So my dad has Parkinson’s disease. I’ve started meeting other people who are also dealing with a parent who is ill. This disease has no cure, but I’m happy to say Dad is doing ok…meaning he’s happy, he’s not in pain, and he still enjoys life. Dementia is growing more and more , so here’s my lessons learned so far:1. Someone in the family needs to be able to step in to handle the financial and legal matters. It’s difficult, but if no one knows where the accounts are, who the accountant is, who the lawyer is, everything will be much more difficult. You need to know this before the problems start. My dad did everything, so we were the plan b.

2. Someone in the family will need to become the medical advocate. There are new drugs, physical therapy, home aides (we went through 6 before finding the right one), doctors appointments, new treatments. With Parkinson’s you’re focused on treating the symptoms, so for my dad’s drooling, he gets Botox for his salivary glands (I joked with him that I could use his leftovers).  You will spend more time navigating bureaucracy than you ever thought possible.

3. Being there will tell you the truth about your parent’s condition: I slept in the spare bedroom next to my Dad when I visited…I got up when he did, saw what he could do and couldn’t do, took notes on how often he urinated. Incontinence, confusion, hallucinations: they are all symptoms that can be dealt with…but you need to know about it to be able to tell the doctors. Often, the other parent tries to protect the kids by saying everything’s fine when it’s not.

4. Your parent may no longer be able to do what they used to, but you can supply substitute activities to help. Dad can’t travel anymore, but he misses NY, so we get the NY Post delivered, and bagels from Zabars  We got him a Keurig so he has his morning coffee.  We send him notes and cards….I have started to send him “gratitude” cards: all the things I want to tell him while he still understands.

5. Your relationship with your other parent will be stressed. You’ll want to help, they interpret it as criticism. You don’t help, they interpret it as indifference. They want you there all the time, but they don’t want you to disrupt your life. They call you about everything and anything….usually Friday night when everything is closed.

It takes a long time to figure out the right balance between your life and what you need to support your parent. It’s overwhelming, frustrating, one of the hardest things you will ever encounter. If your parents are healthy, be thankful. But even if a parent is sick, you can still be thankful.