Forgive the title please – especially all those out there who are intent on subjecting the topic of dementia to stringent semantic rules as if the disease wasn’t enough to contend with. I know people with dementia should not be referred to as ‘Crazy’ – it’s just my tiny little joke combined with my love of Beyonce – OK? But it interests me – the whole notion of how a relationship works when one half of the couple undergoes a significant change in mental state and personality. This is true in schizophrenia and other psychotic conditions as well as dementia. It can also happen following significant brain injury, particularly frontal lobe damage. The man or woman you once loved is simply not the same person any more (I won’t say ‘literally not the same person‘ because there is literally nothing more annoying than people using ‘literally’ incorrectly. My husband once came home from work apoplectic with rage having been told by a junior psychiatrist that a shared patient was ‘literally out of her mind’ when clearly that is impossible).
I digress. My question (posed solely to myself) is If the person you love has altered on a fundamental level how can you still love them?
I can understand with a parent -child relationship how love endures even in the most devastating circumstances. Maternal and paternal bonds are deeply embedded and over-ride much in the way of logic and practicality. I have seen parents who clearly still love their children deeply even though psychosis or injury has totally changed their child’s very nature but surely this is because we don’t choose our children based on their personality (we clearly don’t ‘choose’ them at all). We do however, choose our partners. True, some do not use personality as a key component of that choice – a bit of eye candy with the emotional range of a teaspoon may be a perfectly reasonable life-partner for some but I like to think that the majority of people who end up in a long term relationship do so because they share at least a few interests – there are aspects of that individual’s behaviour, values and beliefs that chime with their own. And if that behaviour changes, if those values and beliefs change, if the person who hated country music or rollerskating or beetroot suddenly becomes a passionate advocate for these things then what do you do? Become a rollerskating, beetroot-loving, country music fan yourself?
My mum used to hate all that war-time music and schmaltz – the Vera Lynn / White Cliffs of Dover / Dad’s Army fodder that people of a certain age enjoy. To be honest she really loathed being around old people – I’m not sure if she was worried some of their elderliness would wear off on her – she was fixated on not looking old or getting old. She had seen her own mother develop osteoporosis and become increasingly debilitated and dependent which may explain some of the aversion but I suspect that she was also a little squeamish about the physical problems associated with ageing; the incontinence, the noisy eating, the false teeth, the hairy chin. So when dad took her to a music session (a ‘Singing for the Brain’ type group – prompted by me and my sister), introduced her to a circle of octogenarians and heard the opening strains of “We’ll meet again” he was dubious about the likely benefits. But Lo and indeed Behold! There she was, clapping along, singing in the way that adults usually only do when they are sure nobody else can see them; full blast, out of tune but really feeling the joy of the music in a way that we’ve never seen previously. She was the same at the recent pantomime we went to, roaring with laughter at the slapstick, joining in with the “he’s behind you” while my dad, who is now more habituated to the personality changes, gave a small smile and nod in reply to my quizzical expression, as if to say ‘I know it’s not her anymore but at least this person sat next to me seems to be enjoying herself’.
I think ultimately this is how dad has reconciled himself to the situation. His life-partner, his great love has died. He is, in effect a widower living with a a woman who needs his care and companionship and who still, in her own way, loves him. She follows him round the house, she seeks him out when she is confused by something or needs a translator and she misses him when he leaves (although she can be very easily distracted). He is now much calmer and more accepting of his new role. For his part he ensures that her physical needs are met, she is fed and watered, kept safe and entertained. Does he still love her? Who knows.
Finding out that the person you share your life with has dementia is the same as finding out that they have any terminal illness and yet, partners and family members of those with dementia are not able or allowed to grieve in the same way as if perhaps they had been diagnosed with cancer or heart failure (see the study linked to “An angry rant”…). If your partner has a terminal illness that does not affect their cognitive function then your physical attraction to them may be compromised by their increasing debility but your connection with them as a companion continues. Whatever it is that links us to our soulmate, whether it be spiritual, emotional or intellectual endures until the time of death (and potentially beyond, in our memories). I genuinely wonder now whether there is anything bonding my parents together other than her practical needs and his sense of moral duty. And yet, I hope desperately that there is something more so I examine the evidence searching for clues.
He can’t find her physically attractive (and lets face it, this is not a topic I want to dwell on anyway because who wants to contemplate that aspect of their parents lives – dementia or no dementia?) but I hope he remembers how good she used to look and how much effort she made to keep herself in shape. He can’t rely on her for emotional support or converse with her as an equal but he is proud of her small achievements (in a way that I cannot bring myself to be because I still focus on the deficit, to my discredit). He is protective of her feelings even if there is little evidence that she needs this protection – he is alert to potential distress and seeks out physical contact for her by encouraging the children to give granny a cuddle when they say goodbye or snuggle up to her on the sofa when they’re watching TV.
So perhaps the depth of feeling is still there even though the nature of the relationship has changed. Compassion has replaced passion. Silent companionship has replaced conversation. Shared goals and equality have been replaced by a need to nurture and be nurtured. Caring for someone does fulfil an emotional need in all of us and it may be that this aspect of the new role compensates very slightly for the loss. I do find that so many of these blog posts end with me scrabbling around for minor consolation – sometimes I suspect I am fabricating a scenario or an explanation purely to make myself feel better. At the end of the day, we are where we are. There is no alternative, there is no point in questioning how dad feels about mum because he would look after her irrespective of his feelings. Would I want my husband to have to do this for me? No. Would he do it? Yes. That’s what we sign up to isn’t it? Sickness and Health. We just hope that the horror of the sickness does not completely erode the joyful memories of healthier times.