One of our favorite caregivers is Erin Crapser. Erin is mother to 5 kids, including 25-year-old Morgan. Morgan has developmental disabilities and gastrointestinal disease which requires her to receive TPN (Total Parenteral Nutrition). TPN, also known as intravenous or IV nutrition, allows patients who have issues with their digestive systems to receive the daily nutrients they need in order to survive. Receiving TPN can result in a drastic lifestyle change for most people, but Erin goes above and beyond to make sure that Morgan lives her life to the fullest. Learn more about Erin and Morgan below.
Ever since Morgan was born, she has had a variety of health issues. She was born with a developmental disability, which makes her functional age much younger than her actual age. While she has constantly been on and off feeding tubes due to her gastrointestinal problems, it wasn’t until she was 13 years old that she was officially diagnosed with a gastrointestinal disease, and until 22 years old that she was put on TPN, receiving treatment via PICC line and most recently a Central line or Hickman. Here are some things that I think are helpful for all caregivers to keep in mind:
1. Accept that the learning curve doesn’t stop
In the beginning, everything was a challenge, but even with time, new issues arise and as a caregiver you have to learn how to adapt, and that’s okay. At one point, Morgan couldn’t eat for a whole year and it took a long time to get her to a therapeutic level which allowed her to start eating and living “normally” again. Consulting a nursing agency for advice and finding either in-person or online support groups (ie The Oley Foundation) makes the process much easier. After I found help, I finally felt like the weight on my shoulders was lifted - I was no longer alone.
2. Think outside the box with day-to-day challenges
Finding solutions that work exactly for your loved ones can be difficult – so get creative! For example, instead of an IV pole for her infusion pump and IV bags, which is difficult to pull around house since the pole is too light and the bags are too heavy when full, it’s much easier and safer for Morgan to use a stroller. Morgan now uses an umbrella stroller at night and backpack in the morning.
3. Don’t ask “can” ask “how”
The most important thing for me is to let Morgan feel and live as “normally” as possible. If her siblings want to play soccer or other sports, Morgan can too if she wants to. As a family, we always try to ask ourselves “how can she do this” rather than “could she do this” - I never want to limit her potential or make her feel as if she isn’t able to do things that other kids can do.
This was actually the attitude that first brought us to Care+Wear. I came across Care+Wear PICC line sleeves right around the time Care+Wear had just started in 2014. Although back then they were only available in black, they were still the best covers Morgan had ever used -- they fit her better, didn’t stretch out or change form after being washed, and the window was great for checking on her line and ventilating for moisture.
Morgan in bandage versus Care+Wear PICC Line Sleeve
Morgan loves being active -- anything from bowling, dancing, cheerleading, basketball, and participating in the Special Olympics -- so her Care+Wear PICC Line Covers have always come in handy. She’s a big Kansas City Royals fan and recently got to wear her MLB Royals Cover when the Royals won the World Series!
Morgan in her Kansas City Royals MLB Care+Wear PICC Line Cover
4. Give yourself a break
It took me a long time to notice that I was putting a lot of pressure on myself to try and be the perfect mom and give Morgan as many options as possible. I couldn’t do or think of everything on my own -- in fact, no one can or should deal with such an overwhelming task by themselves. Let people help, don’t be afraid to let others in and don’t forget that you’re not alone!