Dementia Days

Sigrun is happy.

For years now, I have explored a multitude of avenues to increase the joy in my mother’s life. In the earlier days, we went shopping – always a winner – we went out to meals, we redecorated her apartment, I have taken her to all the various doctors who would make her feel better. Then, in the later stages, we would sit and chat more, laugh at our bodily functions, I would smile at her to get her to smile back.

And always the underlying discontent, sadness, and disappointment with a life handicapped by Alzheimer Disease would come to the surface again. It was never very far, simmering below the surface, covered up by both my mother and me in a tacit agreement not to dwell on something neither of us could change.

Then, in the last few weeks, my mother has taken a turn – maybe for the worse within the disease, but certainly for the better within her disposition. No, disposition is the wrong word. It is too shallow. Her change goes much deeper. It seems that Sigrun, my mother, has let go of all that discontent, all the worries of life with or without Alzheimer’s, and down to her core, has decided to be happy.

What I do or don’t do doesn’t matter as much anymore (and probably hasn’t mattered nearly as much as I often led myself to believe). My mother is independently, deeply, pervasively happy.

I am not sure whether this is a phase within Alzheimer’s, a step towards the inevitable end, or a unique moment in time for Sigrun. And it really isn’t all that important to define it. As if to inspire me to stop worrying, Sigrun’s happiness is a gift to both her and me.

As a mother, I am tempted to draw many parallels between my own mother’s mental (and physical) decline, and my two toddlers’ burgeoning intellect, their emotional development, and their growing independence. So with this new found treasure of joy in Sigrun’s life, I am considering my toddlers’ complaints, whines, and worries. Somehow, my mother found the strength (or a loophole in the terrible contract of the disease?)  to let go of that dependence on others for ones own emotions. And that forced me to reevaluate my necessity as “joy bringer” in her life and in my children’s lives.

My husband has hinted at this for many years, and sweet as he is, has never given up nudging me in the right direction. But we all know, it sometimes takes an unpredictable, unique event to break us out of our routines and habits. And so, I feel energized to inspire my children to become more self-reliant, to learn to see themselves as the person in control of their emotions. (And, trust me, I know they are still little – 2.5 and 4.5 years now. I also know, that much of their whining isn’t due to their inability to figure out their problems. Much rather it is due to the fact that their mother has been hovering and waiting to solve any issue that arises – partly in a misguided desire to help them, partly for the satisfaction it brings to be able to solve somebody else’s problems.)

And, as my mother has learned in her 70s and in the midst of Alzheimer’s, I, too, need to wonder how much I still look to other people to determine my emotional state. As a wife, mother, daughter, sister, contractor, part-time student, I sometimes have a hard time finding Alana – that’s me – unencumbered by any role, and thus treat myself well enough to find my happiness within myself.

How often do we let somebody else ruin our day with some inconsiderate deed? The person who steals our parking spot; the stressed customer service consultant who blames you for whatever issue you called them about; the tired spouse who didn’t choose his words carefully enough to explain one of his needs. Most of the time none of these people intentionally mean to hurt you. And given a rational response, they are willing to re-approach the situation.

So, with the gift of Sigrun’s happiness, my new determination to be strong (and not just helpful) for my children, and a resolution to be good to myself (and thus to the people around me), I declare this year (and hopefully many to come) my year of happiness. (Anybody who wants to participate is cordially invited .

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!