Friday, May 20, 2016


Joe during our early days in Bend, Oregon

We’re buying a home and moving, again.  It’s a process not new to us.  In fact, over the years we’ve become quite good at uprooting and replanting.  I get a kick out of watching home improvement shows where they make it look so easy; ten minutes of negotiation, slap a SOLD sign on the house, and it’s yours. 

The truth is you have to go through a lot of pain and worry before the ink will dry on a contract and someone gives you keys.  Only then does the real stress of moving begin.  That’s just the way it works. 

So why would I decide to go through all of that again, knowing that it will be even more stressful with Al (the squatter) in the family?

As a caregiver, I’ve learned a lot over the past two and a half years.  Most significantly I’ve learned that it takes a village to manage Joe and Al.  You can’t live in Alzheimersville alone. I’ve tried.  So unless I’m willing to throw in the towel—I am not—we need to make some changes.  (That sound I’m hearing in the distance is a chorus of friends and family singing, “We Told You So.”)

We could stay put, hire people to fill in the gaps and off-load some of the work involved, but we would still lack the very necessary emotional support that goes along with managing this disease.  (You noticed I said “we” because loneliness affects Joe as well.)  That isn’t to say that we have no one here, we do.  We’ve enjoyed being closer to Joe’s sister, but she herself is a senior citizen and shouldn’t be taking on responsibility for our needs.

I’ve made many mistakes.  Just after Joe’s doctor give us a likely diagnosis of Alzheimer’s, I panicked.  I decided what we needed was a warmer climate (away from snow and ice) in a very low maintenance and lower cost environment.  So we moved to Arizona.  I was healthy and completely capable of managing everything. Or so I thought.  

Boy, have I learned.

If this blog does nothing else, I hope it expresses how important it is to surround yourself with emotional support at the same time you’re insuring all the physical things are in place to face this monster.  It doesn’t matter how capable or invincible you think you are, you will need emotional support at an ever increasing level.

In the support group meetings I’ve been attending, one of the things that caregivers cite as most challenging is loneliness and feelings of isolation.  That it isn’t something that can be solved by simply having someone in who changes the bed, or does the laundry and sweeps the floors.  You’ll need time away from caregiving; time to refresh and have conversations about things other than doctor’s appointments, hygiene, or the countless other caregiver tasks.

Al doesn’t take a break. He is always there, chipping away and removing Joe’s capabilities and testing mine.  The time is coming when I won’t be able to leave Joe and Al alone even for a short time.  When that happens there will be a whole new set of issues to face and greater isolation.

So, we are moving back to Bend, Oregon into a multi-generational home, a house we’ll share with one of our daughters and her family.  We won’t be doing the “Waltons” thing (we will have separate living spaces, including separate kitchens).  Both families will hopefully still have whatever privacy is needed, but we’ll have the comfort of knowing help is just a few steps away if we need to hog-tie Al and lock him in the garage next to the kayaks and snow shoes.  Joe will have people to talk to and more things to do, while I’ll be able to sneak away now and then.  I feel completely lucky and appreciative to have such an option.  (If only we could leave Al here in Arizona.)

The other night, I lay in bed listening to Joe snore while I thumbed through the television channels unable to find anything that interested me.  I finally settled for a program titled, “Little People, Big World”.  It’s a show about a family living on a farm in Oregon.  In this episode, one of the sons had married and, with his new wife, had moved to live in Bend, Oregon. 

As I watched scenes filmed in Bend, I began to cry.  I was remembering my first time traveling to Bend as a child with my parents and all those working years later that Joe and I had planned our retirement there.   I thought back to the great years we’d spent living in Bend, in spite of the cold winters.  I could almost smell the juniper infused air and taste the clear mountain water.  I felt warm and strong thinking of being back with people we love and I realized then just how much I’ve been missing Bend.

So, like the sirens calling the captain to the sea, Bend is calling us home, back to where we both should be.