This is my story. Trust me, it isn't unique or profound, but it was life changing, a fork in the road, a test of endurance, leadership, patience, decision and prayer. No one wakes up in the morning deciding to turn their world upside down and launch into the unknown. My mother has been an RN for 57 years. The saying "once a marine, always a marine" also applies to a nurse. Even though she retired 10 years prior to become my grandmother's caregiver, she kept her license current -just in case. She believes in a holistic, preventative approach to illness. Probably because she saw the long term side effects of many, if not all, of the prescription drugs on the market today and the fact that she had no major illness up to this point in her life by following this mantra. I had been having conversations with her off and on for about 2 months because she was ill. Flat-on-her-back ill. I finally talked her into going to her doctor to get some tests. There were a few red flags, but nothing that pointed to the crisis that was about to happen.
I had been reorg'd out of my job in the software industry 4 months earlier and was 4 days away from taking a Project Management Professional certification test when I received an early morning call from my sister. She had taken her to the hospital where she had emergency surgery for a perforated colon. When she asked me to come from Texas to California, it didn't register what this really meant. You are immediately consumed with worry about your mother of course, but there was so much more. I had 40 minutes to throw some clothes into a suitcase, not knowing how long I would be gone or what faced me when I arrived. I'm writing this 9 months and 3 seasons later.
I arrived after dark to be met by the heaviest monsoonal downpour I ever experienced in Southern California. Lightening was flashing, the roads were flooding and the windshield wipers had a hard time clearing the water so I could see the road. I arrived in ICU to see my once active and independent mother on a respirator with about 17 IVs. She had an incision that went from her breast bone to her pelvis. There were 4 drains coming out of her abdomen and her small intestine had been rerouted to an ostomy. The doctor explained that she survived the surgery but the secondary infections were now the battle front. How my life had changed between sunrise and sunset...
The name of this blog is a reference to my Grandmother Helen. She lived with my mother on the edge of a lake. She loved to sit in the sun. Her body craved its warmth. She had dementia, which I also knew nothing about. I was in for an education.
Because some of this story will be topics explored in future writings, I'll fast forward and say that my mom is getting stronger every day. She is working toward having her ostomy reversed and living independently again. It was a lot of work to get this far. I've learned that every family needs to have discussions beyond the Family Trust, Will or DNR release. If you have loved ones that are reliant on Medicare, and/or state run insurance programs, you need to understand their complexity and the limits in coverage. You need to understand your rights when it comes to in-home health services and long term facilities (skilled nursing and custodial care). Physical Therapy, Occupational Therapy and social interaction are as important as any medical treatment in recovery and maintaining quality of life. These things are not optional.
As a caregiver, you need to take care of yourself. Don't feel guilty about it.
As I said in the beginning, my story isn't unique or profound. There are thousands of families facing their own crisis or will be. It's time to bring the discussion of elder care to the table.
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