This one is a little different. No gadgets or cool techniques.
I don’t live near my parents, I haven’t for several decades. I typically made it up to see them a few times a year and, early around the diagnosis, my family did a road trip to see me.
As the disease progressed I wanted to do more. My family was burning themselves out to try and keep some semblance of a normal life while I was just living my life a couple states away.
I felt guilty. VERY guilty. Do I upend my life that I’ve built here? Do I move away from other people I love? Quit my job? Sell my house? I saw a therapist about it and came to terms.
There are a few things I learned:
I can help from a distance. Just talking to Dad on the phone made him feel better, gave Mom a little time to step away and decompress. When he started making less sense, I would let him go down the path his mind was on. Sometimes I could follow, sometimes I couldn’t. Sometimes I had insight on where the strange paths came from. We spoke often. The last thing we said to one another is that we loved each other. That means something.
On visits I provided perspective. Dad asked for this specifically. The rest of them were too close and saw him too often to see things that I could see with visits a couple months apart. When I got home, I wrote Dad emails about what I saw - was he weaker? confused? coherent?
Second wave support. This is an important one. Ray and Mom were the first wave, getting Dad to appointments or watching him. When the time came that they needed another person in the mix, I could be there the next day.
Listening. I can’t stress this enough.
Providing frank feedback. Okay, that’s a nice way to say that I yelled at everyone. I don’t yell as a rule so when I do, it gets attention. I think it was to ultimately positive effect.
So if you are the remote family member, guilt is real. It’s okay to feel guilt. Figure out what you can do and start from there. No two situations are the same. Sometimes you will have to move. They are called hard decisions for a reason.
Don’t sell yourself short. You may still be able to help from where you are.
-Rachel