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).
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