Friday, June 1, 2018

Breathing Room

THIS IS A STORY I WROTE IN THE SUMMER OF 2016 and never published. It feels odd to be posting it now - but because I have some friends who are going through some seriously hard times, I thought I should post it in case it offers a little bit of help and encouragement to the caregivers out there.
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 And just like that, things change up a bit.

Last week, I took Alex to the home for a week of "respite" care (a term for something that should be easy to find; the reality is that looking for respite care is pretty much of another part-time project that caregivers get to add to their list).

Before we went, I spoke to the director, gave them a little summary of Alex's likes, dislikes, habits, and odd behaviors. I packed a suitcase for him, bagged up a week's worth of "medical" supplies, and dropped him off in time for lunch.

As I wrote the check, I cried and worried - and just like a mom who drops off a child at kindergarten, I determined not to go back to the dining room for one last good-bye hug, because I did not want to make the transition harder for any of us.

When we first talked about doing this, I thought 4-5 days would be the longest we could stand being away from Alex. I imagined that he would be anxious and confused and sad. I thought he would feel hurt and abandoned. But as our travel plans began taking shape, and I began to think about how to organize it all, we decided on a solid week.

After we dropped Alex off, we packed and headed off to the airport. While there, I got two text messages - one was a picture of Alex gently petting the resident dog, and the second was of him banging on a drum and singing "Oh What a Beautiful Morning," as part of the afternoon music session.

So here I am feeling selfish for leaving him behind - and coming the realization that perhaps there is a path ahead of us that will make both of us as happy as possible with the crummy climax of this disease.

Laura and I spent 5 glorious days on the west coast - visiting family, sitting in the sauna and hot tub, traveling to a vineyard and tasting wine and walking to a waterfall, and taking in all the sights and sounds along the coast at Manzanita. It flew by. And I WOULD tell you that I missed Alex terribly, but that would be a lie.

For the first time in more than 5 years, I was able to take a trip without worrying about him. As early as 2011, when we would travel together, I was having to do all of the organization, arranging, packing, money management, scheduling, and driving.

By 2012, trips with Alex became all about watchful worrying. He wandered onto a freeway all by  himself in Boston in 2012 and got a free ride to the museum in a cop car. He came back to the wrong hotel (because they all looked alike) and expressed little or no emotion when visiting friend or family or attending special events. He wandered through a hallway naked in Switzerland. He nearly crashed a rental car several times in England.   He worried that the Golden Gate Bridge would collapse from under him as we walked its length and could not look up once to see the Bay or the beautiful blue sky. He was plagued by incontinence on the road - whether his urine was normal or bright blue, would get lost in hotel workout rooms, would disappear into a public restroom for 45 minutes.

You get the picture - even though there were some beautiful moments in those trips, there were very few times when I could honestly say I "relaxed." As a caregiver for someone with this illness, you are always on a low-level of alert. And it can morph into full-blown panic in a heartbeat.

I like to think I can easily spot someone who is a caregiver. They have a certain worry  about them - and yes, they laugh and smile and act just like anyone else on the outside,  but they have a habit of always looking over their shoulders. They seriously do.   Because they really cannot trust the person they are caring for to have any kind of judgement, and their loved ones are very very hard to predict. The surprises, by the way, are not usually a lot of fun - even if, like me, you think you are a pretty flexible person.

And Alex? Did he miss me? Nope. Was he worried? Who knows? If he was, I wasn't there to see it or experience it. He played with the house cat and dogs, he did his own peculiar version of yoga in the living room, he drew nude pictures of all the staff, and he took up "fake" smoking - even blowing smoke rings for the amusement of the entire staff, who absolutely fell in love with the man I was sick of seeing.   When I finally DID retrieve him they said, "When you are ready to place him, if you even think of sending him anywhere but here, we will kidnap him and bring him back here."

AND - bonus. When I picked him up, I was actually happy to see him. It turns out, I HAD missed him. And for whatever reasons, the weeks that followed went more smoothly than any weeks had for quite a while.

Caretakers DO need to take care of themselves, and friends who love them, should consider giving money to help make this possible. If you are taking care of someone, and are reaching the end of your rope, figure out how to make something like this happen for you - and then, while you are gone, really LET GO of all of it. It is better for EVERYONE!