Amour

There is something universal about the language of love. Across the world we may have many different words for it but the meaning remains the same, and most importantly of all the endless ways of demonstrating it transcend barriers. There isn't a word that can truly convey the beauty or perfection of love.

Towards the end of 2013 I did a radio interview where the presenter repeatedly quizzed me about why I chose to care for my father instead of going to university and doing all the 'normal' things that people in their teens and twenties do. My very repetitive reply was that he was my dad and I loved him.

It was a simple sentiment, and I honestly felt no need to be more expressive. Yet clearly my thought processes, emotions and feelings were somewhat lost on the presenter, who seemed utterly baffled by what I was trying to convey, so much so that he rephrased his question on several occasions.

Is it really so difficult to understand that you would care for a loved one because they are just that, a loved one? The materialism of life, and the desire to climb the greasy pole to facilitate that materialism that is educated into our children at ever younger ages, didn't pass me by, it just never interested me. 

Why? Because some things are more important. A person is more precious than any 'thing' you could buy or have, and the feelings a person can elicit in those who know them are more powerful than any 'thing' could hope to emulate. I never weighted up the option of a university education and the potential for a high-flying career against my dad's needs. Maybe that makes me very odd, but I know I'm not the only person who would have acted in this way.

Millions of family carers do what I did, some do much more, others less, but I would suggest most do what they do because of love. For some it will be duty and they will feel burden not love. For others it may be a situation of convenience or dictated by a financial motivation. But for the vast majority it will be unconditional, selfless love.

Wordsmiths far more illustrious than I have tried to explain what love is, but as I said earlier, my personal view is that it goes beyond words. It's actionable rather than explainable. You may think the greatest manifestations of it come from major life-changing moments like meeting your partner, marriage or the birth of a child, but as many a carer could tell you, it can be far more subtle everyday moments.

Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.

Saying those three little words was a verbal expression of my feelings to a man who often never responded. But during the moments when he did respond, and jumbled words along the lines of “Love you too” came out of his mouth, it was like magic. Most days we settled for much more subtle expression - a squeeze of the hand, singing a line in a song, our eyes meeting or a reciprocated smile.

Really simple everyday gestures that ooze love are amazing, and people with advanced dementia can have a real advantage over people without dementia in those situations, since they rely so much less on words and much more on action, however subtle it might be. If you as the recipient aren't alert to those moments they may well pass you by. If anything should motivate you to be more observant then that is it - believe me, it’s worth it.

All the things you do as a carer, from the simple to the complex, from the advocacy to the laundry, the shopping to supporting eating and drinking, all of those contain subtle moments that show your love. Moreover, during those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through. Perhaps that is why the theme of love, of being loved and feeling love, feature so prominently at most funerals - in the toughest times, love can pull you though when you feel you cannot give any more or go on being.

After that radio interview, I thought about what might have prompted the presenter’s line of questioning, and the persistence he showed in trying to elicit a different response out of me. Perhaps university was the best time of his life and he felt I'd missed out. Perhaps he thought the lack of a career and the financial security that could have come from that had deprived me of opportunities to see and do things that have now passed me by.

Or maybe he had just never been a carer. Or lost a parent he loved. For anyone who has, I think my motivation for doing what I did would be very clear. Of course the great beauty of life lies in the fact that we all take our own path, for better or worse, and what was right for me wouldn't be right for everyone.

Finding love, expressing love and appreciating the many different ways in which love can manifest itself is the greatest joy life can give you. Caring for my father was a privilege and a blessing that I wished had never ended. It was borne though love, sustained though love and lives on though my work, which incidentally I also love! The joy of amour is truly a wonderful thing.

Until next time...

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