When the call came from the doctor and the words "Your husband is out of therapy" rang through the receiver, I knew that a new chapter in our long history together was about to begin. Thomas, my partner and husband, would soon be coming home again. Not with the ease he once had, but with the weight of the unstoppable progression of his MS disease. At that moment, our home in Altona, filled with Christmas lights and countless memories, felt a little smaller. I knew it was time to make room for a care bed. So I started taking down our eight Christmas trees.
Christmas in January: Our own little world
Why Christmas in January? Well, it's our way of getting away from the outside world for a bit and focussing on our own little sparkly world. Our home lights up all year round, and especially in January we wanted to fill the darkness with lights and joy. We remember better times with model steam engines and festively decorated Christmas trees. The white plastic tree from Thomas' former law practice has been given a place of honour in our home. "We bring everything in that we used to live out outside," I often say to our visitors as I offer them tea and gingerbread.
Our daily routine: in good times and bad
Caring for a loved one is not just a series of tasks; it is a series of intimate moments that expose the essence of our relationship. Thomas increasingly has his moments that rouse him from sleep. Sometimes he has supposedly bought a car, other times he sees himself in an exotic holiday destination. At moments like these, I hold his hand and say: "We'll do it, but later." It's like a game where we both know the rules but the outcomes are uncertain.
Intimacy in care: our special moments
We take a lot of time when it comes to personal hygiene. You might think that these moments are a burden, but for us it's exactly the opposite. We have our routine: I wash him carefully, feel the warmth of his skin under my hands and remember the many years that lie behind us. It's a quiet, respectful and very intimate time that we both cherish. It's our way of saying 'I love you' without using words. These moments of care can sometimes last up to three hours, but for us it is time we are happy to invest. It's the moments that count, the moments of intimacy that we might not otherwise have.
The farewell that is not a farewell
We know that Thomas' disease progresses, that there are risks and uncertainties. From muscle cramps to more serious complications such as a heart attack or stroke - the awareness of this is always present. But in the midst of these uncertainties, we find our refuge: our love and our home. No matter what the future holds, one thing is certain: I will be with him, and he with me, in mind and heart, until my last breath.
And so we live our lives, side by side, with the peace and comfort that only true love can bring.
Because when love is real, it is the light that shines even in the darkest night.
