When I first took on the care of my mom and dad (specially my mom) five years ago, I was dealing with depression in a big way. I refused to let that stop me – I felt that caring for them would drag me away from myself and give me a purpose. I knew it would be hard, but I avoided thinking about just how difficult the road would be.
Yes, it was the hardest thing I have ever done, that I can remember, in my entire life. Twenty-four/seven care, when my mom was demanding physically and emotionally and my dad was falling on a daily basis but still driving his car and taking walks. After a year, we started having help come in so I could get out of the house without worrying about terrible things happening while I was gone. I thought it would make life easier, but although I did get out to shop, my parents were never happy with the hired caregivers. They didn’t do things the same way I did. There were things they were not allowed to do (dispense medicine) legally. Sometimes I came home to disaster. Once I was even asked to come home because of a problem.
A year and a half later, when we were sort of acclimated to the hired caregiver thing, I was frankly still utterly exhausted. Mom was waking in the night thinking she was in the garage and when she called dad’s name he didn’t hear her. So she got up. And she fell. And she fell while walking with her walker. There was other behavior that wore me out related to her dementia and bathroom issues. I found it more and more difficult to be patient and loving. I thought if I could just not have to care for her all day and all night, things would be better. It all came to a head before I had to have surgery, and mom was placed in a nursing home. I thought: now I can be the loving daughter I wanted to be. Things will get easier. And they were, in the fact that I was able to sleep all night without interruption. But mom was extremely agitated at the nursing home, and it didn’t get any better on that front. I spent time running back and forth to see her with dad. Sometimes dad would drive himself. Then that had to stop, because it was just too dangerous for him to walk from the car to the building without a walker. I started driving to the nursing home every day.
When it became apparent that mom was in severe decline last month (declining all year), I thought it would be a relief when she died; a relief for her, and a relief for those of us left behind. I was sure that once I no longer had to visit the nursing home on a daily basis, I would have the time and energy to get something done here at home. Apparently that is not how it’s going to work. I’m lethargic and just as exhausted as when I was going out every day. Dad and I have lost that daily focus.
So now what? We are people who are not good at structuring our days – at least I am not. I have things that need to get done. Cleaning and sorting and organizing. I have forgotten what I love to do – I don’t remember what fun is. Part of me wants to get in the car and just take off on a road trip. I want to take craft workshops, art classes again. The other, exhausted part of me wants to know who I’m kidding. I have no idea where the energy would come from to do even the things I think I’d like to do.