We aren’t in it for the money. We are in it for the ministry. We are in it for the heart. We are in it for the people we care for. I am a caregiver.
By Aleya Drahem
I have been working with individuals with disabilities in a variety of roles for almost nine years now. I was a paraprofessional for a year in a transition program for 18-22-year-olds. I worked with Young Life Capernaum for three years. I worked at a respite facility that provides respite for families who have children with intellectual disabilities from kids the age of six to 18-year-olds. Today I am currently a full-time caregiver for a family.
When I started working in the respite/caregiving world, it began to open my eyes that there is more than thinking this is just a job. You become a part of their family. You become their best friend. I know after doing this for so long that the burnout and not feeling heard is real. I also want families to know that we truly do care about their child/adult and we absolutely are giving our whole heart to the job, to their child/adult, and to their family.
Building in Flexibility
We know that individuals with disabilities thrive on structure and routine, which is great and we love that! I have a desire for them to thrive just as much as I do. If this year has taught me anything, a big one is flexibility. I’ve always said that I am a pretty flexible person. You have to be when you’ve been in this field for eight years.
Each day is going to be different even within their routine that is in place. With this year and COVID-19, the day program she attended went completely virtual. The stores that she loved going to could no longer be a routine for her. The friends she saw were cherished from afar. This was hard, I will be completely honest. We adjusted, we managed, we shifted how we set out our day. But after a certain time frame, her family, other caregivers, and I were sad and exhausted. She was sad and exhausted. She felt those emotions just as much as we did.
We tried our best to explain that we couldn’t go to her favorite places to protect her. We tried our best to explain that one day we would be able to go back to those places. I came up with new household chores and activities for her to do. We rediscovered her love of “put-ins”, which are different containers that she organizes jewels, change and other little nicknacks, puzzles, etc.
We added in simple routines to build new skills. There is a Keurig in the house and we have a container where we put the coffee pods. Why not have this as an activity? Organizing the coffee pods by brand was so much more than a chore. It was all about flexibility. I tried to find ways to build skills, thinking beforehand and on the spot. Not all of it worked; it was trial and error.
Taking Care of Yourself as a Caregiver
The saying, “you can’t pour from an empty cup” is so true when you are caregiving. As a human being that happens to be a caregiver, I wear my heart on my sleeve 100% of the time. I love who I take care of, she’s become one of my great friends. And I love her family.
For parents who double as caregivers, it is important to give yourself some grace. Give yourself permission to buy coffee on your way to work because you have that gut feeling it’s going to be a day. Give yourself permission to buy a large french fry after work because it was an emotional day. Give yourself permission to go to bed early because you are just exhausted.
I have been with my current family for almost two years now and I am whole-heartily invested in this family, the programs. Believe it or not, I feel a lot of emotions when it comes to the care and I don’t think people understand that.
What Other People Think about Caregiving
When people ask me what my full-time job is, I say, “I work with a young adult with significant disabilities.” The reply I get in return is usually always along the lines of “oh it takes a special person to do that.” In reality, it doesn’t. Being a caregiver takes a person being willing to meet a family and their child/adult where they are. It takes a person willing to listen and be patient. It takes a person willing to have fun and make the person standing before them laugh.
Honestly, I am not a big fan of that “it takes a special person”-complement. The young adult I care for has a seizure disorder where she usually has three to six seizures a month. You’re probably thinking that’s a lot, but at one point in her life, she was having up to 100. When she has a seizure she loses control of her body for about two minutes. Sometimes she bounces back without a problem while other times, she needs to sleep for hours and isn’t 100% with us.
When she is hurting, my heart hurts. I mentally check out when I come home and also sleep it off because I love her dearly. She is a part of my friend group. She is very much a part of my life. I so badly want to take those moments away and protect her. I can’t fully explain why emotions are stronger on some days rather than on others.
I want parents to know that it is more than a job to me and to many others in our field. It is me hanging out with a friend every day when I go to work. It’s going out shopping to her favorite places. It’s trying new restaurants because we both love food. It’s getting up early before the sun comes up to get myself to work. It’s jamming out to music in the van despite people watching.
So when people ask why I care so much, it is simply because she is one of my best friends.
About the Author
Aleya Drahem is newly married to her husband, who is in the Army. Originally from the South, she received her undergraduate degree in recreation/leisure studies with minors in art and psychology. In addition to being a caregiver, Aleya is currently pursuing her Master’s degree in Special Education in Secondary and Transition. In her free time, she loves to go hiking, travel, find new coffee shops and explore antique stores.