{"id":2026,"date":"2025-06-24T23:10:24","date_gmt":"2025-06-24T21:10:24","guid":{"rendered":"https:\/\/demoucelle.sites-stag.agency\/uncategorized\/love-laughter-and-letting-go-navigating-advanced-parkinsons\/"},"modified":"2026-06-18T12:41:01","modified_gmt":"2026-06-18T10:41:01","slug":"lamour-le-rire-et-lart-de-lacher-prise-vivre-avec-la-maladie-de-parkinson-a-un-stade-avance","status":"publish","type":"post","link":"https:\/\/demoucelle.sites-stag.agency\/fr\/parkinsons\/carer-testimonies\/love-laughter-and-letting-go-navigating-advanced-parkinsons\/","title":{"rendered":"Amour, rire et acceptation : vivre avec la maladie de Parkinson \u00e0 un stade avanc\u00e9"},"content":{"rendered":"\n
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<\/a>Ann Bada-Crema talked candidly with Anne-Marie Demoucelle about her husband Robert\u2019s diagnosis with Early Onset Parkinson\u2019s 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.<\/strong><\/p>\n\n\n\n

Robert\u2019s experience reflects a particularly advanced and fast-progressing form of Parkinson\u2019s disease. Every journey with Parkinson\u2019s 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.<\/em><\/p>\n\n\n\n

———–<\/p>\n\n\n\n

***<\/span>A Sudden Shift: From Diagnosis to Decline\n<\/strong>\u201cRobert was diagnosed at 45, and it happened so fast. He\u2019d deteriorate suddenly and we\u2019d be scrambling\u2014’Oh my goodness, what now?’ I knew his body better than my own, and kept telling doctors, ‘There\u2019s something more here.’<\/p>\n\n\n\n

\"-<\/figure>\n\n\n\n

<\/a>I remember getting in the car with him, and he started to cry. You have to understand\u2014before the disease advanced, Robert was strong, active, brilliant, full of life. I put my hand on his and said, ‘Honey, I\u2019ve got you. We\u2019ll figure this out together.’ And we did\u2014through everything. When he passed, it was peaceful. We were all there, right to his last breath.\u201d<\/p>\n\n\n\n

***<\/span>A Remarkable Life, A Remarkable Man<\/strong>\n\u201cWhen Robert donated his brain to science, they told me the Parkinson\u2019s had spread everywhere\u2014it was the most advanced case they had seen. I don’t know how he endured what he did for so long. I\u2019m in awe of him. He was my greatest teacher.\u201d<\/p>\n\n\n\n

***<\/span>Caring Through the Crisis<\/strong>\n\u201cHis 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\u2019d joke, \u2018I\u2019m gonna turn you on now,\u2019 and he\u2019d smile even in stiffness. Humour was medicine for us.<\/p>\n\n\n\n

We focused on joy in small moments. Even when the disease was harsh, we kept laughter alive.\u201d<\/p>\n\n\n\n

***<\/span>The Invisible Weight of Caregiving<\/strong>\n\u201cI\u2019ve been a caregiver since I was six\u2014helping my mother after surgery and then after her severe stroke towards the end of her life. Later, during Robert\u2019s illness, I was also helping to care for my sister with pancreatic cancer.<\/p>\n\n\n\n

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\u2019d have to lift him off the floor alone. I don\u2019t 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.\u201d<\/p>\n\n\n\n

***<\/span>Facing Loneliness and Finding Loyalty<\/strong>\n\u201cWe lost many friends. I could count on one hand those who stayed. People disappear\u2014it\u2019s just too much for them. I\u2019m not angry, but it\u2019s a second loss on top of everything else.<\/p>\n\n\n\n

But we had the support of our wonderful boys and Robert\u2019s family. And some people stayed, and that meant the world. We even managed to get Robert to our son\u2019s wedding in Quebec\u2014ten hours of driving with the four of us and a caregiver. It was a beautiful memory.\u201d<\/p>\n\n\n\n

***<\/span>The Turning Point: When Home Care Isn\u2019t Enough<\/strong>\n\u201cOnce, 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.<\/p>\n\n\n\n

My boys helped me see that caring for myself wasn\u2019t optional \u2014 it was essential. When Robert and I finally decided together that he\u2019d go into care, it allowed me to be his wife again, not just his caregiver.\u201d<\/p>\n\n\n\n

***<\/span>Adapting to Residential Care<\/strong>\n\u201cRobert said, \u2018I think I need to go into a home.\u2019 It was a relief physically, but it was another uncertain new beginning \u2013 a new stage of his journey with Parkinson\u2019s. We made it feel like a hotel suite\u2014his bed, mechanical chair, ADA washroom, all within reach. The place became homey.<\/p>\n\n\n\n

He didn\u2019t show signs of depression. In fact, he was the youngest there and became like everyone\u2019s 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\u2019t deliver alone from our home.<\/p>\n\n\n\n

I\u2019d bring snacks and surprises. He never knew what to expect. And because I was sleeping again, I had the energy to truly\u00a0be with him<\/em>. He got the best of me.\u201d<\/p>\n\n\n\n

The key to helping your loved one transition from home to assisted living is to thoroughly research the available facilities. Because Parkinson\u2019s disease affects each person differently, it\u2019s important for the caregivers to assess their loved one\u2019s 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.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

***<\/span>Living With Grief, Over and Over<\/strong>\n\u201cI grieved Robert many times\u2014each time he declined, each time something changed. You accept, then you grieve, then accept again. It\u2019s exhausting. You grieve as hard as you love. And if you\u2019ve loved deeply, you\u2019ll grieve deeply.<\/p>\n\n\n\n

Grief is a strange emotion. You grow up learning about love. No one teaches you what to do with the emotion of grief.\u201d<\/p>\n\n\n\n

***<\/span>Becoming an Advocate<\/strong>\n\u201cI 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\u2019t 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, \u2018You might be the first face he sees each day. That matters.\u2019 And once they understood that, they cared even more.\u201d<\/p>\n\n\n\n

I spent a great deal of time educating Robert\u2019s caregivers and nurses as it takes a very specialised approach to support someone with Parkinson\u2019s in maintaining quality of life. This included ensuring medication was always given on time, guiding him through freezing or \u201cparking\u201d episodes, and many other aspects of daily care.<\/p>\n\n\n\n

***<\/span><\/strong>Advice for Other Caregivers<\/strong>\n\u201cTake care of yourself\u2014without guilt<\/em>. We give and give, but if you’re not strong, you can\u2019t help them.<\/p>\n\n\n\n

And love… real love. You find out what love really means in those moments. The vows I took \u2013 I lived<\/em> them! When I saw Robert at his lowest, I loved him just as much as when we first met. That\u2019s what got us through.\u201d\n\n***<\/span>What Patients Need Most<\/strong>\n\u201cSupport, safety, understanding. Parkinson\u2019s takes control of their body. People don\u2019t always see that or understand the disease \u2014it\u2019s not the person acting out, it\u2019s the disease or the drugs.\n\nYou need to know when it\u2019s \u2018them\u2019 and when it\u2019s the illness. They need compassion. And they need to know they\u2019re not a burden.\u201d<\/p>\n\n\n\n

***<\/span>To Those Living With Parkinson\u2019s<\/strong>\n\u201cDo the best you can with what you have. Find gratitude\u2014someone is there to help you, keep you safe, to feed you, and to support you. It may seem grim, but there\u2019s light.<\/p>\n\n\n\n

Also, be patient\u2014with yourself and with your caregivers. It\u2019s a two-way street. The caregiver gives up a part of their life to walk with you.\u201d<\/p>\n\n\n\n

***<\/span>What This Journey Taught Me<\/strong>\n\u201cIt humbled me. Now I appreciate even the movement of a single blade of grass. Health is everything. We take it for granted\u2014just being able to move freely.<\/p>\n\n\n\n

You can choose to be bitter, or you can choose to be better. I chose better. It brought peace. There\u2019s already so much to carry\u2014why add anger to the load? Letting go brings freedom.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Ann Bada-Crema nous livre un t\u00e9moignage \u00e9mouvant sur l'amour et la r\u00e9silience, apr\u00e8s le diagnostic de la maladie de Parkinson de son mari Robert, puis son placement en \u00e9tablissement de soins \u00e0 temps plein.<\/p>","protected":false},"author":1,"featured_media":2027,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[26],"tags":[],"class_list":["post-2026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-carer-testimonies"],"_links":{"self":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/2026","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/comments?post=2026"}],"version-history":[{"count":1,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/2026\/revisions"}],"predecessor-version":[{"id":2029,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/2026\/revisions\/2029"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/media\/2027"}],"wp:attachment":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/media?parent=2026"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/categories?post=2026"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/tags?post=2026"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}