There are two areas in my life that are new to me; Hospice Care and cooking Okra. Over the last year, my father has resided in a nursing home. That was a tough decision, one because my favorite Aunt was placed in a nursing home years ago, and it was a poor experience that I would not want anyone to go through. At that time I knew nothing about nursing homes and had never walked in one, and I was floored by what I witnessed, the treatment of our elderly was jarring. All I had to go on was that experience. Unfortunately, she passed away in a place that was deemed a cultural shame to place her in, to begin with.
When I was told that he had a terminal diagnosis, there were truly no other options. What could I do? I felt helpless!
I remember during that time researching, making calls, and trying to restructure my life so she didn’t have to stay there, the stress was an enormous weight. I thought that was a one-and-done experience. I never would have imagined that many years later, my father would be hospitalized, and the only option was placing him in a nursing home. When I was told that he had a terminal diagnosis, there were truly no other options. What could I do? I felt helpless! Here I was again in a cultural war within myself about what family, illness, and end of life meant. As each week and day passed by, my father’s body was changing and weakening. By then, I only knew this, my father was loved by us as a family, and those who cared for him in the nursing home loved him.
I will say this, in order to emotionally survive a nursing home experience, you have to close your eyes, and ears, and tame your tongue, that in itself is grueling because you are at the mercy of everyone who cares for your loved one, from the staff who bill you, the staff who serve the food, the staff who wash the clothes, etc. I’ve learned even with those emotional hardships, you begin to understand what the staff faces each day, more residents than workers, more hands to hold, bodies to wash, and medicine to provide. Most times you are a solo staff member or a duo, trying to make it happen. How sad!
One particular night I spoke to a nurse about my father’s complaint regarding his foot hurting and the nurse decided to have an open conversation about Hospice Care. Now you have to understand the nurse who spoke to me about Hospice Care did not look like me, and she didn’t understand our differences. She clearly was raised to believe Hospice Care was and is a good thing, and I was raised to believe, you don’t put loved ones away, that it’s shameful, and Hospice Care, is deemed allowing people to just outright die. I didn’t understand the process, nor did I believe there was any value.I did a little eye roll which I’m sure she didn’t understand. Black women have their own non-verbal language, an eye roll can mean I’ve had enough, this is getting on my nerves, can you believe this is happening, who left the refrigerator door open, did someone eat my ice cream, or she is seriously dating him, or a I miss you why didn’t you call, and the universal, we don’t put our loved ones away in nursing homes, and Hospice, what are you trying to do kill my father.
This was my second experience so I carried guilt that I couldn’t do anything, other than choose a nursing home for my father where people would love him, and let’s face it, it was the end of a long work day, and being a caretaker at the same time, yes eyes rolled. Though the conversation was not convenient for my cultural experience, or the exhaustion I was feeling at the time, it was needed. I understood later that she was lovingly advocating for my father, and I did pray that my father would be loved there, and so that was her expression to him.
It’s a generational mindset about Nursing Homes, and what we, I, as African American women believe about end-of-life care. Generationally loved ones passed in the living room where the family provided care, we talked about Jesus, sang, ate, people came to see the body in the home, we all knew the neighborhood undertaker, the funeral home knew the neighborhood and neighbors, Mr. Jones walked in to tell you the undertaker would be late because he had to pick up Mr. Johnson, Ms. Mary brought a cake that she made herself because somehow she knew the time was near, the Pastor in the neighborhood sat in the house with the family, prayed and preached a mini-sermon, family, and friends were there as they talked about your loved one, who was basically laying or sitting there, then a mourner who would appear screaming or crying louder than the family, it was normal in a comforting way.
When I looked around my father’s nursing home while visiting him, and witnessing the end of life, the suffrage I noticed seemed unnecessary.
I decided our generational story had to be different for his sake. I read and researched everything I could, I asked tons of questions, and I made the call to place my dad in hospice. Painful, yes, did I just betray an entire race of people? Did I make the right decision for his life?
My first meetings were about music therapy, family support, taking care of myself, Pastoral care, trusting the process, and yup, my occasional eye roll. I thought this is why I go to church and have Jesus, because it sounded like an overly feel-good commercial with a bad ending. I literally said to myself with the eye roll, here we go, the violin, let’s hold hands, breathe, snap our fingers for the poetic moments, and then scene. My mind could not fathom or even envision what hospice was to be.
Hospice to me meant during every visit with my dad I decided he could eat as much junk food as he wanted, drink soda until he belched a song, and when he requested Okra with rice I would cook it. Now hear me out. I didn’t grow up eating Okra, I just heard about it when my older relatives mentioned it, I can’t wait to eat some Okra. It was somehow a delicacy that you had to cook right, or you were talked about in this way, if Roxanne made that Okra I’m not eating it. Cooking Okra for my dad felt like the newness of hospice, I didn’t know anything about it, I didn’t want to know, and it felt uncomfortable because I didn’t know the process of how or when it would end. It’s amazing how you can equate something so simple to a life-altering experience. Every week I ask myself, did you make the right decision? Just like I asked myself, did I season the Okra right, did I cook it well enough, and would someone eat the Okra I prepared besides my father?
What I now know is this, Hospice Care is a loving song to sing to my father, and weekly interactions with my father’s hospice care team have been the blessing my father and I need.
The reality is I can’t be there all the time, if you work outside or even inside of your home, you are constantly juggling work, and life, with a sprinkle of very few people caring, that’s where the burnout lives. Hospice Care allows me to breathe when I feel like I’m suffocating from the pain and the process. As a family, knowing a music therapist is there to soothe him, a social worker to ease our fears, Pastoral care to hear my father’s stories while he smiles, his Hospice nurse who bends down to hear my father’s whispers, was it the right decision? Yes!
In this life unfortunately we will have to do things we don’t want to for the betterment of someone else, whether placing someone on Hospice Care or cooking Okra. If the betterment is for another person you love and not the betterment for you to feel good, the decision becomes greater than your need to be the center of someone else’s experience. My father coasting out of this life is not betterment, but my father having the dignity to fly on his terms, is the advocacy his Hospice Care team, CNA’s and Nurses fight for each day. Sadly, I thought to myself, what if the person who didn’t look like me allowed that moment to hinder her words, where would my father be in this moment? Where would I be? What if his care team, who don’t look like me, didn’t have the difficult loving discussions with me? Where would we be? What if those who didn’t look at me, I didn’t allow them to comfort me? Where would I be?
Hospice Care has allowed me and my family to see a world we never knew, to be educated on the very thing we unconsciously feared, to walk with my father on his journey, for the people in the back of the room, yes his journey, to feel the breeze on days when we sit together and he’s silent because he’s transitioning to a place where there is no pain or cancer, we have understood better each day, why Hospice is needed. A new generational mindset formed when I allowed myself to hear the gentle words of that nurse, by allowing those who care for my father to comfort me. Hospice Care has by far been one of the hardest moments in my life, but a moment when I can love my father with no boundaries. One day, I hope it’s just “Humans Transitioning another Human Care”
Hospice is not the end of my love commitment to my father, but it has been the love letter I needed to write to him, without words, but actions. I am sure the days when my father goes inward, and when the world becomes smaller, he is and I am thankful for the sacrifices of the nurses, CNAs, and hospice team who care for him. As if Okra could speak for itself when it met my father on his terms of how he wanted his end to be, his journey, it was because I opened a hospice door and closed a generational mindset.