On February 27, 2018, I handed in my letter of resignation, ending my eight year career at my employer. I wanted to focus on my precious responsibility of taking care of my grandma and my friend Calvin, so I started my own graphic, web and media design & consulting business. When I made that decision, I had no idea that any of the following was going to take place.
Before I became my grandma’s primary caregiver, I was guardian for my dear friend Calvin. I used to help him in his home as a direct support staff.
Over the past few years of being with Calvin, I have remained very involved in his life and seen him often, but have been much less hands on. More recently, I haven’t been able to spend much time with him due to my caregiving responsibilities with my grandma, which began at the same time his former started providing his in-home supports.
Calvin was in the hospital for over a week at the end of last month (from 2/23 to 3/5). During his hospitalization, his physician and the hospital set up hospice care for him. Immediately after that, his residential provider (who provided his care 24/7 before his hospitalization) decided that they did not have the capacity to meet his needs and would no longer provide his in-home supports when he was discharged.
I have spent the last two weeks caring for Calvin in partnership with former staff, spending every last dime of his limited funds to cover care while I met my caregiving responsibilities for my grandma, since I did not have time to find an agency to step in and provide his supports and am not able to bill Medicaid directly.
If it weren’t for the support of the hospice agency (hospice was such a blessing to us, especially since his provider agency abandoned us) and Calvin’s former staff who cared for Calvin enough to help us while I also took care of my grandma (who went to the hospital during the middle of this two week span) and needed breaks, I probably would’ve been committed.
Calvin passed away on Sunday, March 18, 2018.
This past month will go down in the record books as one of the stormiest months I’ve ever experienced.
All of a sudden, I was thrust into the role of Calvin’s primary caregiver after nine years of separation from this role. A lot changed since I worked with Calvin over ten years ago. While Calvin used to be able to do a lot of things for himself, Calvin has been total care for a while now, which means he needs support from everything to getting dressed, moving around, eating, and taking medicine. It broke my heart to see a person who used to energetically explore his environment, laugh and smile around the clock, and do many things for himself, wasted away.
Since I have been so disconnected from the day-to-day activities happening at Calvin’s house, I felt like I was completely in the dark. When I checked on him, he always seemed happy, but then again, that was Calvin’s demeanor. He was such a joyful soul. But he was always sitting. Sitting on the couch. Sitting pinned up to the kitchen table. I had no visible clues that Calvin had declined so much.
Perhaps I was in denial. After all, his case manager keeps reminding me that he was in the hospital 8 times in the past year.
I know that we can never be prepared for death, but I had no idea Calvin was so close to the end of his life. Along with the stress of a new (albeit temporary role) and overcoming the shock of his decline, I also I found out that my loved one, a man I have considered family for ten years, needed hospice. Hospice means you are getting ready to die. Imagine the grief I felt when I found out that I was going to soon be losing a person I dearly loved.
I almost lost my mind.
On top of all that, once I had resolved to do what I needed to do to support Calvin in his home all the way until the bitter end, I lost my friend. I experienced death in a way I had never thought I would. I held Calvin’s hand all the way until the last breath and watched the funeral home carry him away.
Now that I’m back at Grandma’s, I see a visible decline in her memory and cognitive functioning. I’m bracing myself for the days ahead but still trying to stay focused on the here and now.
I don’t know what’s in store for us in this next chapter in the days of our lives, but I’m definitely ready to close this one.
Next weekend we will have a celebration of Calvin’s life. The next day I will officially be self-employed.
Here’s to temporary farewells and new adventures.