Finding a new normal when a parent has dementia

There's usually a moment. Not the diagnosis — something smaller and later.

It might be the Thanksgiving your mother didn't cook. For thirty years she ran that kitchen like a general, and this year she sat in the good chair while everyone else found things to do with their hands. Or it's the afternoon your father asked you the same question four times in twenty minutes and you heard your own voice go tight on the fourth answer, and you sat in the car afterward feeling like the worst person alive.

That moment is when most families realize they aren't waiting for things to go back to how they were.

Almost everyone says the same thing at that point: I don't think we'll ever feel normal again.

It's an honest thing to feel. It's also, it turns out, not quite how it goes.

The old normal isn't the goal

Families who find their footing tend to have one thing in common, and it isn't patience, or money, or living closer. It's that at some point they stopped trying to restore the way things used to be and started building something different that actually works.

That sounds like giving up. It isn't. It's the opposite — it's the thing that makes the next two years livable instead of exhausting.

Trying to hold the old normal in place is enormous work, and most of it is invisible. You correct. You quiz — Dad, you know who I am, don't you? You keep putting the checkbook back in front of someone who can't balance it anymore, because the day you stop feels like a door closing. You keep hosting the holiday the way she always hosted it, so she can see nothing's changed, except she can't see it, and you're the one carrying fourteen people's dinner.

None of that is foolish. It's love doing the only thing it knows how to do. But it costs, and it tends to be the families burning the most energy on the old normal who are the most worn down.

The new normal is smaller and stranger and it works. Thanksgiving moves to your house, and she comes for the afternoon rather than the whole day, and she snaps the beans because her hands still know beans. He asks the same question four times and you answer it four times, in the same voice, because the question isn't really about the answer — it's about whether you're still there. The checkbook moves quietly to your brother and nobody makes a ceremony of it.

Nothing about that is the way it was. It's still a good afternoon.

Nobody does this in one go

Here is the part that would have helped most families to hear early: finding a new normal isn't a decision you make once. You'll make it several times, because the ground keeps shifting, and each time you'll have to let go of something you'd only just gotten used to.

You'll build a routine that works beautifully for four months and then stops working. The evening walk that settled everyone gets too long. The shower on Tuesdays becomes a fight. You'll feel like you're back at the start.

You're not. You just have to build the next one — and by then you're much better at building.

It helps enormously to lower the bar on what a decision has to be. Most of what you decide in dementia care doesn't need to be right for the next five years. It needs to be good enough for the next few months, and you can revise it when it stops fitting. Families who wait for the correct answer tend to wait until a crisis picks one for them, and crisis decisions are the ones people regret.

What you're actually grieving

One reason this is so disorienting is that it's grief with nowhere to put itself.

When someone dies, everyone knows what to say. There's a casserole, a card, a phone call. When someone is still here but not entirely — when your mother is in the room and you are already missing her — people don't have a script for that, so mostly they say nothing, and you're left wondering why you feel this wrecked about someone who's sitting right there asking about the weather.

That feeling has a name and a shape and it's extremely common. It isn't disloyalty, and it isn't you being dramatic. You can grieve someone and enjoy their company in the same afternoon. Most families do. It stops feeling like a contradiction eventually.

A few things worth knowing early

You will lose your patience. Everyone does, including the people who seem serene about all this, and including the professionals. Losing it doesn't undo the two years of good you've done.

Being consistent matters more than being clever. Whatever you've worked out that helps — the same chair, the same order, the same voice — is worth more than any new technique.

And take the wins when they come. A good hour is a good hour. It counts even though it didn't last, and even though tomorrow might be harder. You're allowed to have enjoyed it.

The new normal isn't the life anyone would have chosen. But a great many families do find their way to something steady, and they say the same thing afterward: it came in pieces, it came later than they wanted, and it came from letting the old version go a little sooner than felt right.

Live and Stay is a licensed non-medical Home Care Organization serving Northern California since 2008. Formerly Geriatric Care Solution.