical toll. Maybe that’s what my idle time has been for, for storing up some reserves so that I have the capacity to jump into action when the situation arises. It seems I have infinite patience for him and immediately know what to do when things like this happen. I don’t get panicked, even if told they don’t know where he’s at momentarily. But yesterday afternoon and much of today have been spent recuperating from the whole ordeal. I have to keep coming back to me and my needs or I’ll quickly get lost in what everyone else needs around me, yes even the dog (hello recovering codependent).
Back to the melted watermelon though. I woke up today to a mysterious liquid on the counter and traced it to a watermelon I had cut half of earlier in the week and then neglected to finish cutting a day or two later. I looked around and yes, Zach and the kids do a fine job at tidying up, making their own meals, etc. but it’s the little jobs like finishing cutting the watermelon that get overlooked. There’s a give and take, a balance, a dance we all do around my dad’s caretaking that does and will continue to shift and shape how we do things around the homestead and where and when we each contribute. A fellow sandwich mom (the generation of caregivers that are sandwiched between still raising kids while their parents age and need more help) that I follow on socials summed it up pretty succinctly, my kids may not need me the way they once did and it’s in different hours now. They have emotional needs that they didn’t before, and same goes for my dad. So I keep different business hours so to speak. And in all that I’m grateful once again for the time and space to come back to me and this place and get the wheels back on, or the slime mopped up or insert your preferred metaphors here.
The Writings of Breanne Mashek 