The risks of being a caregiver is that we are HUMAN BEINGS and sometimes we get sick. Almost every caregiver I know puts their loved one’s health above their own. I care for my husband who has had Parkinson’s for 19 years, he was diagnosed when he was 36. He’s had deep brain stimulation surgery, two seizures, a number of falls that have sent us to the ER and his colon burst and he became septic and gravely ill. All this and we are only 55.
I’m active in the Los Angeles Parkinson’s community and for years I’ve volunteer to run two support groups a month for caregivers and people with Parkinson’s. I often attend a caregiver’s group and participate in an on-line caregiver group.
I think I take care of myself, I go to the gym 2-3 times a week, take walks, I keep up with my mammograms and I eat mostly organic and healthy. But, since Thanksgiving I haven’t been feeling very good. I got an UTI (urinary tract infection) that wouldn’t go away. I started self-diagnosing myself and using over the counter or homeopathic treatments. Come March I realize I’ve been hurting for a long time. I saw my GP, an Urologist, a Gynecological Urologist and nobody could accurately say why I was hurting so much. By the time a doctor gave me a prescription for antibiotics for another UTI it was too late. That night and into the next day I was vomiting nonstop and had a high fever. My husband insisted we go to the ER and my son and his friend got us there and me inside.
I had a bad UTI, and a kidney infection and was admitted to the hospital. After 2 nights on IV antibiotics, my liver enzymes began to spike which added 2 more nights in the hospital. After the liver specialist changed my antibiotic, my liver enzymes began to lower.
Finally, we were able to leave the hospital and begin to acclimate to being home again. But then I wasn’t much of a caregiver, and my husband and sons helped to take care of all of us. I was still in a lot of pain even after I got home. I followed up with my GP a few days after I got home and I told her I suspect a yeast infection. She didn’t think so but I made her swab for a culture. An agonizing few days later the test was positive and I had another infection. I don’t mean to be offensive to anyone, but my poor vagina had been through a lot. I had pain that was worse than the aftermath of giving birth (to 3 sons).
After my physical symptoms resolved, my emotions were completely out of whack and I dealt with high anxiety, depression, fatigue and apathy. My mom, husband and 2 sons along with 3 friends visited me in the hospital, but I didn’t receive support from many other “friends”. I didn’t want to burden my Parkinson’s Support Group members with my problems, but in retrospect I should have. They would have helped with food, driving my husband and keeping me company – BECAUSE THESE ARE MY PEOPLE. Even though they are busy, they understand me, love me and support me. It was silly not to reach out to them, I’ll remember that next time.
The other thing I’m going to do is to LISTEN better to my body and treat my health the with the same priority that I give to those I love. Lesson Learned.