Saturday, June 27, 2015


Joe and I heading to a 50's Rock 'n' Roll dance in 1988

Caregiving isn’t just an act, it’s an art. If you’re a caregiver to a spouse living with dementia/Alzheimer’s you probably already know this.  You’ve figured out how complex it can be. You’ve likely read everything you can to prepare yourself for this life-changing performance. Through trial and error you’ve learned what works and what doesn’t, and you know that each new chapter or stage of the disease will require another layer of skill. 

As a caregiver you’re likely on duty, or at least on call, 24/7.  You’re rock’n’round the clock.

In our home, it starts anywhere from 3:00 to 7:30 AM, all depending on nothing in particular. I try to keep a routine: breakfast by 7:30, lunch at noon, and dinner by 6:00. Everything planned, no surprises.  But there are days when it takes a bit of luck for that to actually happen.

For most of us, having a routine and prioritizing are accomplished at a somewhat subconscious level; you have things to get done, you intuitively know what’s important, and you create a mental list, pretty simple. 

Now assume that some things in your mind are operating without your full awareness or control, that you’re imperfectly conscious.  Your ability to manage impulses is altered.  Planning and setting priorities become almost impossible.  Things can seem urgent, triggering anxiety with no apparent logic.  That’s what it’s like when Al helps Joe out.

The other morning, urgency reared its head when Joe decided (with Al’s encouragement) that he needed batteries for his hearing aids and we should get them as soon as the hearing clinic opened its doors.  It didn’t matter that Joe hasn’t worn the hearing aids for almost a year, we had to get to the clinic, pronto!

Joe was always extremely prompt but now things seem to have time limits.  He will only wait so long for things to happen before the lid comes off, so to speak. Say we are going out for dinner, and our reservation is for 6:00 PM.  Joe and Al begin getting anxious by 5:00 and come up with reasons why we should arrive early.   I remind Joe that the restaurant is only minutes away, but that doesn’t calm the anxiety he feels over the possibility of being late. 

This next message is for the newspaper delivery guy: 

Please, do not forget to deliver the paper.  I don’t care if you have a broken arm, have developed bubonic plague-like symptoms, or are scheduled to donate a kidney…you MUST deliver the paper.” 

I’m sure the delivery guy had a really good excuse last Tuesday.  But after watching Joe open the front door multiple times and then sit outside to wait for the paper, I called and reported the atrocity.  

No, the paper didn’t come. But the next day there were two copies on the porch.

Of course, I’m making light of things.  It’s a much better way to deal with Al than eating a quart of ice cream or box of Lady Godiva chocolates.  (Maybe that should be a published rule or something.)

Well anyway, nearly everyone I know tells me that I can’t be Joe’s caregiver 24/7, that I need to occasionally get out of the house and away from Al.  I’m so grateful for all their concern, really I am.  I totally understand their point. I know what happens to caregivers when we don’t take care of ourselves.
But at this stage in our life with Al, it’s a real dilemma.  How do you take care of yourself while also doing what is best and safest for the person for whom you provide care? It’s especially perplexing because there are still relatively normal days.  (It isn’t as though the lights have switched off, they flicker on and off.)

Most of the time Joe wouldn’t need someone.  But there are those times when he and Al need help remembering things, like turning off the water in the bathroom sink or shutting the patio door when it’s 108 degrees outside, or more importantly, what to do if Joe’s blood glucose level suddenly drops critically low.

I certainly don’t have all the answers, but I know there are resources available.  It’s about time I do some exploring and, like Lewis and Clark, discover what’s out there.

It reminds me of a country western tune (or at least my version of it).
“You gotta to know when to hold’em, know when to call for help
 Know how to plan a day
And get away
You gotta count your blessing
And the fact that he’s still able
There’ll be time enough for other stuff
When the dealin’s done.”

Last week, we finished our trip from Oregon and returned to a 116 degree day in Arizona.  I don’t have anything positive to say about that except this—thank you Willis Carrier for inventing modern air conditioning.

The Chili Cook-off in 2005