My Story

Hey ya’ll! My name is Virginia and I am a young/millennial caregiver.

I am 23-years-old and I have been caring for my mother since I was in middle school. My mother was diagnosed with Multiple Sclerosis in 1994 shortly after I was born, and then Rheumatoid Arthritis in 1999. She suffered from symptoms for years beforehand. On top of both of her autoimmune diseases, she now also suffers from 4th cranial nystagmus, spinal stenosis, occasional sciatic nerve pain, and osteoarthritis, along with depression, anxiety, paranoia, and occasional delusions/hallucinations.

When I was a lot younger I can remember my parents trying to lightly explain that my mom had things called diseases but I was too immature to understand it. One of the first things that sticks in my mind was how much my mom said that she was fatigued. I had no idea what “fatigue” meant. When it comes to older memories of my mom, my mind becomes foggy. It’s something I am ashamed of, yet it is also a driving force behind this website. I want other young caregivers to take notice and realize how important documenting this life and journey is to not only understanding a disease or diagnosis, but the person who is dealing with it directly. I cannot remember what year it was when my mom had to start walking with a cane. I feel like it was 2004, but I remember her not being able to come to my school functions due to her fatigue and difficulty walking around 2002. Around 2005 I had to start occasionally taking showers with my mom on days when she was unable to bathe herself. This is also when her mood and emotional state started to change. Her outbursts crushed me. I remember keeping a journal that was filled with nothing but wishes of suicide and frustration and sadness. In 2006, when I got to middle school, my parents had to buy an SUV for mom to drive because it had become too difficult for her to get in and out of her car. The selling of that car I had known my whole life devastated me. Little did I know at the time that my mom was just as devastated but for an entirely different reason.

During that same year mom had to start using the motorized scooters that grocery and retail stores provide. Embarrassment shook me to my core every time I had to walk beside her and help her shop. Other adults and children always stared at her, which made my anxiety worse. I didn’t know how to handle the changes my mother was going through. Mom also took her last vacation ever when I was in middle school. Her, my dad, and I struggled to find balance and happiness. My freshman year of high school is when mom’s physical and mental capacity really started to shift. Her fingers and toes became more inflamed and curved. Her pain increased. Her gait got worse. We installed a chair lift on the stairs because she could no longer walk up the 13 steps safely. We installed handicapped toilets in the downstairs and upstairs bathrooms with grab bars attached to the walls around both so she could feel safer and more at ease. She would bicker with my dad endlessly. She would accuse him and me of things. She would get irritated and angry extremely easy, followed by a period of sadness. Nothing I did ever seemed good enough. My relationship with my mom during the first half of my high school education hit an all-time low.

My grades also hit an all-time low. Calls home from teachers seemed to happen on a monthly basis. I just had no idea how to balance what was going on at home with trying to do my best in school, figure out who I was, focus on getting a first job, and trying to make friends. I am a very sensitive person, and I get overwhelmed very fast. That’s always been the case and it still is to this day. It was around that time that I finally started to research on the Internet what exactly my mom’s diseases were and what they entailed. I had no idea then that what my dad and I were called in terms of her was a “caregiver”. I also had no one to connect with now that I had this newfound information. Everyone else’s parents seemed “normal”. I would try to explain away my mother’s screaming voice coming from my cellphone voicemail as just another one of her “bad moods”, and when I could rarely spend time with my friends after school or on weekends because she didn’t like me being away from home I just lied to the ones around me and told them I had other things to do. There were multiple instances during senior year when I worked 30 minutes away from home that mom had fallen. I received her calls in a panic, causing me to frantically tell my manager I had to run home. I think my anxiety and paranoia of being away from home now has stemmed from that.

When high school graduation rolled around, I decided to not even fathom the idea of going off to a four-year university and instead chose to stay home and go to the community college close to my house so that I could stay home with mom and dad and take care of her. (That choice was also driven by me being an introvert.) By this time she needed walkers to help her walk around the house, a lift chair in the living room so it would be easier for her to get up and sit down (she also could no longer sleep in a bed so she started sleeping in that chair as well), she could no longer drive, she could no longer prepare her meals, she could no longer take showers without my assistance, she could no longer dress herself without my assistance, she could no longer order medicine or make appointments without my assistance, etc. Because of all of this I looked into taking as many online classes as I could so that I wouldn’t have to leave home for extended periods of time. While I at first struggled but then fell into my groove and loving my classes, mom started to have very bad and graphic delusions and paranoia. She accused my dad of even more things, calling up members of our family and his friends and telling the lies she believed to be true. She became incontinent and had to start wearing Depends. She also had a very severe flare up of sciatic nerve pain where for a couple of months she literally could not walk nor get up from a sitting position without my dad’s help or my assistance. Out of all of the years of this, caring for her while I was in college was the most difficult. Obviously at a community college you can only acquire a two-year Associate’s Degree, but with my school, work, and caregiving schedule I got my Associate’s after four years. Two months ago I finally graduated with my Human Services degree that has a focus in Gerontology and Disabilities.

My degree choice was (as you can guess) inspired by my mom. Taking care of her and seeing the struggles she goes through every single day led me to look more into caregiving, and the elderly and disabled communities. A majority of my classes in college had to do with health, health care, death & dying, and other topics such as those that have heavily influenced and educated me on so many more issues that affect those demographics. I went from not knowing what type of situation my family and I were in, to now being so passionate about advocating for this cause that I have found my true calling in life. I am hoping that I can be a beacon of light to others and help change peoples lives and help them. I have been networking and talking to others who care and that has helped me find peace immensely. Aging and caregiving are such important topics, and they usually are experienced by everyone in life at some point or another. Being a caregiver is a 24/7 job and at some points I already feel burnt out. But I will never give up. If you’ve gotten to this closing sentence, I thank you for reading a little bit about my journey. I want to continue to share it, educate, and help others as much as I possibly can.