My father, whom I idolize, has Parkinson’s disease. It’s been slowly encroaching, and he has good days and bad days. He still lives at home with my mom at 83. Here’s what I learned:
- No one really thinks about their parents passing. We all have this romanticized notion in our head where the family is around the bed, and the parent passes away peacefully. With my dad, it’s much slower. He still can take care of himself, but he can’t drive, or take care of his financials. He gets confused. He hallucinates. But then he has good days.
- With a disease like this, there are good days and bad days. Sometimes you’ll feel like everything is normal. Then you’ll have a day when you worry you have to put your parent in a nursing home because he’s walking where he shouldn’t.
- Everyone tries to be helpful and give you advice. The fact is that it’s more of an art than a science with these types of diseases. Is it the diet? Should the meds be changed? You feel like you are trying to keep your footing on a floor that keeps shifting. Only you can decide what’s best….and the answers aren’t so clear.
- Have the conversations before you need to. I was lucky: my dad did his trust, will, power of attorney years ago. It’s made it easier for me to speak on his behalf.
- Don’t think you can parse out the responsibilities equally: let each sibling do what they do well and what they can do. Once you start feeling like others aren’t pulling their weight, you’re doomed.
Every day, I hope my dad has a good day tomorrow. Every day, I am better off hearing his voice than not. As bad as things get sometimes, I always think of these two things.