Dementia and Unexpected Life Lessons

I am surrounded by dementia. I loathe it with a silent hostility so consuming and unfamiliar that at times I barely recognize myself — yet I feel thankful for the life lessons that have come with the cruelty. It’s all very confusing.

Origins and implications

My hatred is of simple origin. Mom and Steve don’t deserve Lewy Body and Alzheimer’s. They should be enjoying life not tiny bits and pieces of it when they can.

Like anyone else, they worked hard to build their respective lives. They raised and supported families. Saved for their twilight the best they could. Became grandparents. But when it came time to enjoy the proverbial fruits of their labor, they were robbed. Mom and Steve’s interests and dreams were unceremoniously claimed as just another dementia casualty.

While the origin of my abhorrence is simple, the ripple effects are far from it. In contrast, they’re emotionally complex and reach every shore of our life — continuously.

Reconciling my guttural desire to care and the pride I take in it, with the shame of thinking I don’t want to do it anymore is complicated. The intermittent desire for our pre-teen kids to have free reign of their house, without constant worries about volume or their level of silliness, brings with it a brand of guilt that is so multi-sided that I don’t even know where to start sorting through it. The subtle but palpable pressure to make the 3 hour drive to see Mom in person in the dead of winter is unrelenting. These are the ripples.

With all of this though, there has been some goodness too. In the form of life lessons that I wouldn’t have learned to the same extent if it weren’t for dementia. As deep as my disdain runs for our situation, it hasn’t drowned out this beautiful pocket of gratitude.

So here are a few of the life lessons that I’m most thankful for.

Persistence

Whether I’m talking about Steve’s Lewy Body or Mom’s Alzheimer’s, the context is the same. Both are one-way traffic — things are only going to get worse. At what pace and when are the only open questions.

Waking up each day knowing our job is to help them stave it off, and enjoy the day in the process, is a daunting task. A repetitive duty that requires a pure form of persistence that I wasn’t necessarily familiar with prior to becoming a caregiver.

What I was familiar with prior to this experience, is what I now think of as standard persistence. Set a goal, make a plan to achieve that goal, and persevere through all the ups and downs in executing the plan until you achieve the goal. Standard persistence.

The persistence that caring for a loved one living with dementia requires is different. It’s circular instead of linear. It’s about executing the plan in the face of current and future loss — with no light of glory and success at the end of the tunnel.

Yet we do it anyway because we want to, it’s the right thing to do — and there is comfort in it. There’s comfort in the act of being persistent itself. When our heads hit the pillow at night and we’re reflecting on the failure of the day, there’s comfort knowing that we’ll try again tomorrow.

Presence

Much of my caregiving life is characterized by feelings of failure. This doesn’t mean I am a failure or that I generally feel like a failure, it just means feelings of failure are a big part of my caregiving day-to-day. Nuanced, I know.

But here’s the thing. I’ve learned that my primary job as a caregiver is to support Mom and Steve so they can live their best life in spite of the challenges unjustly heaped upon them by their respective forms of dementia.

As I’ve written before, the scoreboard that tells us how we’re doing are their smiles and body language and laughs. Verbal communication is a challenge, so we need to rely on other signals. Smiles, body language and eye contact are most common for us.

And when we get the smiles or the laughs or the longer stints of eye contact, they’re quick and temporary. If we’re not present mentally, we miss them. So I’ve learned to force myself to be present when I’m with Mom and Steve. I work hard to elicit those smiles and I deserve to share in them. They may be brief but they are glorious.

The bonus here is that this life lesson transcends caregiving for me. Applying my newfound skill (thanks dementia) in all other aspects of my life has made me a better husband (Lindsay might disagree, I’ll have to ask), father, friend and co-worker.

Power of Smile

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” — Thich Nhat Hanh

Dementia has shown me firsthand the power of a smile. Whether it’s Steve flashing a smile to let us know to put a point on the scoreboard on a given day, Mom’s smirk at one of my crappy jokes or Lindsay smiling at me in a dark moment — there’s an alluring property to it.

Not a magic elixir but a vital source of connection in the disconnected world of dementia. And like the other life lessons I’ve mentioned, I’ll be applying this one to my life long after my caregiving duties have come to an end.

Dementia and life lessons

I wish I wasn’t a caregiver. That would mean that Mom and Steve aren’t living with Alzheimer’s and Lewy Body. But I also can’t imagine my life without the knowledge of these life lessons.

It comes down to the difference between knowing of something, or thinking you know it, and truly experiencing it. There’s a subtle but critical difference between the two.

Persistence. Presence. Power of Smile.

Learning these lessons have made me a better version of myself.

It’s all very confusing.