aging family

Grief and My (Longest) Season of Uncertainty

It’s been almost one year since my dad got sick with encephalitis and subsequently was diagnosed with dementia. One year since coming back to Denver for the first time and putting our lives, goals, and dreams on hold. One year of survival, mental breakdowns, experiencing some of the deepest levels of anxiety and depression, churning family dynamics, grief, housing insecurity, and complete uncertainty.

Yes, it’s been a destabilizing year for most of us, but when I put my losses into words I can see their magnitude and feel the full weight of it all. I put this post down and pick it up again weeks apart because it’s hard to look at. Maybe you’ve lost some things too, welcome. There is space for all of us to hold each other’s grief.

I didn’t want to quantify my grief this way, but it was a suggestion from my sponsor. See, grief and I have this tricky past, culminating with the loss of my mom over ten years ago. When I went into that depression I had very few tools or knowledge of how to get out. The trauma of that experience has made it hard for me to want to get reacquainted with grief this time around. Like I mentioned in my last post, I’ve been reading a lot of sad memoirs and I think it’s a way for me to get adjacent to grief without going to the deep end.

I think I’m done camping out adjacent to and am finally able to dive into my own grief experience. (Also, if you’re not into this sort of sad stuff or if it triggers you in any way, skip past this post – I promise I’ll eventually get back happier times in my writing, this too shall pass)

So in no particular order, here are my Covid losses:

Community, leaving Denver by choice but then getting stuck in this sort of nomad hell with no lifeline or way out. Loss of income about six months ago that complicated things immensely and made our lives get really small. It’s dehumanizing and demoralizing. It makes people uncomfortable so my community got smaller.

Loss of a dream, a life in Guatemala, other dreams on hold, loss of the capacity to dream because sometimes that is just too tiring to think of. Loss of creative energy or the ability to “figure it out” on the fly like I once did.

Loss of a business and a business partner, I did not get a say in this matter and that still stings a lot.

Loss of a parent. Yes my dad is still here and I am making the best of it, no I can’t call him up and say what I sometimes need to say to my father. I’ve gained a toddler in some respects with regard to his mental capacity. (Fun AND challenging)

Loss of autonomy. Choices got whittled down, decisions were made from a perspective of loss and lack. While I’m so grateful to have the closest circle to fall on and hold me back up, I also want to be able to make my own decisions again, have my own space again, sleep in my own bed again, do things my quirky way without needing an explanation.

Loss of sanity, security, health, stress weight and hair, I’m putting it all down so yeah, hair gets listed too.

This is another one of those posts that can’t get wrapped up with a bow. Grief is messy, unfolding, sometimes all encompassing. I will say that I’m getting a lot of support from the following; therapy, being outside and walking everyday (even when it’s dark and cold and I don’t want to), from daily CBD use, from moving my body with Pilates and with toddlers (real ones, not my dad), drinking water, making dinner, and asking for what I need from my people. I’m not done with my grief, but saying it out loud and sharing it like this helps me move through it, explore it in a less scary way. Thanks for coming along with me.

Some of my sad reads for the year so far. Maybe I’ll pick up some light fiction in the coming months…

Family Caregiving

Still smiling even without front teeth

I have developed a longing to do some deeper work with regard to care for my father since dementia has so quickly sapped away his memory. He probably won’t always remember us, yet we are away. I’m jealous that his memory care facility is getting the best parts of him right now as he is generally quite jolly, helpful, easily makes friends, and is very affectionate. This is not the same dad I had, especially the last decade or so since mom died. I knew his love was there, have always known that, but it was marred by addiction and the narcissistic personality that centers their own doom on all the things that happened to them and doesn’t take responsibility for any part they may have had to play in that. I stayed away for most of the last decade out of a means of self preservation and while seeking recovery. That means my kids never really got to know their papa, aside from stories, and now he doesn’t know who they are. (We did have a big family lunch last time we were all together and my kids remarked, “Wow, Papa is funny, he was never like that before.”)

I miss my dad and will ferociously fight for his needs now until he dies, but I wish there was a way to do what we’re doing closer to him or with his participation, I know he would love the hands on work and outside nature of our living situation, but I also know the burden this would create wherever we went because he would require near constant supervision and, admittedly it’s not exactly the most stable environment.

I was recently accepted into a fellowship around caring that meets weekly for the next six months, we talk about all of these issues and more from the perspectives of caregivers, people receiving care, activists, and more. Caringacross.org

It’s giving me greater insight into this journey as well as much needed camaraderie. There are so many people involved in care everywhere in our country, but we do caregiving in a bubble, often feeling isolated and devoid of resources. A perfectly good example where I saw this play out was in selecting my dad’s future home. (as referenced here) https://breannemashek.com/2021/05/11/well-i-hit-the-wall/

Never did the option of care at home or care given by a family member come up, definitely not by the VA who wanted dad in a more institutional environment, so we sold dad’s house and moved on. How else would we pay the thousands a month required for his care? But what if he could indeed receive care from one of his family members? What if that caregiving paid a living wage and the role was truly valued by society as a whole? I saw this in the courts too, where it was assumed a family member would sign up to voluntarily become a conservator and guardian with very little knowledge of the time and expenditure of resources to muddle through the whole process. Yet, if a family member wasn’t willing, they’d gladly appoint someone to you that you would then pay. So many of our systems are so broken, and this is addressing just a small cross section of America highlighting those deficits.

I feel like we’re in a phase of this journey where yes, we are all fed and are functioning well, but it’s still not ideal and nobody is getting what is the best for themselves. The caregiving role is a full time endeavor, where emergencies pop up all of the time and dad’s care takes precedence. Just this week we had to go to the VA for a tooth infection followed by having four teeth extracted. This is all out of pocket and out of our convenience until he qualifies for Medicaid. What if we hadn’t had a return to Denver trip already planned? His neglect for his care over much of his life is suddenly my emergency and there’s no passing the dime on to someone else to handle it. I could just talk circles around it all day. The intersections of care, poverty, lack of organized support, dysfunctional systems, how this disproportionately affects women and people of color, all of it. I’ll probably need some therapy once we’re out of the weeds and more stable, but for now I’ll keep writing to chronicle the journey and shed more light on our reality.

Fueled by a pot of coffee every day
Some of the men at Applewood Arvada

We’re still waiting, so let’s make some new memories.

street sign is a mood

I’ve laughed at myself a lot as these weeks have slowly turned into months and I’ve fought this unfair marching on of time almost the entire way. The latest came early last week when after having a favorable hearing for permanent Guardianship and Conservatorship over my dad on the 24th, I thought we’d get written orders from the court by week’s end, maybe this week at the latest. Once we have orders we can finally move forward with closing on the house, we can also get all of my dad’s outstanding bills paid, and make plans for all of our next chapters. Wouldn’t you know it, the magistrate took the week off, so yet another week setback. 🤣🤣🤣 (if I don’t laugh about it I cry, so this is better.)

So after all of the resisting and whining, I decided to finally surrender. It’s been a slow surrender as I’ve realized how dug in I was with my plan of only wanting to be back in Colorado for two months (I know, how cute and naïve of me). Surrender has looked like giving ourselves mountain breaks for two weeks in a row, (despite the guilt that I’ll likely always carry anytime we go anywhere forever now, especially when dad’s care facility is calling me as we head out of service).

Back to the mountains for some camping on my sweet friend Betsy’s land

Surrender also looks like soul filling convos with friends, impromptu drop ins, celebrating G-Pa’s 70th birthday with family we haven’t seen in over a year, random errands to look for bus inspiration, planting flowers and veggies at the memory care facility and tending to our tiny plants. We may as well settle in and make new memories here while we can. The timeframe will play out as it is supposed to, and there is absolutely nothing I can do in my power to move that along. There’s a lightness and levity in surrender. There’s clarity in stepping back, not trying to force solutions, there’s laughter and love to be shared in the here and now. Just like always. Now is all we have, having a dad with dementia shows me that in every conversation or moment shared with him. I have a choice in how I want to spend my now. Do I do it with anger and fear or with ease and serenity? When it’s posed that way the choice seems very clear to me. Let me remember this next time I slip back into trying to control any situation.

Loving our extended time as a family after a year of being cautious and apart
No home garden? No problem. (My dad never would have done this at is own house)
  • Tiny plants getting some love
  • Happy wherever they go
  • Most nights end like this along some segment of the South Platte River. Making the best of our surroundings.

The long, slow road of patience

Very few of us are actually good a being patient. We live in a society that demands instant results and impulsive decisions, “do now think later”. When you’re someone who bucks up against that trend you’re seen as weird, lazy, unmotivated (mostly negative connotations). I definitely go through periods of struggling with being patient, especially in this long season of waiting, but I know it’s the right thing. I’ve never been one to ask for more patience because the universe/God/higher power will always deliver on that by way of introducing all sorts of obstacles from standing in long lines of at the grocery store to getting stuck in random traffic. So when we had to make the decision to return to Denver, we absurdly out a time stamp on our stay here at two months. (Cute right?). It was really a self imposed deadline to get things done and not get stuck, which works for my motivation, but when unforeseen circumstances hold things up really tests my patience.

And that’s where things remain as I write this week. I have a final hearing for Guardianship and Conservatorship over my dad on Monday, where I’m hoping for some closure on this phase of things and for the sale of his house to be approved by the court. After that we will be able to shift a little bit of the balance back to our plans and livelihood. In the meantime we’re doing a lot of walking to stay sane, visiting family and friends, and some initial build work on the bus. (Still trying to find the friendliest avenue to document this project, open to your suggestions.)

Fully vaxxed and Visiting dad OUTSIDE where we soaked up some 🌞 and talked endlessly about George Strait

In the meantime of this homecoming, some big changes have happened with my business partnership, formerly known as Kinship Market. Since sales have been almost nonexistent for over a year and this business was only in its baby stages (and therefore not self sustaining), it was decided that we’d part ways and dissolve the partnership. In its place, the name Kinship Experiment popped into my mind as a placeholder for whatever the next chapter may look like in my entrepreneurial journey. This is just another area or example where I’m being patient to see what unfolds. I know I still want to continue amplifying my Guatemalan friend’s businesses and artistry, but I also want to expand into discussion of a holistic lifestyle around sustainability, responsible reuse, living in a smaller footprint, and so on. So be on the lookout for posts regarding a range of topics now, and more about lifestyle and more vs. just products to buy.

So much more to share about this messy transition time, but it’s sunny and a perfect spring day and it’s time to get outdoors to fully enjoy!

Well, I hit the wall

It has still been an action-packed few weeks. Dad finally got placed in a memory care facility on April 30. Zach and I drove him there from the VA in one of the hardest emotional days yet in this crash course journey with dementia. I had to advocate hard with the VA that this would be an appropriate level of care for him vs. a nursing home setting where they wanted to see him go. It’s been 10 days and it’s been an adjustment but mostly good. He calls from the house phone at the facility with strange requests ranging from “come pick me up from ‘work’ right now,” to asking about his cell phone (a flip phone) and letting me know he has a buyer for it can he get the number. The siblings and I take turns going to see him as the pandemic still dictates how often, how many, and how long visitors can be at the facility. It was a huge relief getting him placed but on the heels of that relief we ran into a hiccup with the house.

Back in February before any of this happened, my dad quitclaim deeded the house over to my brother Kurtis. Well, if we plan on applying for Medicaid in the next five years (which we do), there are gift penalties, Medicaid penalties, and taxes that the state of Colorado would have a right to because of the timing of the gift, so it was advised that we get the house deeded back into my dad’s name so he can spend down the proceeds and then apply for Medicaid. That is doable, but with this change we also need permission from the court to sell the house so I submitted a motion two days prior to our original closing date to ask for the OK to sell. Now we are in a holding pattern until that motion is granted.

It finally dawned on me how much this Guardian and Conservator work entails in time, energy, research, emotional work, and more. I’m bone tired and have been settled long enough for that exhaustion to really set in. Another realization is the great weight of grief that this short amount of time has taken so much from us. We put everything in our lives on hold to come home for family and in the chaos of that have really lost the through line. Yes, we have the bus to look forward to, but no idea where to build, and the need remains to be close to the metro area while the rest of this plays out. We are grateful to be staying with Zach’s parents and have fallen into simple routines, the kids do their homeschooling most mornings, I tend to whatever work around dad needs to happen, and Zach tinkers in the bus. It’s the long slow road and man am I tired. I usually have some quip of hope or optimism I’d love to wrap up with, but I’m low on that too at the moment. For now I intend on listening to my tired body and giving her the rest she needs.

First day and last day at Phillips Drive