I haven't written about being a caregiver in a long time. Mostly my silence on the subject has been because I've compiled my earlier writings into a memoir and am looking to publish. It's all very exciting and scary and vulnerable.
But over Thanksgiving weekend, Pete and I went to DC for our 20th wedding anniversary. Travel has become more difficult and we haven't been on a vacation in over a year together. I've traveled without him but we've been slow in figuring out what to do together - what will work? What won't? Do we have the energy to figure this out? to fail? We weren't sure.
But 20 years of marriage deserved some kind of vacation and so to DC we went. We live close enough to drive, just 3 1/2 hours away. We booked a room with a wheel in shower at the Harrington Hotel, just a block and a half off of the mall. We were excited to see some museums and eat some good food. Here are some pictures of our time away with some commentary of what worked, what didn't and bits and pieces of Scibienski humor sprinkled in here and there.
We traveled with one really large suitcase because I can only pull one suitcase at a time. And we decided to bring a pull bar that Pete uses in bed. His computer and my ipad were a must. Other than that we figured we would be in civilization and we could purchase something if needed. (And in fact we had to buy umbrellas on day two; thank God for hotel lobby stores.)
We both really enjoy art and we love good conversation - it's been the foundation of our lives together. So museums and food were a really good idea!
The thing about Pete and I is that we actually like one another. And so our mantra with traveling this time was "whatever happens, it's going to be ok. We're together." I'll admit that I almost lost my patience at least twice because his fatigue didn't kick in when I would've preferred it to kick in. I read at least 300 pages of a book. In other words, there was a lot of down time while Pete rested. But the truth is I really needed to rest. Sometimes I swear his fatigue is one of the greatest gifts in my life. Oh and the first morning, I almost wigged out when I thought there was no hot water - only to find out that I didn't know how to work the shower.
The number one learning I have from being a partner to someone who has a chronic illness is that things don't go as planned. So too much planning is a waste of time. And not enough planning is just plain stupid.
In the end, we came away with some Christmas gifts and some memories. Pete is still the coolest person I know and I'd pay $14 to marry him all over again.