The Subtlest Loss is the Harshest

Two and a half weeks have gone by since the last entry, and J seems to have taken to the M-W-F afternoons at the Respite group. There is far less stress and angst about attending, and so I am beginning to relax about it and assume it will actually happen, barring a holiday or a snowstorm.

The flip side to this benefit is starting to become obvious, though: now that there is regular time ” off”, I really notice how much energy and attention I am paying every day when I’m “on”. The situation has grown on us so slowly, and both of us have been adapting very gradually, that I just wasn’t aware of the drain as much as I am now that there is respite in place. Ironic, that the very solution to the fatigue can highlight it at the same time.

But another example that happened last week might illustrate where the biggest drain is coming from. I’ve gone back and forth with myself, extensively, about just how to write this so that you can get the real idea of what I mean.

Here’s the background: my sister and her husband are planning a trip to Spain and Portugal for a three-week hike in June on the Camino de Santiago, staying in inns along this historical pilgrimage route. J and I have talked about this and have enjoyed hearing about the plans. Last week, while out walking, J turns to me and says, with great warmth and enthusiasm, “Don’t you want to go on that hike with them?”

Well. This remark took my breath away – it was a perfectly reasonable question, given my past interest and experience in hiking, and, all things being equal, I would have said “Yes! I do!”. But things are so very not equal now, and this question revealed just how much J does NOT see.

For one thing, she is not aware that she cannot be left alone for more than an hour or so. Another, she is not aware of how much she would obsess about my being away, from the moment the plan was made until I came back. Also, she is not aware of how much it would take to plan for people to keep her company for that period of time. And that lack of awareness of key aspects of our reality now is the real sorrow of it all. And that’s what almost physically pierced me, as I groped for what to say in response to her cheerful question.

Please hear me as I point out that missing out on this type of hike right now is NOT the worst aspect of our situation, and finding some way to go away for 3 weeks on a hiking trip is not really a solution. The worst aspect is the loss of shared reality. In fact, I’d give up all hiking for the rest of my life if it would bring back J’s ability to think straight.

So, I adapt, then coast along for a while with the strategies I figure out or learn about, then something happens to make me aware that the dementia is progressing and new strategies are needed. The last couple of weeks have been adjustment periods, and I’ve had the fatigue and fuzzy-headedness that goes along with new awareness and having to devise new strategies.

And what did I answer when she asked that cheerful question? “Well, I guess not now, we’ve got a lot on our plates….” and we continued on our walk.