Dementia Days

So, that dreaded ghost of dementia pops up in my family’s midst, and I throw myself headlong into all the logistics that come with it. I take care of living arrangements, doctors visits, safety concerns, food needs, financial matters, and so on and so on, and suddenly I have a moment with nothing to do. I’ve just spent days, weeks, months, even years, adjusting to the new reality, thinking about everybody but myself. And now, there’s me. And chances are, I have this moment right after I realize I forgot something.

And there it is, not a ghost in the room, but more like an elephant: Am I showing the beginning signs of dementia? Have people been politely tolerating my lapses?

Over the past days, weeks, months, years, I have scanned my memories of the past, and there were so many “oh” “ah” and “aha” moments, realizing how long dementia had already been a steady companion to my mother. The continuous searching for keys and glasses, the missed appointments, the oddly addressed envelopes, the strangely stored possessions, the decreasing ability to communicate in a true dialogue – many of these things having been going on since I was a rather intolerant teenager who was more concerned about having her own voice heard.

So now, in this moment after I’ve misplaced my keys or forgot about my sons play-date or just monologue-ed at my husband for 10 minutes straight (he truly is an exceptional person!), I begin to wonder… If Sigrun’s dementia started long ago, maybe mine is starting now? It does run in families, and I’ve found myself to be quite forgetful lately…

It is much easier letting go of stigmas and being understanding and compassionate with your loved ones dementia. When I consider that I myself may be developing dementia, I find myself right back where I was with the fear, dread, and lack of understanding about the disease.

The next step is to contemplate the consequences: So what if I have dementia? If it’s ok for my mother, why should it not be ok for me? My sister Fiona reminds me frequently that it is, after all, a race between the mind and the body. One of them is going to give before the other. Which would I prefer: To be in pain as my body bids farewell, or to feel somewhat confused, but mostly pain free as my mind takes a permanent vacation? In the end, much of the sorrow of dementia resides with the family and friends, and not with the patient. And, if I were to develop dementia, maybe I could prepare my family by letting them know that I’m ok with this new path in life…

Then again, maybe I’m just sleep deprived and hyper-sensitized to the issue, and need to put things in perspective:

When I had kids, I had to become a grownup. Now, that my father has passed away and my mother is barely there, I am becoming the “older” generation. Nobody ahead of me anymore. I am on deck – and I don’t even know much about sports!

Ultimately, I need to realize that there are many reasons to be forgetful and I seem to find myself in the eye of the perfect storm:

I am the mother of two small children (Sleep? What’s that?). I am caring for somebody with Alzheimer’s (not a bad reason to be a bit paranoid). I am about to turn 40 (Time to take stock!), and I am trying to be a decent wife while working from home. So, there’s a lot on my plate. And my guess is that there’s a lot on most of your plates.

Let’s be forgetful together and know that it could be for any number of reasons!