Caregiving Can Be Brutal

Coming from experience taking care of my mom in the later part of her liver journey, caring for one with hepatitis C or liver diseases can be brutal at times.

Struggling to support my mom

Fighting the brain fog she was experiencing, not remembering anything, to muscle weakness and severe joint pain, I struggled to know what to do and how I could help her.  Then add the hepatic encephalopathy, which is a severe brain fog that changes the patient’s demeanor and personality; For my mom and for many (including myself), irritability is primary during this and there really is no filter in communication. Aggression and anger tend to fly out at those around us. It was hard doing all I could to help her, but yet she was angry and so mad all the time. I felt as though no matter what I did, I was failing her.

I know in my mind I was doing all I could and this was really not my mom, but never the less, it hurt me badly. To this day (15 years after her passing), I remember those days like yesterday.

Tips for other hep C caregivers

If I had to do this over again, I would have sought out counseling during this with her. Not for her, as she was at a stage she could not help it, but for myself, to deal with the backlash she was throwing at me - the harsh words, the ungratefulness, and just plain mean words. I feel that having someone to vent to and get suggestions on how to care for myself during this would have helped me out so much.

Now, as a liver patient as well, I do my best to not let my words and my brain fog/hepatic encephalopathy fall out on to my children and my spouse. I think because I lived on the other side (receiving end) of it, I made sure to remain conscious of what was happening to me so I did not project on them. When I felt things turning to anger, I would march to my room and tell all those around to let me be and do not try to interact, to let me deal with the anger myself.

Thank you to my family

As caregivers, we need to find a break at some point to take care of our own mental and physical health. We are no good to those we are trying to help if we are running half full. I know it is easier said than done, but when the liver patient is resting, instead of doing household chores, rest as well. Go for a walk to let the stress go and keep a journal of thoughts and feelings; My daughter had this idea caring for me. She would put her feelings, fears, and frustrations down on paper. This allowed her a release. Today we share this journal with others in same situations to offer hope and inspiration.

As a patient, I thank my caregivers, Frank, Megan and Garrett for being my support, my rocks and my loves. Without you, my journey with this would be much harder. I love you, xoxo.