Ann Bada-Crema talked candidly with Anne-Marie Demoucelle about her husband Robert’s diagnosis with Early Onset Parkinson’s disease at 45 years old, the challenges of caring for him, his transition into full-time residential care and what she learned along the way. She reminds us that humour, self-care, faith in her own ability to cope, and compassion can guide us through even the hardest chapters.

Robert’s experience reflects a particularly advanced and fast-progressing form of Parkinson’s disease. Every journey with Parkinson’s is unique. Many people live well for many years. This personal account focuses on the advanced stages of the neurodegerative disorder in the hope of helping families prepare, cope, and find strength.

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***A Sudden Shift: From Diagnosis to Decline
“Robert was diagnosed at 45, and it happened so fast. He’d deteriorate suddenly and we’d be scrambling—’Oh my goodness, what now?’ I knew his body better than my own, and kept telling doctors, ‘There’s something more here.’

I remember getting in the car with him, and he started to cry. You have to understand—before the disease advanced, Robert was strong, active, brilliant, full of life. I put my hand on his and said, ‘Honey, I’ve got you. We’ll figure this out together.’ And we did—through everything. When he passed, it was peaceful. We were all there, right to his last breath.”

***A Remarkable Life, A Remarkable Man
“When Robert donated his brain to science, they told me the Parkinson’s had spread everywhere—it was the most advanced case they had seen. I don’t know how he endured what he did for so long. I’m in awe of him. He was my greatest teacher.”

***Caring Through the Crisis
“His muscles would cramp all over, after being bedridden for two years, the DBS [Deep Brain Stimulation] helped a lot. And we kept things light. I’d joke, ‘I’m gonna turn you on now,’ and he’d smile even in stiffness. Humour was medicine for us.

We focused on joy in small moments. Even when the disease was harsh, we kept laughter alive.”

***The Invisible Weight of Caregiving
“I’ve been a caregiver since I was six—helping my mother after surgery and then after her severe stroke towards the end of her life. Later, during Robert’s illness, I was also helping to care for my sister with pancreatic cancer.

But nothing prepared me for what I saw with Robert as he endured relentless suffering for over eight years during the intense progression of the disease. He was 250 pounds [113kg] and sometimes I’d have to lift him off the floor alone. I don’t know how I did it. It felt like something greater was helping me. As painful as it was, there was something magical in it too.”

***Facing Loneliness and Finding Loyalty
“We lost many friends. I could count on one hand those who stayed. People disappear—it’s just too much for them. I’m not angry, but it’s a second loss on top of everything else.

But we had the support of our wonderful boys and Robert’s family. And some people stayed, and that meant the world. We even managed to get Robert to our son’s wedding in Quebec—ten hours of driving with the four of us and a caregiver. It was a beautiful memory.”

***The Turning Point: When Home Care Isn’t Enough
“Once, an Emergency Doctor had suggested residential care eight years before we actually made the move. I had resources to keep Robert at home longer, but when I ended up hospitalized with a serious illness due to caregiver stress. That was the wake-up call.

My boys helped me see that caring for myself wasn’t optional — it was essential. When Robert and I finally decided together that he’d go into care, it allowed me to be his wife again, not just his caregiver.”

***Adapting to Residential Care
“Robert said, ‘I think I need to go into a home.’ It was a relief physically, but it was another uncertain new beginning – a new stage of his journey with Parkinson’s. We made it feel like a hotel suite—his bed, mechanical chair, ADA washroom, all within reach. The place became homey.

He didn’t show signs of depression. In fact, he was the youngest there and became like everyone’s son. He participated in activities, engaged socially with others beyond me, and consistently looked forward to the weekly special events organised by the home. His new home allowed him the socialisation I couldn’t deliver alone from our home.

I’d bring snacks and surprises. He never knew what to expect. And because I was sleeping again, I had the energy to truly be with him. He got the best of me.”

The key to helping your loved one transition from home to assisted living is to thoroughly research the available facilities. Because Parkinson’s disease affects each person differently, it’s important for the caregivers to assess their loved one’s unique needs and interests. This assessment becomes the foundation for finding a home that can offer care and activities aligned with what was provided at home, helping to make the transition as smooth as possible.

When it came to Robert, I conducted extensive research on the various homes available. I interviewed staff, reviewed the condition of both the common areas and private living spaces, and inquired about the range of activities offered to residents. My goal was to find a home where my husband could feel as though he was living on a continual holiday for the rest of his life.

***Living With Grief, Over and Over
“I grieved Robert many times—each time he declined, each time something changed. You accept, then you grieve, then accept again. It’s exhausting. You grieve as hard as you love. And if you’ve loved deeply, you’ll grieve deeply.

Grief is a strange emotion. You grow up learning about love. No one teaches you what to do with the emotion of grief.”

***Becoming an Advocate
“I stayed involved even after he moved into care. Most staff were lovely, but I had to speak up at times to advocate not only for Robert but for the other residents. Once, he hadn’t been cared for properly, and he quietly told me he was uncomfortable. I worked with staff to make changes and explained what dignity meant for Robert. I told one aide, ‘You might be the first face he sees each day. That matters.’ And once they understood that, they cared even more.”

I spent a great deal of time educating Robert’s caregivers and nurses as it takes a very specialised approach to support someone with Parkinson’s in maintaining quality of life. This included ensuring medication was always given on time, guiding him through freezing or “parking” episodes, and many other aspects of daily care.

***Advice for Other Caregivers
“Take care of yourself—without guilt. We give and give, but if you’re not strong, you can’t help them.

And love… real love. You find out what love really means in those moments. The vows I took – I lived them! When I saw Robert at his lowest, I loved him just as much as when we first met. That’s what got us through.”

***What Patients Need Most
“Support, safety, understanding. Parkinson’s takes control of their body. People don’t always see that or understand the disease —it’s not the person acting out, it’s the disease or the drugs.

You need to know when it’s ‘them’ and when it’s the illness. They need compassion. And they need to know they’re not a burden.”

***To Those Living With Parkinson’s
“Do the best you can with what you have. Find gratitude—someone is there to help you, keep you safe, to feed you, and to support you. It may seem grim, but there’s light.

Also, be patient—with yourself and with your caregivers. It’s a two-way street. The caregiver gives up a part of their life to walk with you.”

***What This Journey Taught Me
“It humbled me. Now I appreciate even the movement of a single blade of grass. Health is everything. We take it for granted—just being able to move freely.

You can choose to be bitter, or you can choose to be better. I chose better. It brought peace. There’s already so much to carry—why add anger to the load? Letting go brings freedom.”