What Now, Alzheimer's?

     Something new is happening,  and unfortunately, with Alzheimer's disease "new" is not good.  Yesterday while I was out, Bob spent a few hours with Jack, a hospice volunteer.  They enjoyed some opera music, a cup of tea, watched a National Geographic DVD.  Then, out of the blue, Bob became very upset and agitated and would have nothing more to do with Jack.  At one point, Bob even took off but, fortunately, didn't go beyond the carport.  Still, this gesture worried Jack who was rightly feeling responsible for Bob's safety and well-being.  So Jack called me and I came back home as quickly as possible.
      Bob was pretty uptight when I got there and it took another half-hour or so after Jack left for him to relax and be able to move on.  We had a glass of wine together and then ate dinner, but I could sense that he was still not quite relaxed even by the time he went to bed.  He even tried to signal me with hand gestures that he was feeling a bit "off."
      Then this morning when I was trying to help him dress, as I always do now, he became agitated again, asking me several times "why are you doing this?"  I kept trying to distract him (as all the literature suggests), but his agitation lasted for a good hour.  Then all of a sudden he changed again and was ready to get dressed.  Throughout the day, however, he was very restless.  Whenever I was unavailable to do something with him, he was pacing the house and sighing heavily.  We were able to get out for a few hours, ran a couple of errands, walked in the park, and then came home and did a bit of yard work.  He seemed mostly to enjoy all of that activity, but once we were back home and I got busy with balancing the check book and fixing dinner, he resumed his restless pacing.  I tried to help by putting on a PBS Great Performances concert, but he seemed unable to focus on that. He tried taking a nap but that didn't happen, either.
      I know that Alzheimer's eventually begins to affect the emotional center in the brain.  It causes people to lose emotional control.  Some people become agitated and angry.  Some laugh without obvious reason.  Some cry.  I can't help wondering if these episodes this weekend are signs that the disease process is deepening.  It is a little scary to watch this play out in Bob, but even more, it is sad.  I felt such compassion for him when I returned home yesterday because he was so troubled and couldn't begin to express why.  How very frightening and lonely to feel something so intensely but not understand why nor be able to talk about it.

"If Alzheimer's Could Speak..."

This was posted on Facebook one day last week and really touched me.  I admire the empathy of the author who was so able to "get inside" the mind and heart of her loved one.  I am sure, if he could, Bob would tell me this is exactly how he feels:

If Alzheimer's Could Speak...

by Tara Reed

Talk to me...

I can hear your words

and they still touch my soul.

Smile at me...

My eyes can see you and feel your heart

even if I don't remember how to smile back.

Hold my hand...

I can feel your energy when our hands connect.

It makes me feel safe and less alone.

Love me...

 My heart can feel your love even if

my words can't express mine.

Live your life...

Help me on my path but don't press pause

on your life.  Be the vibrant person I know and love.

Trust the process...

I know this is hard and not what we planned

but trust the process.  We can't control it but 

we can choose our focus.  Remember the good

times, know that I am ok and that

you are in my heart always.

Reflection on our Walk

We walk in silence.
Both of us know
you are leaving.

Neither of us can change it.

You have no choice, no say in the matter.
I don't beg you to stay.
That would only make it
harder for you.
You have no choice.

Even though you don't want to leave,
you will keep on going,
keep leaving--me, all of us,
and everything you've ever known,
done, been able to do, loved.

You will keep on leaving
little by little.

And all I can do is
hold your hand,
wait and watch
until you're gone.

You know this.
I know this.

We walk on in silence
holding the knowledge in our hearts
where we don't need words.
We already understand.
Our hands hold on
for our dear life.

                                --May 25, 2016

Good Friday Grief

     This morning, after watching Bob struggle to figure out where his fork was (sitting next to his plate), I offered it to him.  Then I watched as he tried to figure out what to do with it.  So I put some pancake on the fork and held it out for him to take.  He took it, but then struggled with what to do next.  Ultimately, for the first time, I ended up feeding him.  This was followed by his not being able to drink his orange juice.  I put it in a cup with a handle, thinking that might help.  He didn't know how to pick it up.  Twice I helped him put it to his mouth and he managed to drink some, but it was difficult so we have put it away for later.  Maybe this is a passing dilemma, as many Alzheimer's losses are--they come and they go for a while.  Or, maybe it is the beginning of a new place along the way.  We will just have to wait and see.  For now, my heart is even sadder for him.