It’s 5:00AM and my alarm pulls me from dreamland like a plunge into cold water. Didn’t I just fall asleep? I fumble in the dark with my phone light in an attempt to find the pile of workout clothes, avoid stepping on a toy, and quickly change in the dark. Grab my gym shoes, water bottle, and backpack. Out the door.
I move my body to free my mind. Sweating at a local CrossFit gym makes space in my brain and allows me the mental rest and reprieve I need from constantly obsessing about seemingly endless to-do lists. For an hour of my life, I get to be focused on me. I live or die by an hour-by-hour calendar—both at home and at work. I am a working mom of two young children and the primary caregiver and holder of power of attorney for my father who is living with dementia. Most of my day is about serving others. This hour is when it serves me.
My daily schedule revolves around two things: consistency and responsibility. The goal is to get the kids up and out of the house by 7:15 AM for my husband to log on for work by 8:30 AM. It seems easy to forget that for a while I was working from home while parenting two children through a global pandemic, figuring out how to help my kindergartner in e-learning, while also becoming my dad’s POA. Those were the darkest days. I call dad each morning as I drive to the office between 8 and 8:30 a.m. and we discuss breakfast and the puzzle he’s been working on since Thanksgiving. I get to work and sift through emails while I begin my task list. Lunch is often filled with phone calls and emails on his behalf, paying his bills, or checking in with someone about something regarding him.
I work in an executive leadership roll for a smaller Indianapolis-based nonprofit—flexibility is key, but it seems my personal life isn’t so flexible. I leave by 4:30 p.m. to pick up both kids and call dad, again. I make it home in time for my husband to log off from his computer at 5:30 p.m. He used to have flexibility, but lost his job during the pandemic. As soon as he walks upstairs from the basement office, I toss my children in his general direction while we figure out dinner. Administer baths on bath days and put kids to bed. If only this were all as simple as it is to write. I used to have time to eat, sleep and dream art, plan dinners out with my friends, buy concert tickets, and imagine the future of my career. I used to put the work into forging a plan that would take me back to school for my master’s in art therapy. I used to have real time for my relationship with my husband and the little moments with my kids. I used to have time for my collective thoughts. Now, I am constantly exhausted with the responsibility to be everything, but Jessi.
I remember the day I knew something was off with my dad. We had traveled (pre-pandemic) to Bloomington for the weekend as we used to do quite frequently for a Sunday lunch. My dad was a great cook and often Sunday meals were exaggerated and the best kind of dramatic, filled with massive portions of all my favorites. However this Sunday we showed up and he looked disheveled and had nothing prepared. He seemed surprised, as if we hadn’t exchanged texts that morning and we hadn’t spoken on the phone the day before. The next time we went, he forgot the spice packet for the box rice. On another occasion, he served his famous mac-n-cheese with expired milk. The following trip, we ordered pizza from our local favorite spot. That was the end of Sunday meals with dad and the beginning of many lasts for us.
Somewhere between then and now, are a mirage of moments all blurred together. I moved my dad from my childhood home and into an assisted living facility at the end of last year. It was and continues to be the most complicated and consuming relationship in my life. It’s grief. We have found collective grief through the pandemic; the loss of our schedules and routines, friends, third spaces, live music, and shared experiences. I found new grief hiding underneath that grief. I am grieving my role as a daughter, buried under the grief of a caregiver that accepts all the responsibility while grieving who my dad used to be. I keep asking myself, “when will the grieving end?” Does it simply transform into a deeper emotion? When it’s all said and done, how is there any additional space left in my life for those I love? For myself?
My mothering has always been about quality over quantity. I never had an easy go with it. I wasn’t a natural. I’ve definitely made my own path and I’m absolutely okay with that. I am lucky to have my two boys. I love them so much it hurts. I often try to mirror my children’s resilience when thinking about my new role and certainly during my most challenging times. They have been in a constant state of changes since March of 2020. They show me daily how simple the basics are: laugh, play, expression, rest, repeat. We video chat with my dad, better known as “Grandad” on the Grandpad—a tablet specifically for aging adults—mostly every other day. We even Zoomed on the Christmas holiday! I’m also in awe of my father’s adaptability and it serves as a continual reminder that he is also navigating these big and dark unknowns.
All I want is a timeline. I want to know what to expect. Does someone have a schedule they aren’t giving me access to? Unfortunately in the case of his diagnosis, genetics are stacked against him and I’m all too aware, they are stacked against me. Dementia is a very hereditary and chronic illness. Is this who I will be? Is this also my story? His existence will only become smaller and continue to move further away from what he can process. I will continually be drifting further away from him while standing firm in my footing.
While cleaning out my childhood home for my dad’s big move, I found many notes. While he still lived independently, my dad survived by notes dictating where, when, and why. Reminders from food, bills, names, phone numbers, etc. I write things down, but can you imagine living each moment, trying to figure out where you are supposed to be, when you are supposed to be there and who to contact? All. Day. Long. I can’t. I found a note that had a username, password and security prompts written down for his bank account. Next to “favorite person” he wrote, “Jessi.” I sat down and cried. Grief. Longing to be just Jessi.
Because it takes a village. I never would have been able to do any of this without the support from Joy’s House and the connections from the Young Leaders Board. I was connected to Dave Holder with Assisted Living Locators of North Indy who was my biggest support in helping me find a location that best suited my needs and my dad’s needs. We utilized Estate Downsizing for cleaning out my Dad’s house when we moved and selling anything they could through online auction. They also moved his belongings to Indianapolis for which I am forever grateful. I am continually blown away with the amazing staff and support at The Wyndmoor of Castleton. From tours, move-in, communication and COVID protocols, they are truly the best senior community. Finally, I hired Senior Solutions to handle all of the legal and financial hiccups, including end-of-life decisions and the Medicaid application. Matt and Wesley are truly tremendous!