Read time 5 minutes
Archith’s Note:
Caregiving is not a role most people prepare for; it is one that life often thrusts upon us.
Will never set out to become an expert in care, yet through love, necessity, and resilience, he learned what no textbook could teach. When his wife was diagnosed with young-onset Alzheimer’s, Will’s world shifted overnight. From finance director and husband, he became cook, manager, advocate, and full-time caregiver.
Over the years, he has navigated the exhaustion, the heartbreak, and the small, fleeting victories that define the caregiving journey. His expertise was not earned in classrooms or training programs, but in the quiet hours of the night, in the repetition of daily routines, and in the unspoken language of love and patience.
This blog is more than Will’s personal account, it is a tribute to caregivers everywhere. Too often unseen, caregivers are the invisible backbone of rare and chronic illness care. They are the ones who hold families together, who absorb the weight of uncertainty, and who, through their devotion, become healing forces in their own right.
Will’s story reminds us that caregiving is not just about managing illness—it is about endurance, compassion, and the kind of love that persists even when everything else changes.
Over To Will
Rare and chronic ailments are never battles fought alone. They ripple through families, reshaping routines, relationships, and even identities. This is not just my wife’s story, it is mine too. I never imagined I would become a caregiver, but life had other plans.
When Life Changed Overnight
I was at the peak of my career, working as a finance director for a global engineering company. My wife was an accomplished civil servant, respected and admired in her field. Together, we were defined by ambition, intellect, and shared dreams.
Then came the diagnosis: young-onset Alzheimer’s.
She was still young, still vibrant, still deeply engaged in her work. But the disease forced her into early retirement, and with that, our lives shifted dramatically.
I became more than a husband. I was suddenly the cook, the cleaner, the manager of the home. My evenings were spent working after she went to bed, because the days belonged to her care. Overnight, my identity fractured into two roles: the professional who had to keep his career afloat, and the caregiver who had to hold our family together.
Balancing Work and Caregiving
By day, I was a finance director managing deadlines, budgets, and board meetings. By night, I was a caregiver managing meals, medications, and moods.
I hired caregivers to help during office hours, but emergencies didn’t wait for convenience. I often had to abandon work at a moment’s notice. There were things only I could handle.
The emotional toll was heavy. Sometimes I locked myself in a room. Other times, I just ignored the behavior. There was no real respite. I carried on regardless.
This is the reality of caregiving that rarely makes it into glossy awareness campaigns: the exhaustion, the isolation, the sense of being stretched so thin that you no longer recognize yourself.
The Good Days and the Triggers
Not every memory was painful. For a few years after diagnosis, we still enjoyed holidays and weekends away. Those moments felt like small victories. They reminded me that she was still there, still herself, even if only in fragments.
But there were also triggers that tested my patience.
Every time we went shopping, my wife would buy the same clothes again and again. And she always needed new hangers. By the end, I had wardrobes full of hangers. It was such a small thing, but it broke me inside.
That’s the strange, everyday heartbreak of Alzheimer’s. It’s not always the big moments that undo you. Sometimes it’s the repetition, the absurdities, the reminders that the person you love is slipping away in increments.
The Struggle of Self-Care
People often told me, “Take care of yourself.” But that was the hardest part.
I tried. I went on holidays alone, but they were so lonely I regretted going. I joined a support group, but I’d always get calls to rush home. Once, the police were even involved. I ate out a lot, and my health deteriorated.
The truth is, self-care often feels impossible when someone else’s needs come first. The irony is cruel: the more you give, the more depleted you become. And yet, stepping away feels like betrayal.
Lessons I Learned as a Caregiver
Despite the hardships, I carry forward some lessons for others walking the same path:
- Join a support group: even if it’s hard to attend regularly.
- Prioritize self-care: exercise, eat well, and rest when you can.
- Talk to like-minded people: connection eases the isolation.
- Practice gratitude and forgiveness: for yourself and your loved one.
Most of all, I learned to find things to be grateful for. And to forgive myself, and my wife, for the things that went wrong. Gratitude and forgiveness are not luxuries for caregivers. They are survival tools.
Why I Share My Story
Caregiving for someone with Alzheimer’s, or any chronic illness, is not just about medical routines. It’s about love, endurance, and the hidden costs of compassion.
Too often, caregivers are invisible. Our sacrifices are unrecorded, our struggles unacknowledged. Yet without us, the fragile ecosystem of chronic illness care would collapse.
By sharing my story, I hope to offer not just a glimpse into my life, but a mirror for countless others who are walking the same path in silence.
A Story of Love, Not Just Loss
At its core, this is not just a story about Alzheimer’s. It is a story about love.
Love that cooks meals late at night. Love that abandons board meetings to rush home. Love that endures the frustration of endless hangers. Love that forgives, again and again.
Alzheimer’s may have taken much from us, but it could not erase the devotion that bound us together.
Closing Reflection
Rare and chronic ailments are not the kind of diseases that can be managed alone. They demand a network of care, a reservoir of patience, and a willingness to keep going even when the road feels endless.
My journey is not polished or perfect, it is raw, messy, and painfully real. And that is precisely why it matters.
If you are a caregiver reading this, know that your story matters too. You are not invisible. You are not alone.
DISCLAIMER
This blog reflects personal experiences and viewpoints. It is not a substitute for professional medical advice.