Sunday, April 12, 2015


When it comes to dementia, there is no black or white, no on or off, no absolute anything.  What you’re sure of today may be totally uncertain tomorrow.  What you didn’t even notice yesterday may be perfectly obvious today.  Dementia has so many shades, it’s enough to drive me crazzz…..wait a minute, I didn’t mean that the way it sounds.

It’s just that dementia is hugely frustrating, not only to the person who has it, but to those who live with the person who has it. 

When I began this blog a few months ago, I was determined to write it from the point of view of a caregiver, knowing I would never be able to accurately portray Joe’s feelings and that I needed to respect his privacy in the process.  What I wrote could only be through my eyes and there would be some things that I just wouldn’t share.  That's still the case.

No one knows Joe better than me. I’ve said to him many times, “I know what you’re thinking.”  But the fact is, I don’t.  I‘m seeing our lives through an unimpaired (well, mostly unimpaired) lens and Joe is not.  It’s a hard thing to accept. 

Today I decide to go to town and leave Joe and Al home.  This is not unique in that Joe is capable of being alone while I make trips to do routine errands. Besides, it’s still March Madness and I know he won’t miss me (GO DUKE!).  

As I leave, I jokingly tell him not to operate heavy equipment while I’m out. (It is truly a joke because we don’t own a tool larger than a hammer.)

I’m gone about an hour. When I return, I hear a chainsaw in the back yard.  As I open the back door, I see four guys cutting the bejesus out of our orange tree.  I have not planned this and have no idea why they are doing this to our lovely tree.

There stands Joe on the patio with a checkbook in his hand.  In a not so lady-like voice I ask what on earth they are doing.  Joe tells me the guys just showed up and started cutting, and now they want $65.00. 

I turn to the workers and demand to know who told them to cut the tree and the foreman points to Joe and says, “He told us to do it”.

Long story short - just after I left the house, the gardener came to the door and spoke with Joe.  Somehow in this conversation, the gardener thought Joe wanted to have the tree trimmed.  Of course, Joe has no idea why the gardener would think such a thing. 

As a result, we’ll not likely have any oranges next season, so for those of you I have promised marmalade, you may be out of luck.  And the tree that provides precious summer shade will be woefully inadequate for the task this year.

This sort of communication problem has now become commonplace.  There are times when I think I have Joe’s attention and he comprehends what I have said, only to discover that I have totally under-communicated.   Sometimes I figure it out before it’s too late and other times I do damage control.

I realize that I probably over-reacted to what I saw as a “random act of violence” against our precious orange tree.  I’m sure it will recover (the gardener may not).  I’m equally sure that this is not the worst thing that will happen in the course of our adventures with Al, not by a long shot.

Being a caregiver is much more than I thought.  I have always been a planner and organizer, and these are skills I now call on to stay one step ahead of Al the Arborist. 

But what I truly lack is patience.  I walk fast, I work fast, I think fast.  It’s always been important to me to not waste time, get things done and move on to the next project.  I don’t sit still very often.  I sometimes catch myself telling Joe to hurry up which is absolutely not the right thing to do.  

I think I may be obsessively driven.  (I can hear my kids right now sarcastically saying, “Whoa mom, do you think….?”).

This affliction shows up in my anxiety over our upcoming trip to Oregon.  Traveling this year will require additional accommodation for Al.  I won’t be able to drive long hours and just stop when I feel like it.  Joe will need more rest so we’ll go at a slower pace.   It will tax me, but I can do it (deep breaths).

There will be a few new things on our travel menu.  I’m going to give Joe trip notes in addition to the map I know he will have on his lap.  Hopefully, that and books on CD will help lower the stress level.  (If you’ve got any other ideas, let me know.)

Oh yes, and I will be packing Joe’s clothes.  This trip we will not windup with 27 handkerchiefs, 35 shirts and no socks or underwear (no more Commando Joe).