With all the talk of Valentine's Day, and romance in the air, this was an obvious subject for me to write about, but it’s a topic that’s, perhaps, a little bit daunting! It's a big subject and somewhat complex.
St Valentine was a 3rd-century Roman saint, commemorated in Christianity on 14th February. His Saints' Day is associated with a tradition of ‘courtly love’, defined in Medieval times as a construction of ‘love’ characterised by nobility and chivalry.
In modern times, Valentine’s Day has become massively commercialised, viewed as a date in the calendar when people acknowledge their feelings for one another by exchanging messages, gifts and cards.
For a person diagnosed with dementia, the relevance of Valentine’s Day will rapidly diminish, the day overlooked, and its purpose forgotten. But ‘love’ remains vital for a person living with dementia - as it does for us all, irrespective of the challenges we find ourselves facing. Love is the key to wellbeing; it's the basis for feelings of safety, comfort and warmth.
The eminent psychologist, Tom Kitwood, placed ‘love’ at the heart of his wellbeing flower, recognising the pivotal part that ‘love’ plays in ensuring that a person’s psychological needs are met. Without ‘love holding everything together, one’s experience of life is fragmented and insecure. This is true for everyone; and especially so for a person living with dementia who cannot verbalise their feelings and needs.
If you are the partner or spouse of someone living with dementia, how should you view Valentine’s Day? How do you cope with the compounded sense of loss that this day brings?
I recall, at a conference, Jayne Roberts, wife of Chris, who has young onset dementia, speaking about the moment when Chris was diagnosed: “We went into the appointment as husband and wife and came out a while later as patient and carer,” she said. But for Jayne and Chris, their feelings about each other haven’t changed. They are still very much in love and they are living their life to the full, making every second matter, spreading the word about their experiences of living with dementia and telling their very hopeful story.
My experience of meeting people living with dementia, getting to know how couples cope and adjust to changing demands and the challenges to their relationship, reveal similar inspiring stories.
Graham cares for his wife, Sandra, diagnosed with Alzheimer’s eight years ago at the age of 61. Sandra and Graham were united in the face of dementia and determined to carry on regardless. Inevitably, over time, Sandra’s condition has worsened. Nowadays she has few words and her ability to cope the everyday activities is diminishing. However, her love for Graham is palpable, and his reciprocal feelings for her are very evident. I witnessed a touching moment recently, as Sandra was sat with Graham on the sofa, watching TV. She touched his face and said, perfectly audibly, “You are lovely,” and kissed his hand.
Graham’s take on caring for Sandra’s is that it’s all-consuming. “This isn’t something you can do halfheartedly”, he said. “If anything, my love her now is deeper than ever, although, of course, our life together is very different now." Sandra doesn’t really know who Graham is anymore, she doesn’t recognise her home and cannot identify the people close to her by name or their relationship to her. But it is clear that she feels safe. She trusts Graham and the carers who support her. She feels ‘love’ and gives ‘love’, and Graham appreciates her gestures in a heartfelt way.
Another carer I know, who looked after her husband for 10 years, until he died recently, described caring for him as an “absolute privilege”. This doesn’t deny the problems along the way, and the pain, but it’s a testament to ‘love’ if a partner or spouse can look back on their journey with dementia and reflect on the experience as one of ‘privilege’.
So, maybe, on this Valentine’s Day, the construction of ‘love’ that we should hold at the forefront of our minds is ‘courtly love’; the kind of love that is characterised by respect and dignity, honour and service. We all have a love story to tell. Love is everything.
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