I am in my early 30s and like to refer to myself as an aspiring local celebrity do-gooder. I graduated a few years ago with my Masters of Public Administration from UMKC. I have spent the past thirteen years building a career helping disabilities in a variety of capacities. I started out as a direct support professional (in lay men’s terms: paid caregiver), supporting people with intellectual and developmental disabilities to live independently in their homes to put myself through undergrad. Shortly after I started doing that, I also joined the ranks of millions of Americans who have served with AmeriCorps, a national service program that supports many vital social services and community programs across the country. During my AmeriCorps service, I started a youth program for underserved Latino youth with disabilities with the goal of building social and independent living skills, increasing community integration, and volunteering at a local Latino-serving community organization. The program is still there, ten years later.
After I earned my Bachelors, I had to get a ‘real job.’ I spent a year as a QDDP, a supervisor over the DSPs that work in people’s homes. I really loved that job but only stayed there for one year, when I received an offer I could not refuse to go to work at a department of my alma mater which is a statewide, federally supported powerhouse of research and training geared towards improving the social status, civil rights, and quality of life of people with disabilities. I have been there over seven years. When I started, my main role was helping the statewide self-advocacy organization by helping them coordinate and prepare for meetings and conferences, prepare informational products, and develop web tools for advocacy. I later transitioned to projects focused on providing and enhancing supports to families and my job functions changed to communications and design.
All of the experiences and knowledge I’ve gained on my professional journey have had a profound impact on my personal life. At the same time, my personal life has played a strong force in a shaping who I am as a person.
Growing Up (I’ve spared you as many gory details as I could)
I am an only child. I was born to a newlywed couple in 1986 at a naval base in Bremerton, Washington. Shortly after I was born, my parents started having marital issues due to my father’s drug use. He was kicked out of the navy due to conduct unbecoming of an officer and we moved to Blue Springs, a suburb outside of Kansas City, Missouri, where he was raised, for a short time. He became abusive to my mother, and they were divorced by the time I was two years old.
On her own, my mom and I moved to Waukegan, IL, a suburb of Chicago until her mother, my maternal grandmother passed away in early 1991. Coincidentally, my father was released from his first stint in prison at the same time. My father and my grandma Barbara came up to get us, and brought us back to to KC, where we have lived ever since. There’s not much else to know about my father other than he bounced back and forth from sobriety to addiction, from prison to being reborn, pretty much absent my entire childhood.
Since my mom was a single parent, I spent a lot of time with my grandmother growing up while my mom was at work. My grandma taught me how to read, fed and clothed me, took me everywhere with her, and helped my mom when she had trouble making ends meet. Even after I became “too cool” for Grandma and I was able to look after myself, she always looked out for us, making sure I had everything I need to get a quality education, accomplish my dreams, and have an opportunity to build a life for myself.
My uncle Kenny, Grandma’s older son, lived with my grandma for as long as I can remember. My uncle Kenny was an installation in Grandma’s house. Kenny had his wild days, and he fought his own battles with addiction and mental health, but at the end of his life, he had turned himself around and he was self-employed repairing and renovating houses. My uncle Kenny also knew a lot about cars. As long as I can remember, if my mom didn’t have wheels and didn’t have the means, Grandma and Kenny would take care of her, making sure he had a way to get around. When I became old enough to drive, he was the one who got my first car for me and I could always count on to take care of my car. My uncle Kenny, like Grandma, was always looking out for me. When my uncle Kenny passed away unexpectedly in 2009, it rocked our tiny family.
My father seized control of Kenny’s living space, truck, and possessions under the guise of moving in to take care of my grandma. Used to an institutional lifestyle (read: on lockdown), my father couldn’t handle the freedom of living on his own and a codependency arose between he and my grandma. She just could not say “no” to her son. He started using drugs again, taking money from my grandma to fund his drug use. That same year, his drug use culminated into a domestic violence situation, in which he put his hands on my grandma in an attempt to take her car keys from her. He was almost charged with first degree elder abuse, but instead was sentenced four years in prison. At this time, I dropped everything and moved in with my grandma to provide emotional support, since she was not accustomed to being alone.
In fact, after I had been living there for awhile, I realized she really didn’t need anyone to ‘take care of her.’ She was taking care of me (again)! Shortly after I moved in, my grandma had resumed contact with my father in prison, first talking to him on the phone, then sending him money, and then visiting him. Somehow I knew that she wasn’t going to be done with him, and when he was released from prison, she was going to fall back in the same trap of codependency and abuse. So a year later, I moved out, in with my boyfriend to be about my own life.
I did everything I could to make sure he got the punishment that he deserved and the whole world knew what he had done and was capable of, including writing a letter to the judge sharing his history of abuse and criminal activity, but to no avail. My father only ended up serving two years and was let out on probation. When he was released near the end of 2011, despite all of my warnings and concerns, my grandma let him move back in with her.
The next two years are kind of a blur. I minded my own business and let Grandma and my father live their own lives. Determined to live mine, I focused on building my career, getting my master’s degree and making my man at the time happy. I moved into my current home in summer of 2013 (single life!). The day after my birthday that year, I got a call from my grandma’s neighbor saying her house was on fire. My grandma lost pretty much everything, including a house she built from the ground up in the 70s with my late grandfather. Not even a month later, she had to have an emergency colostomy. She spent the next few months recovering in a temporary housing situation while her home was being restored. Even still, I left them alone and minded my business, I remember my grandma calling me after Christmas that year, asking me to take her to a doctor’s appointment and to go grocery shopping. It was then I knew that my father wasn’t doing anything for her. To make matters worse, this was the last time I saw my father, and he got loud with m, in my face so bad I could feel his spit and I thought we were going to fight.
In early 2014, she went back into the hospital to reverse the colostomy. She had communicated to her church that she didn’t want my dad to live with her anymore, because she was sure he was using drugs and he was treating her like dirt, screaming at her all the time, taking her car, and stealing her money from her. They contacted me, and with the help of the church, the nursing facility she rehabbed in, and Hope House, a local domestic violence agency, we filed a restraining order and affidavits of forgery against him. We sold her house and bounced her around a couple times until we were able to find her a new house, perfect for her needs. The next several months, my grandma lived on her own, resuming her normal activities. I visited on Saturdays, when she made me lunch, because the other days of the week she was busy- at the Y, doing her shopping and paying her bills, volunteering at the church’s food pantry , and participating in church activities. To give you an idea of how independent she was, she picked ME up for my graduation in December of 2014.
May 23, 2015 is a date I refer to as the day that lives in infamy for our tiny two-lady family. We spent the day visiting the cemeteries where our loved ones are buried as we have done every year on Memorial day for as long as I can remember. We stopped at my mom’s house on the way back to the burbs to use the bathroom. My grandma fell in the bathroom. At first, we thought she was fine and her back was just hurt a little. Three days later, she drove herself to the ER and they sent her away with some pain killers.
Early on the morning of June 2, Grandma called me and said she needed to go to the hospital and just couldn’t take it anymore. On June 2, she was admitted to Centerpoint for a T11 Vertebrae fracture. She was supposed to be discharged the following Monday. On Saturday, June 7, I received a call from another loved one’s caregiver, saying he was being admitted to the hospital! I left to make sure he was okay. When I came back, all of a sudden my grandma was very sick. They discovered that she had diverticulitis and was going to need a colostomy (another one!). When she was about to be discharged from that (after another week), they found she had a blood clot in her left arm from the PICC line they were using. She spent three weeks in Centerpoint. By the time she was embarking on the third week there, I had to go back to work. I was not able to stay there 24/7 and talk to the professionals and advocate for my Grandma and keep my job. The social worker dumped her in the Rehab Center of Independence. She was for there for three months. During that time, I took on helping her manage her finances and pay her bills.
Then she was home for another month. And then she fell again. I begged and begged and begged the hospital, don’t send her back there! We had to negotiate with the case worker and the other nursing facilities because she only had exactly 14 SNF days left. This time, she was properly rehabilitatedand she went home.
At the end of January 2016, Grandma fell again. She went to the hospital for two broken toes. They released her two days later. The following day, she went septic and we had to call the ambulance and go straight back to the hospital. Turns out her gall bladder was four times the normal size (I can show you a picture if you want). She hasn’t returned to the hospital since, and we have avoided any major health events since.
My grandma only remembers about 10% of this.
My life is much different now than I would have ever dreamed before I took on this role. Now, my life revolves around staying employed while maintaining my caregiving responsibilities.Through all of these changes and experiences, I have learned a lot and I want to share it with you. I hope you will join me as I continue on my adventures in taking care of my grandma and we can learn something from eachother along the way.