TODAY IS THE FOURTH ANNIVERSARY OF MY WIFE’S STROKE. My memory is especially fresh since I’ve been re-writing and re-designing The Lifted Veil – my other blog which is more of a book now, written in narrative form. It’s still difficult to write and even read about those early days without feeling some of the terror and despair I felt then.

But that was then and this is now. With each passing year, we find ourselves settling into the patterns of daily life. There’s some comfort in the familiarity of the day-to-day, but also the awareness that our daily struggles are likely to remain our daily struggles.

And this has been a year of progress.  Mary Elizabeth continues her speech and language therapy, and as she’s gained confidence, she’s become much more verbal. Her mechanical speech, although laborious at times, has also improved significantly.

That confidence has spread to other areas. She has gone out socially a few times without me (or her health aide) to be with friends or to see a movie. She enjoys the independence and has also made some real progress towards her goal of driving again.

While I’m thrilled for Mary Elizabeth and share her exultation in doing more, it also makes me uncomfortable and not a little nervous. I’ve spent the better part of the last four years taking care of her every need. I’ve tried so hard to look at things from her perspective and to understand what she wants and to anticipate what she needs. Most of the time, it’s been enough, but as she continues to evolve, I find it more challenging to stay in control.

Because control is really what we’re talking about.

As any caregiver will tell you, staying in control is the chief priority. With a strong handle on things, we can decrease the likelihood of bad things (like accidents or illness) happening, and encourage the good things as well. But every time that control is threatened – even by the caregivee – we feel challenged.

So it’s perfectly natural to want to protect Mary Elizabeth from harm and to keep her safe, but am I holding her back? I feel like I really know what’s possible and what’s not; what presents a danger or risk, and what’s safe.  But what if I’m being overly-cautious and hindering Mary Elizabeth’s progress?

To put it more plainly: as caregivers, we want to prevent bad things from upsetting the status quo. But what about when good things threaten to upset the status quo? And there’s the selfish thought which creeps in –namely that if something bad does indeed happen, who winds up having to pick up the pieces?  Me. So while saying no certainly can prevent bad things from happening, if I’m being honest, it also makes things easier for me.

But my job isn’t to make things easier for me – it’s to care for and support Mary Elizabeth (and our kids) and if that means letting go a little and doing things that might present bigger risks, then I need to adjust.  Again.

As a parent, I think making the decisions seems much easier.  We know better. We’re the parents. But as a caregiver of an adult – my wife – it’s not so easy. It’s clear (to me at least) that I have authority over my kids.  What about when you find yourself in a position of authority over your spouse? When she was in a coma, that was pretty easy.  But now that she’s becoming more active, and seeking more independence, well that’s another story.

Like anything, I’m sure there’s a middle ground where I can take care of the things that Mary Elizabeth can’t do, and work with her to figure out what she can do. I just have to let go a little bit and think before I say no, and start saying maybe, or even yes.

But I do worry.