Friday, June 25, 2010


I've been putting off writing this post.  Every time I think about writing it I get sad.  I am not sure where I'm going to end up with this, but if you're hoping for light-heartedness, I think you'd better search elsewhere.

When the Cuters were little, I used to laugh when hearing about "the terrible twos."  To my mind, it was no worse than the threes or the fours or the tens, and certainly not worse than the 12's.  It was a stage, and it would pass.  More often, the new behaviors were worse than the previous ones, but at least they were horrible in a new way.  The novelty of it all helped me get through the days, and, in the end, I held onto the knowledge that they would, eventually, with the passage of time, become adults who could be responsible for managing their own stages themselves.  When things changed, I had to remind myself that it was all for the good.  Aging meant growing and developing;  it was my job to keep them safe while getting out of their way.

The mistakes I made were in getting comfortable and secure in a pattern.  While their basic characters never changed, their attitudes and capabilities and awareness of the world around them were movable targets.  It was difficult to find a handle sometimes.  This led to tears, frustration and personal growth - on both sides of the equation.  Once again, though, change was a step in the right direction.  It was necessary, it was expected, and everyone around me was going through it, too.  There were books (Louise Bates Ames wrote a series called Your Two/Three/Four/Five etc Year Old), there was research (remember Reviving Ophelia?) and there were television programs dealing with my life, right there on the screen.  The Cuters may have thought that TBG and I watched Full House and Boy Meets World just to keep them company, but there was more.  The tv kids were facing issues that my kids were bumping into, too.  The shows provided a window into their world, and a look at how the celluloid parents were doing, too.  If nothing else, it showed me that I was not alone.

Somehow, I forgot that G'ma is emulating the Cuters, only in reverse.  Somehow, I allowed myself to get comfortable, to think that this was the way things were going to be.  We are settled into a lovely routine.  She was happy and no more or less confused or forgetful than she was the week or month before.  My friends were her friends and everyone was glad when she was around.  Life was good.

We went for Sunday brunch at Acacia, and G'ma opted to take the steps rather than wheel her walker around the long way to the ramp.  By the third riser, she was breathing heavily.  By the fourth, she looked at me, plaintively, and asked "Why can't I walk up these steps? What's wrong with me?"  I had a pretty good answer - when was the last time you walked up steps?  If you don't work the muscles, it's not fair to expect them to be there when you need them.  Remember what Daddooooo used to tell Nannie?  Use it or lose it!   She agreed with my assessment, and acquiesced to seeing the physical therapist again.  After all, we're going to a wedding in 6 weeks.  She needs to be able to dance.  

We laughed, we dined in style, and the pod-castle agreed to make the referral.  Life was good.

The PT referred G'ma to an Occupational Therapist.  Why, I do not know. The lovely woman was interviewing G'ma when I dropped in on Tuesday afternoon.  Foolish woman.... I am the reliable informant as far as G'ma is concerned.  She'd not read the chart, and was trying to take a history.  I watched for a while, until G'ma began to get anxious, then I piped up and began to fill in the blanks.  I'm sure the therapist was trying to treat G'ma with respect, but the information wasn't retrievable and she knew it and she was unhappy.  And my mantra has been No Unhappy Days.  I began to sweat.

We went over the surgeries and metallic replacement parts and medications and activities and capabilities and suddenly I was seeing my mom through a stranger's eyes.  This stranger's eyes... her trained, competent, educated and emotionally uninvolved eyes.  I was listening to the questions and recognizing that G'ma wasn't answering some of the ones she'd been able to access at her last therapy appointment, six months ago.  I started to breathe deeply.  I wasn't going to cry on the sofa.  

I've made a conscious decision to avoid situations where G'ma might feel incompetent.  Sitting there next to her I began to wonder if I'd done that for her or for me.  It was easier for me to blame the pod-castle staff for not keeping a closer eye on her outfits, but was I justified?  G'ma had a system for rotating her clothing in her closet (worn on the right, clean on the left)... she'd had that system forever..... she repeated that system aloud to the OT.... but she wasn't following through.   And I'd looked outside for answers, instead of confronting the reality.  She's changing.  

I'm not prepared.  I liked the way we were going along.  I had come to terms with the pieces which had disappeared, and I was happy with what I had.  But she's a little bit more outrageous, a little bit more brittle, and a lot more tired.  Actually, she says she's sleepy not tired.  It's not the medication; she's been on the same prescriptions for a year,and none of them have needing to nap all afternoon as a listed side-effect.  Could it be a mini-stroke?  No one has ever been able to give me a firm diagnosis of her condition; it's never seemed necessary.  There's no treatment beyond Aricept (which might or might not help, but it won't hurt so why not..... ) and a structured environment to ease her through the days, but now I want more.  

I want to stop this in its tracks.  I am unwilling to watch her decline.  I won't I won't I won't.  There has to be something I can do.  Something someone can do.  I liked this last stage.  I'm not happy that it's changing to something more challenging.  The changes are subtle, but they are, no doubt, a precursor to what will follow.  More change.  More adjustments.  More fighting back the tears.  

I knew what I was getting into when I asked her to move to Tucson.  I was prepared to be the decision maker, the companion, the entertainment committee, the decorator.  I wish I had remembered that things change and that she was likely to deteriorate over time.  I was surprised when the Cuters were looking me right in the eye - when had they grown so tall?  I am equally surprised as G'ma fades away - when did she start to disappear?

There are no tv shows with families encountering my problems with laughter and love.  There is research, but it's basic and not very helpful or uplifting.  There are more unanswered questions than there are solutions.  And the sun keeps rising in the east, bringing with it more change and less G'ma.  

Really, I want it to stop.

1 comment:

  1. Ashleigh, I found you through Dr. Bill Thomas' He mentioned your blog and I want to tell you I am praying for your complete recovery from this horrible attack. I don't know when you will be coming home and I'm sure checking your messages on the blog will not be a priority, but I must tell you just from reading a few of your posts, I feel a connection to you. My Mother too has dementia/Alzheimers. She is in a very good facility that practices the Eden Alternative. I want to turn the clock back, she is slipping so far away from me now. It's hard now to have conversation, mostly me talking and Mom listening. She tries to talk but it's disjointed now. She starts and I finish a sentence for her. Sometimes she shakes her head no, that's not what she was trying to tell me. Very difficult for us both.


Talk back to me! Word Verification is gone!