Caring For A Parent: from deep love to frustration, gratitude to resentment, devotion to anger and back again.

First off, I want to send all my love, support and compassion to everyone out there who finds themselves in the position of caring for a parent – or both; my father passed away early on in life. My heart goes out to you. I've been through a lot in my short life, but this situation is by far the most challenging I have experienced. 2025 marks the tenth anniversary since my mum started showing signs of real decline healthwise, and the beginning of a journey I was not prepared for.

I have written about this somewhere in this blog before; I turned to writing down what my mum and I were going through for a few weeks after a particularly distressing incident, but I stopped after a while. I am writing about it now because, after ten years of trying to figure out what would be best for my mum and me, I am now faced with the reality that what might be best is something I never thought I would consider: a nursing home. The mere fact of writing this down makes me uncomfortable still; my heart still does not feel aligned with this idea. Maybe it was – is – naive of me to hold on to the idea that it can be avoided, that there is another ending to this story. Call me crazy, but if I'm going to dream, I might as well dream big.

An unforgiving disease

Despite leaving home as a teenager, my mum and I have a close relationship. She visited wherever I ended up living throughout the years, before she retired and went off on her own travelling adventures. She was blessed with five years of gallivanting and exploring the UK, Ireland, as well as northern and southern America, before being stopped in her tracks by an aggressive form of rheumatoid arthritis. It first manifested in her toes in 2011, and she was diagnosed with RA a few months after that. By the end of 2014, her mobility had noticeably deteriorated. After coming to visit her in January 2015 for what I thought would be a few weeks, I decided to stay by her side as her condition did not show signs of improvement. Fast-forward to January 2025: I am still by her side, while I simultaneously attempt to build a life of my own. Despite the circumstances, my nomadic spirit combined with the job opportunities that presented themselves along the way allowed me to have a 'break' here and there, and to embrace the situation with a certain optimism that it would not be forever. And for the first five years, it seemed like we could sustain this.

Looking after my mum became a mission of some sort; we explored many avenues to find something that would provide relief. I watched my mum gradually lose strength and become more and more dependent on me. I was determined to do everything I possibly could to help and support her through the continuous physical pain and despair in the face of an unforgiving disease. And I am still determined to support her, but ten years is a long time, and the years have taken their toll on both of our spirits. The last five years proved even more of a challenge: upon our return to France, my mum stopped walking altogether. She had been using a Zimmer frame for a while, but the progression to a wheelchair was a blow to both of us. Nonetheless, I remained hopeful that we could find a solution.

Becoming a carer

My mum hasn't walked since October 2020; she remains in a wheelchair. As of a week ago, I officially became her full-time carer. I never thought of myself as her carer until a few years ago. As far as I am concerned, I've always done what I thought was right in my heart, regardless of the label attached to it. I tried to find a way for me to step back and concentrate on my life, but the organisation that it requires is akin to an obstacle course. Even when I am away, she is constantly on my mind. I feel like I have been in limbo for the last five years, stuck between a desire to be there for my mum and a desire to create a life outside the walls that this disease has built around us. When I came back to France last summer after spending the beginning of the year in another country, I knew something needed to shift in a different direction. Even though what I had set up until then provided my mum with all the basic needs of day-to-day care, her level of dependence calls for round-the-clock support. It is a fact I can no longer deny; perhaps deny is not the right term, I think I was just focusing on –and hoping for– getting her better. I am now ready to consider options I was just not willing to take into account a few years ago. You're not ready until you're ready.

What has also led me to consider a nursing home is the need for social interactions and activities; I believe that her life would also be enriched by the community that such facilities provide. Despite knowing that it is the most sensible option right now, it is extremely difficult to come to terms with it.

Embracing change and adapting

So here I am: stepping fully into the role of carer for the time being while I research and visit potential nursing homes. I resisted both for such a long time that there is a certain relief attached to this change of trajectory – and maybe it was always inevitable, maybe it was what I was always meant to do all along. As challenging as this experience has been on my well-being, I have always felt grateful that I can give the time, love, and care to my mum. Despite the conflicting emotions that come with caring for a parent, I am not doing anything I do not want to do. I choose to be present for her because it feels right. Caring for my mum, looking after her, cooking for her, giving her yoga classes, and pampering her are all things I find extremely rewarding. Yes, it is very tiring and demanding: I have days when I feel extremely alone and overwhelmed by deep sorrow. However, the biggest challenge of this experience is that I had to come back to a country I had no desire to come back to. I left France many moons ago with no intention of coming back, so it is not pleasant to be somewhere I do not wish to be. That is where most of my resentment comes from, to be honest: I feel trapped in a country that does not resonate with me. I am hoping that by leaning fully into this phase of our journey, the silver lining will show itself. And in many ways, it already has. My mum finally found a treatment for the RA that has reduced the symptoms, although the damage to her body is severe. I also found a physiotherapist who is not intimidated by her disease and the limitations and pain that my mum lives with. Some things have changed for the better, even though I feel powerless most of the time. I'm writing this to make sense of a situation I often cannot find the words to explain to anyone. I also know that there isn't any sense to be made, nor explanation: those are just the cards we have been dealt in this life.

#rheumatoïdarthritis #livingwithRA #caringforaparent