Numbing

I wish I had the proper metaphor for the complicated grief of being a dementia carer.  Is it like having a tooth pulled for five years?  Like having one's leg cut off a millimeter at a time?

I feel some shame for my current relapse into weed addiction.  I was straight all through May and then fell again.  I will need to sober up again soon in order to do my proper work as a facilitator in an ongoing church program.  I sort of look forward to getting clear again, although I know the first

two weeks will be very hard.  And then I will be able to "feel my feelings" again.

Great.  Just fucking great.  

I think about my former therapist and his way of asking if I was numbing myself, his tone telling me that it was exactly what I should not be doing.  Why is it that it's okay to numb some physical pain but not emotional pain?  

My current therapist understands why I'm numbing.  She's not supportive of my choice but she doesn't shame me.

Plucked

Photo by Javardh on Unsplash

Hope is a bitch.

Yeah, I know, it's also one of the great "things" (NIRV) that "abide" (NRSV).

But here's what I mean.  And if you're a fellow dementia carer you've had this experience.  After a couple of almost nonverbal days we'll have a conversation and it will seem like he is "back."  That is the bitchy part of hope, to throw that feeling of hope into my brain, that feeling that he's still there.  That sense of connection.  And then..well, he'll say something like, "Oh, you wrote a book?  What book is it?"    And while I've understood for two years that his short term memory is shot, still, after all the brou-ha-ha about the book in my life, such reminders can be painful.   The man I knew is gone and isn't coming back and this ancient child is what is left of him.  And I want to punch hope, that thing with feathers, in the nose.

Faith and love, however, are supportive, however, not a pain in the ass.  I still feel such love for him when he smiles, or does some household task, or hug him.  The soul in him I love (and that my "out of the everywhere into the here" soul chose before my birth, or so I have been told) and have loved since I first met him.  We've had many struggles but he had faith in my inner goodness, even during the years I was acting the "bad girl."  And his faith in me paid off...he has a loving caregiver and a home to stay in during this last strange inner journey. (Unlike my beloved Aunt Huldah Bell, who had to depend upon loving friends and family who didn't live with her.) And I have faith that the Great Mystery (a.k.a. "God") has been guiding my old sweetheart and me on our walk through the valley of the shadow.

I think I'd rather be without feathers.

Theatrical

A friend sent me a link to a play offered by Senior Theatre Resource Center. The play, Love in 4/4 Time, by Gary Young, focuses on two couples as they deal with partners who have dementia.  I decided to purchase my own copy so that I could share this
paragraph:

Photo by Lennon Cheng on Unsplash

CAROL: (beat) That was the moment I fell in love with him—and embraced his spontaneity. (beat) Thirty-five years ago. (beat) That story sustained our marriage. (Ted stands, turns on stool with back to audience) Now, he doesn’t remember it. (beat) Alzheimer’s has… has robbed us of his spontaneity. (beat) Now, he calls me “Sis.” (beat) Ted’s sister died at eleven, he was nine at the time…I used to visit Ted every day, without fail, around lunchtime…now, three or four times a week…(beat) it is “The Long Good-Bye,” to quote Nancy Reagan. (beat) I still long for him, miss him…need him…but when I look into his eyes, I can see his memory of me fading…I feel like I’m fading away too…his doctor said, “Ted is dying because his brain is dying. (beat) Eventually, Ted’s brain will not remember how to breathe.” (beat) You know, it’s not death that weighs on me…it’s the never-ending dying… I have two prayers: one says, “Please not today, please - let us have one more day together.” The other says: “Please…let it be today, let us be through with this. Please, please, please.” (beat) In a sense, Ted’s left me behind…and who’s to say that I won’t “go” first? Would he miss me…would he even know that I died? Died, loving him. (beat) So, what now? What’s next? (Carol, shrugs her shoulders in resignation.)

That's how every day is.