For Barend (78), his life changed drastically when his wife Linda (74) was diagnosed with Alzheimer’s four years ago. Since then, he has not only been her husband, but also her caregiver. “It is a tough task,” he says, “you see your wife, with whom you have shared your whole life, slowly changing. It takes a lot of patience and emotional strength to support her, especially when she is confused or forgets things.”
Barend soon noticed that caring for Linda demanded a lot from him. “I always wanted to be there for her, but it started to break me down. I felt lonely and sometimes panicked because of the responsibility I was given. It was hard to admit that I needed help.”
Fortunately, he came into contact with Informal Care & Morean organization that supports informal caregivers. Here he met informal care consultant Jessica, who, according to Barend, has been an enormous support. “Jessica has been a listening ear for me. From the first conversation I felt understood. She made me feel like I wasn’t alone. Sometimes I just needed to vent, and that was always possible with her.”
Jessica not only offered Barend emotional support, but also pointed out the different situations discussion groups in courses who organizes Informal Care & More. “I didn’t even realize how many opportunities there were for informal caregivers like me,” Barend admits, “thanks to Jessica I was able to participate in discussion groups with other informal caregivers. It was so nice to exchange experiences and learn from each other. You discover that you are not the only one struggling with this.”
The courses have also brought him a lot. “I took a course on dealing with dementia, which helped me better understand what is happening to Linda and how I can better respond to it. It has given me peace and confidence in my role as an informal caregiver.”
Barend is grateful for the help he has received. “Without the support of Jessica and Mantelzorg & Meer, I probably wouldn’t have made it. They showed me that it’s okay to ask for help, and that there are always people there to help you. Thanks to them I can still be there with love for Linda, without losing myself.”
*Barend and Linda are not the real names; image for illustration.
(Partner contribution: Municipality of Aalsmeer)
15
Barend’s Journey: Navigating Love and Alzheimer’s
At the ripe age of 78, you’d expect Barend to be basking in the sun, perhaps sipping a Piña Colada while reminiscing about the good old days—like that one time he almost made it through a whole game of golf without losing a ball! But life took an unexpected twist when his beloved wife Linda, only 74, was diagnosed with Alzheimer’s four years ago. And suddenly, Barend’s retirement looks less like a luxury vacation and more like a never-ending episode of “Survivor: Caregiver Edition.”
The Raw Reality of Caregiving
“It is a tough task,” he admits, a sentiment that surely resonates with anyone who’s tried explaining the rules of Monopoly to a six-year-old. Watching your life partner slowly change, like that annoying character in a soap opera who just won’t leave, is both heart-wrenching and mentally draining. Barend describes the emotional rollercoaster he’s been on—trying to be the stalwart tower of strength amidst the confusion, wandering thoughts, and stubborn forgetfulness of his wife. Patience? An understatement. We’re talking about the need for an Olympic-level endure-athon!
And here’s the kicker: the very act of caring began to chip away at Barend’s own well-being. “I felt lonely,” he says, “and sometimes panicked because of the responsibility I was given.” Like trying to carry a stack of plates while balancing on one leg—tricky, and one wrong move could lead to a messy disaster. Pride is a tricky beast, too; admitting you need help can feel like suggesting that chocolate really is better than broccoli.
A Lifeline in the Form of Jessica
Enter Informal Care & More, the superhero organization swooping in to rescue Barend from his spiraling plight. It was here that he met Jessica, an informal care consultant who, not unlike a crafty magician, revealed that Barend wasn’t alone. “From the first conversation, I felt understood. Sometimes, I just needed to vent, and that was always possible with her.” There you have it, folks—a listening ear! Who needs therapy when you could just have a friendly chat with someone who gets it?
But Jessica was more than his emotional support; she introduced him to a treasure trove of resources, including discussion groups and courses! “I didn’t even realize how many opportunities there were for informal caregivers like me,” Barend reflects, sounding more surprised than a kid seeing a rabbit pulled out of a hat. All those moments of isolation turned into camaraderie with fellow caregivers sharing tales of trials and tribulations. Turns out, sharing experiences is cheaper than therapy and involves far less crying!
Knowledge is Power
One course on dealing with dementia later, and Barend was armed with not just understanding, but peace and confidence. It’s like being given the ultimate cheat codes to a video game where the stakes are higher than a game of poker in Vegas. “It has given me peace and confidence in my role as an informal caregiver.” The man went from caregiver to caregiver extraordinaire, all thanks to a little education!
Barend is now a walking testament that asking for help doesn’t make you weak; it makes you smart. “Without the support of Jessica and Mantelzorg & Meer, I probably wouldn’t have made it. They showed me that it’s okay to ask for help… Thanks to them, I can still be there with love for Linda, without losing myself.” Now that’s the kind of love story that has the world thinking, “Maybe caring isn’t all doom and gloom!”
*Barend and Linda are not the real names; picture for illustration purposes only. And no, that’s not their pet parrot photobombing the picture as per usual.
(Partner contribution: Municipality of Aalsmeer)
*the magic of human connection in moments of despair.*
**Interview with Barend: Navigating Love and Alzheimer’s**
**Interviewer:** Thank you for joining us today, Barend. Your journey sounds incredibly challenging. Can you share what your initial reaction was when Linda was diagnosed with Alzheimer’s?
**Barend:** Thank you for having me. Honestly, it felt like a thunderbolt out of nowhere. One moment, we were enjoying our lives together, and the next, I found myself facing a reality that began to feel disorienting. Watching Linda change has been heartbreaking; the woman I’ve shared my life with is slowly fading in front of my eyes.
**Interviewer:** It sounds deeply painful. As a caregiver, what aspects of this journey have been the hardest for you?
**Barend:** The emotional toll is immense. At times, I felt completely overwhelmed, like carrying a mountain on my shoulders. I experienced feelings of loneliness and panic, especially when I realized the responsibility of caring for her was all on me. It’s difficult to admit you need help, but I learned the hard way that I couldn’t do it alone.
**Interviewer:** That’s a very honest reflection, Barend. Fortunately, you found support from Informal Care & More and Jessica. How did that change things for you?
**Barend:** Jessica has been a lifeline for me. Just talking with her made a world of difference. She helped me realize that I wasn’t alone in this journey. It was like finding the right key to unlock a door I didn’t even know existed.
**Interviewer:** Can you speak more about the programs and discussion groups you participated in?
**Barend:** Absolutely. Through Jessica, I discovered a community of fellow caregivers. The discussion groups were particularly enlightening—sharing experiences, learning from one another, and realizing that my struggles are common. It was comforting to connect with others who are going through similar challenges.
**Interviewer:** And you took part in courses on dementia as well. How beneficial was that for your role as a caregiver?
**Barend:** Those courses were incredibly valuable. They taught me about the nuances of dementia, which helped me to better understand what Linda is experiencing. It has given me the tools and confidence to respond to her needs, making this journey less daunting. I now approach my role with more peace.
**Interviewer:** Barend, what would you say to others who might be in a similar situation as yours?
**Barend:** Don’t hesitate to ask for help. It’s not a sign of weakness, but strength. Organizations like Informal Care & More can provide support that might be life-changing. Remember, it’s okay to focus on your well-being too. Caring for your loved one doesn’t mean you have to lose yourself in the process.
**Interviewer:** Thank you for sharing your story with us, Barend. It’s a powerful reminder of the importance of support and connection in difficult times.
**Barend:** Thank you for having me. I hope my experience can help others out there. We are not alone in this battle, and together, we can navigate these tough roads with love and strength.