The Difference of Having a Good Caregiver

I had a very difficult, complicated year in 2021. I have lived in and out of the hospital due to several health events, learning to live and thrive on enteral feeds, and several losses in my life, including my independence and sense of self. One thing that has remained constant for me through and through is my partner.

So grateful for my supportive partner

I know I'm very lucky in the fact that someone who cares so much about me has remained committed to helping me get back on my feet both physically and emotionally. I've been on TPN this year, and most recently transitioned to an actual surgically placed feeding tube. I have failed to thrive medically all year and have required almost constant supervision (when I wasn't living in the hospital).

I'm grateful to have a partner who thinks of me first, almost to a fault. His thoughtfulness and love have kept me level-headed during a year of more loss than I care to admit, and grief. The grief of losing loved ones, the grief of not being able to see family and friends due to restrictions with visitors in hospital settings. At one point it became all too much and I asked for help and went inpatient to help strengthen my brain.

Having a good Crohn's caregiver means so much

The times we were able to attend together, he has been with me and driven me to every appointment to be a part of my care plan and to have the best set of ears for that positive outcome.

He's been there and brought me to the emergency room every time something critical happened, including 2 bouts of organ failure. He remained by my side with every surgery, procedure, and complication that would require appointments that would turn into week-long observations in the hospital.

He has been there every time I lost something this year, including my best friend to suicide. He is there and picks up my pieces and tries to put me back together and I spill my grief to him after refusing to grieve for a period of time. He remains to be my rock while I also have grieved my own body.

I went from looking physically healthy (sort of) to looking very sickly. I became weak and was constantly falling at home and he was there to also physically pick me up when I had a wreck. His job as my partner was extremely overwhelming, but you'd never know it with his collected composure and talking with him. I am so grateful to have found a partner that is willing to be with me at my worst so that long-term I can give him my best.

Helping us through the ups and downs of our illness

He deserves so much more, in my eyes. He truly is a gift. The extreme losses of multiple friends and coworkers this year have been so difficult for me, but it has been just as difficult for him. He saw me at my most broken and most hopeless. He also encouraged me to seek help. If not for him, I wouldn't be here.

It's not just us that experience hardships when our GIs tell us something we don't want to hear, test results we did not expect, and when life hands us so many losses that you, yourself, want to give up too. I'm thankful for the partner I have and am so grateful that he jumps into a situation without thinking about it.

Thank you to our caregivers who may not necessarily scientifically understand our medical issues, but still try with all your heart, even at our lowest points. You are the glue that keeps us together.