“We accepted we were powerless over alcohol, that our lives had become unmanageable.”

When mom was diagnosed with “Mild Cognitive Impairment” (the precursor to dementia), it wasn’t clear what that meant. To me, she had been declining for a long time – practically the whole time of the pandemic – but to her, she was always a little scattered. Missing some appointments now and then wasn’t any cause for alarm (to her).

As a side note, I am an advocate for getting the Montreal Cognitive Assessment test (the MOCA test) every year as part of a person’s regular physical exam regardless of warning signs. It’s very difficult to self-diagnose cognitive decline, and yet people who are undiagnosed are especially vulnerable to financial scams (source: AARP), and many new treatments are dependent on early detection.

Dementia vs Brilliant People

In my observation, when the brightest and historically most organized people (like my mom) get “mild cognitive impairment” (MCI), family members (like me) are very alarmed.

It feels like doctors don’t take this obvious significant decline seriously. I personally was horrified – it was clear that my mom had massive and rapid cognitive decline, but the doctors were so blasé. I didn’t understand it… how could they not want to get to the bottom of this decline?

It wasn’t until a social worker at Kaiser asked, “What are you hoping we will do?” That I realized our position: In many cases, there isn’t much to do… at least in the beginning, especially if the person is unaware of their own decline.

The 12 Steps Help

I think it was my mom who first brought up the 12 Steps in the context of dementia.

For those who are not familiar, the 12 steps are as follows:

1. We admitted we were powerless over alcohol — that our lives had become unmanageable.
2. Came to believe that a Power greater than ourselves could restore us to sanity.
3. Made a decision to turn our will and our lives over to the care of God as we understood Him.
4. Made a searching and fearless moral inventory of ourselves.
5. Admitted to God, to ourselves, and to another human being the exact nature of our wrongs.
6. Were entirely ready to have God remove all these defects of character.
7. Humbly asked Him to remove our shortcomings.
8. Made a list of all persons we had harmed, and became willing to make amends to them all.
9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
10. Continued to take personal inventory and when we were wrong promptly admitted it.
11. Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
12. Having had a spiritual awakening as the result of these Steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs.

The beauty of the 12 steps is that they bring focus from what (and who) is uncontrollable (the other person) back to ourselves: WE are powerless over [dementia]. OUR lives are unmanageable.

Like alcoholism, dementia is a family disease. It distorts the reality of everyone who encounters it.

It makes sense that the same approach works.

For caretakers and family members, we often feel like we have to try and stop every bad thing from happening – I describe it to my friends like I’m in the Smithsonian Most Valuable Ancient Glass exhibit when an earthquakeu hits, and I’ve got to spring into action to make sure nothing hits the floor.

It’s impossible.

And yet, out of love, we derail our own lives to take care of someone else. I’ve seen it over and over, especially when the person lives at home (not at a care facility).

It’s hard to even notice that our lives are being derailed because everything feels so high-stakes and necessary. Everything feels urgent. We’re not hallucinating. It actually is all those things! It’s high stakes! It’s necessary! It’s urgent!

But we also have our own lives to live. We have our own families, our own jobs, our own pets, our own households, our own finances. Very few people are able to drop everything to manage the full lives of our loved one, but that’s what seems required.

Our lives become unmanageable. Quickly. In a way that feels inevitable and necessary. We are needed. Our full selves are needed by someone else, so we drop our full selves and become the support for someone else.

At the end of 2023, my mom transitioned from “mild cognitive impairment” to “early dementia (suspected Alzheimer’s).” There were tests – so many tests! I followed along, trying to figure out how I’d score if given the same test, praying and doing my best to telepathically transmit the answers to my mom. On one hand, I really needed someone to acknowledge what was happening. On the other hand, I didn’t want mom to decline. Not only was it painful for her to see the world in increasingly confusing ways, but I knew — or I felt I knew — what would be required of me if the tests showed certain kinds of impairment.

We are powerless. This makes our lives unmanageable.

Nothing I do — and nothing you do — can control how other people experience the world. We can help, but we can’t fix.

I am sorry.

The only way to stagger through this painful time is to take care of yourself. I know it’s probably not what you want to hear. It may seem impossible. By the time you realize your life has become unmanageable, you have likely suffered heavy losses. But it’s not over for you.

The first step is just seeing that we can’t change someone’s diagnosis. We can’t fix how someone else is experiencing the world. We often can’t get what we feel is sufficient medical or emotional support for our loved one.

And that’s when our lives become unmanageable. We do our best to step in as advocates, as protectors, as organizers. We are the adults, and we do our best to show up as adults. Whether we’re doing it out of obligation or love, when dementia touches our lives and we touch back, the reality distortion field takes effect and our lives are fundamentally unmanageable because NO ONE can manage this. It’s not a personal failing — it’s literally impossible.

Give yourself the grace to accept your powerlessness over this disease. If your life is unmanageable, see it and be there for us. Because there is a better way… in step 2.