The Shifts You Don’t See Coming

It’s been a hot minute since my last post as a dementia care partner. As most care partners know life rarely slows down long enough to write about it. A lot has changed since I last shared, not all at once, but in the quiet, relentless way dementia moves through a home. Not with loud announcements, but in the thousand small ways daily life shifts until one day you look up and realize… almost everything is different.

In the beginning, life felt relatively normal following Doug’s diagnosis. He was in the early stages, still independent in many ways. The hard days were few and far between, there was rhythm and routine. We still moved through life together.

But as the disease progresses, it changes things subtly at first, and then without realizing it it’s all at once. The roles shift. The tasks multiply. The reminder builds.

These days, I find myself doing all the household chores laundry, cleaning, dishes, yard work. I’m shopping, planning, preparing, serving, and cleaning up every meal. I manage our calendar, schedule doctor appointments, track prescriptions, and ensure meds are taken. I maintain our vehicles and the home from coordianting contractors to HOA conversations. Pay the bills, handle all the legal necessities while still working as a Real Estate Broker, Executive Director for Living Well With Dementia Sisters, and as a Dementia Doula. More on that later.

And then there are the little things. The things I never thought would be mine alone.

For instance, Doug always took out the garbage and recycle for pickup day. Then it became the wrong cans taken to the curb. I would let him know and then realized telling him they’re wrong served no purpose. He’s not the Doug of years ago where that statement would have relevance. Today, they’re just words spoken without significance to him five minutes later. Then it became me waiting until after he went to bed to correct the mistake and now, I take them out.  It’s not a big task, it’s just the reminder of the disease. 

I will tell Doug his breakfast is on the counter as I watch him walk right past it into the den. So, I deliver it to him. Not a big deal. Just another quiet reminder that the disease is progressing.

He’ll pick up the broom and sweep up the birdseed I just scattered for the birds, and I have to let him. Otherwise, I become the helicopter care partner, hovering, correcting, managing every moment. And I don’t want to be that not for him, not for me. Because the truth is: he’s still trying, and that’s what matters most.

Every day now, there are new reminders. They’re rarely dramatic, but they’re constant. Words are slipping away. I’m catching myself more and more after I’ve spoken realizing that I need to simplify even more. Simple directions like “look to your left” are no longer simple. And even though I know to use fewer words, I now find myself parsing every thought before speaking, choosing each word carefully so I don’t overwhelm him.

Even the things we so often take for granted like asking, “How soon before you’re ready to eat?” are no longer straightforward. Doug might respond with a touch of humor, but never quite answers the question. Not because he’s being difficult, but because he can’t answer it the way he used to. And that, too, is a quiet reminder of how the disease progresses softly, persistently, in the everyday moments we once never had to think twice about. The ability to process the question and respond appropriately has quietly slipped away and this, too, is part of the progression.

Doug’s sentences often come out jumbled, like puzzle pieces that no longer quite fit. And yet, more often than not, I understand what he’s trying to say. I thank God for that as I fill in the blanks, I can save him the frustration, preserve his dignity, and help us both stay grounded in grace.

Most of the time, we end up sharing a smile. Sometimes we laugh. I keep it light. I never want him to feel embarrassed or ashamed. That matters too.

Even as I smile and move through the motions, I carry the quiet knowing of what it all means.
That’s the daily life of a care partner.

It’s never-ending. It’s sacred. It’s lonely. It’s full of love.

It’s doing everything you never imagined for someone you can’t imagine your life without.

Tag: #DementiaAwarenss, #dementiajourney, #realitiesofbeingacarepartner, #spousewithdementia, care partner of dementia experiences, living with dementia, love and dementia, reality of dementia, spouse with dementia