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.