I felt like I was going insane while I was caring for my mom. Her sickness came on differently than Bob's and acted differently. Mom was sick with Congestive Obstructive Pulmonary Disease (COPD), she hallucinated due to her Lewy Body Dementia, what the Alzheimer's Association shortens to DLB.
Mom needed me and called for me every fifteen to thirty minutes. And, for six months until we got her medicated, she struggled with sleep and was sometimes up around the clock. Meaning: Bob and I got little sleep. At one point, she stayed awake for over 36 hours.
It's easy to get side-swiped by other people's issues, their troubles, their sickness. As caregivers, our knee-jerk reaction is to mitigate their pain, their worries and fear.
Mom went into hospice in January 2016. I remember telling the hospice nurses, "Never say the word hospice to my mom." I instructed them to remove their nametags because they all showed the hospice logo.
I was super aware of my mom's fear of dying and wanted to protect her as much as possible.
But as it happens, the old saying applies: the best laid plans...
We had an incident when one nurse mentioned that she worked for the organization. The nurse even went to the length of telling Mom that hospice is for people whose diagnoses are critical and that life expectancy is less than a year, for end of life care. This, no less, after my explicit instructions.
It took me a week to talk Mom off the ceiling.
There were so many issues with Mom's sickness and stint with palliative care that I started the first Dementia Chronicles. These current chronicles, Dementia Chronicles 2.0, about Bob's situation feel more uplifting and helpful than Mom's chronicles where I also blogged--ranted really--about the process of caring for her. The whole "nurse outing Mom's diagnosis" event is in there, if I'm not mistaken.
Mom's story is mostly a rant until it's not. I stopped writing the first chronicles when Mom died. I couldn't write anything. I was so sad and depressed. I felt guilty for not doing more. Although, I look back and wonder what "more" might have been other than admitting her into a nursing home and she and I both didn't want that. I desperately loved my mother but all the work and Mom's severe mental decline coupled with the COPD taxed my patience, my spirit, and my joy.
I felt put upon. The weight of my mom's failing health weighed my life down.
Up to the point Mom moved in, I had been cranking out novels--three to four--a year. That came to a stop. I love to write and the extra time I spent with her exhausted me to the point, I couldn't do anything more.
I started to self-medicate. I was drinking more. My two to three glasses of wine in the evening made me feel guilty. They made me feel drunk. I desperately wanted to feel something other than anger, resentment, exhaustion, and wanted to escape.
But the following day I felt weighed down not only by my mother's situation but physically as well. Everything was a huge effort.
By April 2016, I imploded. I had a mental breakdown. Bob called my sister who lives in Phoenix. I destroyed a 9"x13" glass baking dish by smashing it onto the sink. I broke other things and cut up my hands--my tools for writing. I remember being on the floor. Then, I left the house. I was crying. Somehow, I made my way down to our pond and collapsed in a heap where I stayed for a few hours just lying there crying.
He maketh me to lie down in green pastures. He leadeth me beside the still waters. ~Psalm 23:2
I repeat, I wasn't writing. Writing not only is my job but it's also my passion. Writing gives me great joy. I will pull my car over to write if something strikes me while I'm driving.
Then, down by the pond, a shard of light lit up leaves of a tree that made umbrellaed over my head. The leaves took on a golden red and I remember my crying stopped. As I write this, my heart goes out to that past me. I was lost. But I stopped crying. I pulled myself together because I needed to take care of Mom no matter what and to make it right for all of us concerned.
I stopped drinking until after Mom passed away. I could see I was no good for her that way, with how sick she was, by self-medicating when she needed me there one hundred percent body, mind and spirit.
Part of me wishes I could do it over to be better for Mom. The other part of me knows that's impossible. And yet...
Anyway, it was after my breakdown, I started to write again. Mom still called for me every fifteen minutes or so but during those fifteen minutes in-between, I slammed out a good 400 to 500 words--about two double-spaced pages of work, of crappy unedited work but I knew I would edit later. And, hell, I was writing!
During the time Mom was with us, I finished a novel I had abandoned and wrote another new one. It felt like a victory.
Things started to improve for everyone. My mood changed. By the end of 2016, I had two books to edit.
I continued to write until Mom got real sick in November 2016. She died December 19, 2016 and I remember, I couldn't write for several months after. But once I started up again, all the puzzle pieces fell into place. My life returned to a new version of before, one without Mom, one still with Bob and the critters, and one with me again in my studio pumping out stories--my passion. I finished The Dementia Chronicles with the perspective of hindsight
So, why am I telling you all this? Well, I truly believe it's important that we keep activities and interests we love in full view through whatever our current situation gives us. Troubles can sometimes sideswipe us from what we love to do.
I'm sure you've heard the old saying, "When life gives you lemons..." to make lemonade, right? I find it similar to another saying, "Count it all joy!"
2 My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. ~James 1
I love this excerpt from James for a couple reasons but mostly because my dad was named James. I miss him. And talk about a person who never abandoned his passions. That was Dad--a golfer, a puzzle whiz, and a comedian. I can't imagine who he would have been without his passions.
God bless you all.
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