Adventures in Dementia*land: Part XIV (final)

Just How Did You Get Her There From Here?

So she ended up in Wonderful Place Number One (as far as these places can be wonderful). But she was still super far away.

We knew that it would be best if we could get her closer to us, she would benefit from our more frequent visits, as well as our more effective advocacy with the facility (these places are always better at what they do when there are involved family members). We knew any move, if possible, would involve the risk of it being so overwhelming for her that she would experience further loss of capacities – perhaps a severe loss like lose her ability to recognize us, and thus feel connection and diminish her capacity for pleasure. Still, we thought it worth the risk.

So we hatched the bold/foolish plan to move her from the West Coast to the Midwest.   In the months leading up to the wild-idea-of-a-plan, I was intimidated by all the logistics: just how does one get a not-yet-elderly-yet-still-dementia’d lady two-thirds of the way across a continent?  After exploring the possibility of driving 2,000 miles in a car, or taking a train that same distance, and even looking into the ridiculous cost of a pplane-841441_960_720rivate airplane just for fun, we decided on the obvious: commerical airline.

A few months ago, out of nowhere, and after having spent years (no exaggeration) refusing to leave her house, my mother began to greet any visitor with the question, “Can we go for a ride?” This gave us a big boost in thinking we might be able to do this thing. We just might be able to get her into the car. But then what? How were we going to get her through the airport? How would we explain it to her? And once we did, how would she react?

What about her lifelong fear of flying? Had the dementia conveniently eaten that part of her personality away? Or made it more prominent? There was no way to know.

(Oh, and did I mention that she was not responding well to prescribed sedatives? Hallucinated on one. Showed no signs of fatigue on the other. Yeah, there was that, too.)

Have I mentioned the element which gripped my thinking completely: just how was I going to assist her with toileting?

Toileting. Such an innocuous, semi-clinical word for a rather complex set of actions that are usually completed in private. By one’s own self on one’s own body. Except in Dementia*land.

That is a super small space, friends! Not alot of room there!

It seemed challenging (to say the least), but possible at the airport. But how about on the damn plane? It was all I could obsessthink about.

It turned out that all our worries were for naught. Not only did the prescribed Immodium do its duty, my mother’s internal workings cooperated in a way they hadn’t for months.

Beyond the personal hygiene and toileting success, our mother thanked us. Twice. For taking her on an adventure – literally, her words: an adventure. Who is this woman and what have you done with our mother? Oh, yes, right: dementia. A new adventure every day!   So some of our success had to do with dementia eroding away just the right parts of her addled brain. Such a strange, wonderful, perverse thing to say, to be thankful for.

But something else was at play. Something I think is of use to notice and name. Some of our success had to do with how we responded to her questions. Every time she asked a question, no matter what kind it was, even if it sounded informational or logistical in nature, we listened for the emotional question hiding just underneath. We had decided ahead of time that our answers were always going to be about affirming our relationship with her.

“Where are we going?” she asked and we would respond, “We’re going to spend a week together.”

“Why are we going to the airport?” she asked and we would respond, “So we can spend time together,” sometimes followed up by, “We are going to be sitting right next to each other on the plane.”

“What are we doing?” she asked (over and over and over again) and we would respond (over and over and over again), “We are spending some nice time together.”

The emotional question was always, “Am I alone?” and we got to answer, over and over, “You are not alone. We are here together.”

Dare I say it: it was a joy. A complicated one, to be sure, but a joy nevertheless. Each and every time. These words, and their meaning: this is the basis of my spiritual life, my theology, my comfort in the hardest of times. You are not alone. I am not alone. None of us are. There is no separation. We are in this together.

Never Alone


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