Tuesday, December 3, 2013

Changes and Transitions

Dad and I cross this bridge together.
Photo by Karl D. Stephan
I have stepped off of a cliff, or at least I feel like I have. It's not the first time that I've resigned from a job, but it is the first time I've quit because my personal life demanded more time than any professional duties.

Just before I started being my father's caregiver, I got a web-based job writing about breast cancer for About.com. I took on the task of writing this because I had gone through the whole breast cancer experience about 4 years earlier. For the record, I am an 11-year survivor. I spent 7 years and 7 months researching, writing, illustrating, and taking photos about breast cancer. It was a completely web-based job and it was a job that I could do from any place that I could hit the internet. Have laptop will travel.

About 5 months after starting that job, my father was told by his neurologist that he could no longer live alone. She also got right in his face and told him to stop driving, or else she would report him to the authorities! My mother had passed away one year before, and Dad had been living alone, eating 2 meals a day at a diner and a cafeteria, and mowing the lawn for fun. He also watched TV. Lots of TV - but most of it was like, The Weather Channel. Dad was on meds for high blood pressure, but he frequently forgot those, and sometimes passed out and fell. One time when I visited, he met us at the door with bruises on his forehead, elbow, and knee. Of course, he had no memory of how the bruises got there, and was unconcerned. He just wanted to visit with us and go hit the cafeteria!

My sister and I talked over the situation, and Dad agreed to try living with her. Four days later, he was back home. He also tried assisted living - also a four-day experiment. Next stop: my house, where he originally agreed to spend at least 2 months. I still have the paper he signed, agreeing to stay that long!  Seven years later, he's still here. Dogs and all. More on the dogs later, I promise.

Dad's dementia has progressed very slowly. It took a drop when he started having a heart problem - atrial fibrillation - about two years ago. He used to able to keep himself occupied around the house, he liked to read, watch TV, walk the dogs, and even took showers! 

Now he needs directed activities, has trouble reading, and cares less about television, unless it is specific programs. We tried having a hired companion once a week - but Dad actually remembered the guy and complained so strongly that we dropped the service.

So it is up to me - with lots of help and support from my husband - to keep Dad healthy, contented, occupied, safe, and on schedule. If he wakes up at 2:30am and wants to walk the dogs, its up to me to talk him down and get him back to sleep. I fill his daily med doses and make sure he takes the right pills at the right times, and gets refills in a timely manner, We keep healthy drinks around to prevent dehydration. I plan meals that he enjoys and can navigate even with low vision. Dad and I attend 3 different senior centers a week, we stay socially engaged. I keep his appointment calendar, steal his dirty clothes (and sneak clean ones back to him), and create small photo albums that cover areas of memory that help him. I'm busy. Did I mention that I give him haircuts too?

All that leads up to this: I've quit my job writing about breast cancer, and have stepped wholly into the world of  dementia caregiving. This is a role that I struggle with daily. But having Dad in my life is important enough to me that I decided to jump off that secure cliff  - the familiar world of being a working girl with a regular paycheck - into a more personal role. Dad is making this transition too, although he is aware of it only around the edges of his memory, he knows that I am there for him, every day, with every memory that he might want or need. That's what I am for now. That's my new mission.

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