Anne-Marie and Patrick were married in 2000. Patrick’s Parkinson’s diagnosis came 19 years ago on his 40th birthday when their children were just four and two-and-a-half years old.
Since co-founding the Demoucelle Parkinson Charity in 2011 to help accelerate research to find a cure for Parkinson’s disease, the couple often talk openly about the disease, its symptoms, the importance of supporting scientific research and how they approach life with a positive attitude. Anne-Marie has however rarely spoken about her role as a caregiver.
This Parkinson’s awareness month, Anne-Marie has decided to share some of her experiences in the hope that it might help others.
Why did you agree to do an interview about being a caregiver?
In the Q&A session following a talk that Patrick and I gave recently, I was asked about my experience as a caregiver and heard afterwards that what I had said had resonated with quite a few people. That’s when I realised that sharing my own experiences might help others, whether they care for someone with Parkinson’s or any other condition. I’m not saying that I have all the answers, but I have learned some things along the way that might be useful to other people in a similar situation.
And there’s another reason why I want to share my experience as a caregiver. Over the years, I’ve heard some people say ‘Anne-Marie is so strong. What’s wrong with me? How come I’m not as strong as she is?’ I don’t think that is true. It is difficult for each of us that are in this position but perhaps by sharing we can help each other.
Let’s start at the beginning. How did you react to Patrick’s diagnosis?
Almost a year went by between the first time Patrick went to see a doctor almost 20 years ago now and the moment he got the final diagnosis. Initially they didn’t know what Patrick had, and then the Mutuelle health insurance always had to approve additional tests (DaTSCAN, PET scan etc.). It doesn’t always take so long before people are diagnosed with Parkinson’s. It can be much quicker, depending on the progression rate, the presence of typical symptoms and the thoroughness of the diagnostic process. Personally, I did not mind the wait because, in truth, it helped me to get used to the idea that something might be wrong. A year is too long, but in retrospect I preferred the delay to being confronted with an immediate diagnosis.
How did you react when you finally got the diagnosis?
There was a long period of denial: ‘It cannot be true’, ‘They are wrong’, and so on. I waited a further two years before even telling my sisters that Patrick had Parkinson’s. And it took five years before I told my colleagues at Allianz. In part, because I didn’t want to accept the diagnosis. But also, and I feel quite embarrassed about this now, because I was worried that people would see us differently, as less strong. I hated the idea that people would feel sorry for me.
During those years, I also very much downplayed the gravity of the disease vis-à-vis Patrick. I thought my role was to make him feel more positive. So, when Patrick was showing symptoms, I would say ‘Oh, but it’s not that bad. Honestly, you barely see it. It’s okay’. I wanted to ‘lead by example’ and be positive. But I realised later that this had exactly the opposite effect. Patrick didn’t feel understood. He didn’t feel ‘seen’. He felt that I was completely oblivious to what was going on. And in fact, I was making things worse for him. So that is one lesson I want to share with other caregivers: being positive won’t help if the patient doesn’t feel understood.
What has been most difficult about the disease?
What’s most difficult is seeing Patrick struggle with everyday things, like getting into bed, going to the toilet, eating, speaking. That’s tough. It’s also difficult to see the disease evolve and wonder what’s next. It’s difficult to see people staring in the street. It’s difficult to accept that we’re not in control. It’s difficult to lose most of our social life. I can still do things on my own, and I do, but even though Patrick finds it important that I go out, I know it’s so tough for him because he cannot anymore. Which leads to another major challenge I struggle with: finding the balance between being there for Patrick, being a couple and taking care of myself.
What did you learn?
As already mentioned, I had to learn to acknowledge the disease. But that was not easy. I first thought that my role was to tell Patrick how to think, feel and what he needed. But that didn’t work at all. He didn’t feel understood. I had to learn to listen. To listen, without thinking that I knew it all.
I also needed to develop more empathy. For example, sometimes Patrick could be quite difficult, telling me that everything I did was wrong. I took this very personally until I heard the phrase: ‘hurt people hurt people’ i.e. that people who experience pain are likely to pass it on. That’s when I realised that of course he experiences difficult emotions and of course he has to be able to express them! It isn’t about me or directed at me. I’m just the sounding board.
Learning about the disease proved helpful as well. At some point, for example, Patrick was quite apathetic. I didn’t recognise him anymore, and I found this very difficult. Until I learned that apathy is one of the symptoms of Parkinson’s. Once I knew it was a symptom, I stopped fighting it. There was nothing to fight. It is part of the disease. And all I could do was accept it. Luckily, the apathy disappeared again later on.
I also learnt that Patrick is not weak, but incredibly strong. And that he can take it when I talk about what I need, and about what I don’t like. Just like I can take it when he talks about what he needs and what he doesn’t like. So that was yet another lesson. Patients are not weak!
The beautiful thing is that all these lessons have made me a more ‘complete’ person. In addition, I think they have not only been helpful for myself – but also for Patrick. Because they turned us into ‘true partners’ in the disease.
How do you take care of yourself?
One of the things I do every morning is journaling. There are days where I write about all the positive things in my life, and there are days when I feel the need to dwell on everything that’s going wrong. This process of writing down my feelings has been extremely important to me. I must acknowledge what’s happening to Patrick, but I also have to acknowledge what’s happening to me – and that’s what I do by journaling.
A second element I pay attention to is doing things that energise me. Like seeing friends. Or doing fun things. Last year, for example, I sang in a musical. And more recently I’ve joined a group of Toastmasters, just because it gives me a lot of positive energy.
I don’t want to be a victim of our circumstances. I want to be an agent of change. So, when I feel like a victim, which happens often enough, I ask myself: ‘What do I want? And if that’s what I want, what’s the best thing I can do right now to make it happen?’ It’s important to allow oneself to be sad and down sometimes, but I find it important not to remain stuck in the negativity, and instead work towards the future that I want.
Creating the Demoucelle Parkinson Charity came out of that concept: let’s not sit back and hope a cure will be found. Let’s do something about it! Becoming an agent of change rather than a victim has been a very effective ‘therapy’ for me.
In summary: personal development techniques such as journaling; doing things that energize me, and; taking an active role rather than that of a victim, are three coping mechanisms that have helped me very much – and that perhaps might help other caregivers too.
How do you think about the future?
I no longer think further ahead than one year. Contrary to when I was in my twenties, I don’t seem to be able to project myself much further ahead. In fact, as soon as Patrick was diagnosed, I preferred not to think any more about possible futures.
This being said, I do have a very strong vision of getting to a cure for Parkinson’s. And I do have a strong purpose, which is to help others thrive while also having a good life myself. Those are my goals. Each day, I reflect on what I can do to get closer to that vision and that purpose. One step at a time. We’ll see where it brings us …
Looking back, how would you describe the past 19 years?
A degenerative, and currently incurable disease, in the family is not what I had dreamt of. Then again, who has the life they dreamt of? I’m grateful for the wonderful relationship that I have with Patrick and with our kids. My life has more purpose, and I have become a more ‘complete’ person. Having Parkinson’s disease affect your family is tough, but I still have so many beautiful moments. I would certainly call it ‘a good life’.