See, I realized that I had been pretty selfish in how I dealt with it, looking at it only from the perspective of what I was loosing, rather than imagining how it was for my dad. I'm sure it's not like this for everyone, but without much recollection of the past, he truly lives in the moment. The past doesn’t always exist for him. He never takes on the worries of tomorrow. And isn’t that exactly one of the things that people spend fortunes on and countless hours in therapy (not to mention the abuse of alcohol and drugs) to be able to learn to do? So why should I dwell on that, when he is happy in the moment, and there’s not a damn thing I can do about it anyway? At this stage in the disease, all I need to do is provide quality moments for him, and he’ll be infinitely happy. That’s the easy part. It’s the selfish side that’s hard. The part of me that wants to be able to seek counsel from him, to ask for his advice, to have him try to explain to me how things work or show me how to build something. Or tell really lame dad jokes. But after all those years of him trying to teach me lessons, and me rolling my eyes and not listening, don’t I owe it to him to enjoy the moments together? Instead of wishing things were different, and allowing that negative energy to affect the air around us? Yeah. I owe him that.
One of the big things I took away from the educational series put on by the Alzheimer’s Association was something that Heather, the facilitator/presenter talked about the very first day. She said that there are 3 Rules of Caregiving, and they operate in this order:
- Outlive the person you’re caring for.
- Make sure the person doesn’t catch on fire.
- Enjoy every moment you have together.
I LOVE these rules!
Number One is about taking care of yourself. Physically, emotionally, intellectually, spiritually. However you need to. Asking for help, taking care of yourself, taking time to prepare yourself for the day, eat well, sleep, exercise, spend time with friends, laugh, play and continue to grow as a person. This is the hardest one for many people, and having a supportive network of family and friends is vital for this. Often, giving yourself permission to do this can be hard, but it is the Number One rule because it's that important.
Built into #2 is the lighter side. It helps put everything in perspective. It just matters that he's safe. It’s really not the end of the world if he puts his pants on backwards or if he even forgets his pants at all. It’s not the end of the world if he puts shaving cream on his toothbrush or milk in the cupboard. It’s not tragic if he tries to eat soup with a fork. It’s just the part of the sucky disease. The thing is that your emotional response to these things has more bearing on his response/attitude than the action itself. And you’re reaction is very much under your own control.
The third rule is a about a mind-set. You can’t enjoy yourself if you’re angry at the disease. You can’t enjoy time together if you’re stressed out about what is going to happen tomorrow. You deal with things as they come, making sure you have a back up plan ready before it is needed. This rule is hard for some people. There are many people with this disease who are combative and present with challenging behavior. We’re fortunate that my dad is easy going and he’s a joy to be around. Always has been. But the more preparation there is for the future, the less there is to worry about today, leaving room to enjoy the moments as they come.
When I visited Dad last week we talked about fishing. His vice for tying flies is still set up and he was trying to show me how it's done. But he couldn’t figure out which end of a hook went where, or which tools to use, and it seemed a lot more likely that I’d be able to teach him myself. A huge part of me wanted to take the hook from his fumbling hands and do it for him, but he kept at it and my inaction allowed him to still feel like he was teaching me a thing or two, and he was happy to be able to share his “expertise” with me. My reaction to the whole thing a year ago would’ve been to feel sad that this man who used to make art of fishing could no longer figure it out, and my emotions would’ve affected his mood. Nowadays, I sort of go along with it so he still feels like the expert. When he isn’t robbed of that sense of accomplishment, he’s as happy as any human being has a right to be. Recognizing that, why would I handle it any differently?
Sure, you’re allowed to have feelings about it. Hate the disease if you want. Cry a little if you need to. Take it out with a sledgehammer on an old tractor tire, whatever. But not where your action would be allowed to break The Rules of Caregiving. And you can’t enjoy the moments together if your moments together are clouded with these thoughts. There is no room for them there. They have no business coming out in the presence of the person you care for and must be felt or dealt with privately in a way that does not consume you.
Living in the moment is a big key to enjoying life. After all these years of my dad trying to teach me things, I finally understand this lesson that he continues to teach me. Even through the present day. Even through this crappy disease. Even when he doesn’t always know my name or how to tie a fly, or even that he's teaching me this lesson. I have immense respect for him; he’s still my Dad, still teaching me life lessons and modeling the way to live: happily in the moment without borrowing troubles from tomorrow. Thanks Pop. I’m starting to understand.