It’s hard to believe that three years have passed since my husband Geert was diagnosed with young-onset dementia. Over time, our lives have gradually adapted to this reality. Together, we’ve gone through the process of accepting the diagnosis, grieving what we’ve lost, and finding joy in the things we can still do together. Life has felt steady, different, of course, but manageable. We focused on living as fully as possible without thinking too much about what the future might take away. And then, at the end of August, everything shifted again. Geert was struck by a car during one of his training runs for the Lisbon Marathon. The driver failed to stop at a crossing, and in an instant, Geert was left with multiple fractures in his foot.
The marathon dream was gone, and so was the rhythm of our daily life. Suddenly, everything had to be rearranged. As his caregiver, I quickly realised the extra challenge: instructions weren’t always easy for Geert to process or remember. “Don’t put weight on your foot, hop on the other leg, we have to go to the ER”, simple things became complicated. We spent a full day in the emergency department, waiting, undergoing tests, forgetting to eat because I didn’t want to miss the diagnosis. Thankfully, no surgery was needed. But we returned home with a heavy plaster cast and strict rules: no weight-bearing, no movement. I had already taken over some of the things Geert could no longer manage, but suddenly I had to take on almost everything.
Geert was no longer mobile at all. That was just the beginning. I had to reorganise our home to make it liveable: borrowing a wheelchair, arranging a bed in the living room, ordering a toilet chair and urinal, finding crutches, and calling in home nursing support. One piece of advice I’m grateful for was this: let others take care of the “medical” side so you can remain the partner. I followed it. A home nurse now visits daily for hygiene and injections, and physiotherapy keeps Geert’s muscles active. Family and friends have stepped in with visits, cards and encouragement. Still, being a caregiver is a 24/7 responsibility. The only way to sustain it is to share the load. Even so, after four weeks of bed rest, our days are filled with hospital check-ups, routines, and trying to keep life as normal as possible. I encourage Geert to continue the activities he can still do—except walking and running, of course—so he doesn’t lose those abilities. I know too well that once they’re gone, they may not return.
Alongside this, I carve out small spaces for myself: joining several Alzheimer Europe meetings online, cherishing the visit of my daughter and newborn granddaughter from abroad, who were also seeking support, creating ceramic art with clay. These things give me the mental energy I need. Now, we’re slowly adjusting again, and I look forward to the day Geert will be able to walk, maybe even run, again. It won’t be easy, but hope is what keeps us moving forward. And who knows? Perhaps there’s still another marathon waiting for him, and a walking or hiking holiday for us.