‘He just won’t listen!’
‘I’ve told her that until I’m blue in the face!’
‘He’s asked me that five times already today.’
‘You don’t remember much these days, do you Mum?’
Seeing your ageing parent slip gradually into the confusing and bewildering world of dementia can be a deeply upsetting, worrying and – often most of all – frustrating experience. It’s as though someone has changed the rules and forgotten to tell you. Patterns of shared behaviour that have been in place for decades no longer seem to work. The parent-child dependence that you have relied on long into your adult life is gradually being reversed, and just as you adapt and make changes in how you support your Mum or Dad, so their needs change, their health takes a turn for the worse and you have to think again.
Increasingly I can see parallels with what it is like when you first become a parent. I well remember the journey home from hospital with our 2-day old daughter, thinking how surreal it was that we were to be trusted with this utterly vulnerable baby when we knew so little about what we were doing. I half expected the parenting police to turn up at any moment to check us out and demand to see our parenting qualifications before we went any further. And whenever you felt like you were getting somewhere, like you knew how to do this child-rearing thing, your child would have moved on – thoughtlessly developing before you were ready, always one step ahead of you as you ran to keep up.
To be a ‘Good-Enough’ parent (and we should never be so foolish as to think that we can be more than that) you have to learn on the job, but you do well to take as much advice, help and support as you can along the way. Learning from other parent role models, reading what you can about parenting (but not so much as to lose the joy of it!) and parenting classes are all invaluable as you experiment with what works, and what does not work, with your own child.
Adult children, and spouses, of people with dementia often feel just as de-skilled and ill-equipped to deal with the challenges it raises as any new parent – and have to face these challenges without any congratulations, bottles of champagne, cards, flowers or baby showers. Who ever heard of a ‘dementia shower’? And yet it might be both more useful and more necessary.
Do we need a ‘Parenting’ class for the children of adults with dementia? A forum where people can get support and learn to cope with how to adapt to the rule changes? They may already exist, and there are so many people out there doing good things that I suspect they do, but I am not aware of any. I am no expert on how best to look after someone with dementia – I have had no personal experience so far of having to care for someone in my own family and I am a GP, not an expert in the psychology of older people. I am aware of some things that don’t work, however, as I see them all the time.
I see family members getting frustrated that their loved one doesn’t follow a logical argument anymore. They go round in circular arguments, trying to explain why someone should take their tablets/accept care/wear different clothes, or all manner of other important, reasonable things that their Dad stubbornly refuses to listen to. Sometimes they succeed, and reach agreement, only for the decision to be completely forgotten 5 minutes later and the argument starts again, with added frustration. Sometimes people bring their relative to me, as if the authority of the doctor can persuade them – and sometimes I do, but my words prove to be no more memorable and the end result is the same.
Other times I see great sorrow in the eyes of a patient who is constantly being reminded that they forget things. They feel they are letting everyone down, and just being a nuisance, crushed as they are by the prevailing world view that the here and now is all that matters, and remembering what you had for lunch is of greater value than years of memories of a life well lived.
On rare occasions the frustration on both sides can lead to anger, and anger to aggression. Usually this is mostly verbal, but it can become physical, demonstrating how high the stakes can become in this very great challenge to our society.
I am convinced that when your relative develops dementia you need to learn how to think differently, and need as much support and advice as possible in meeting this very difficult challenge. I have some idea of what can work – things like using distraction as a way out of circular arguments; the importance of familiarity; the value of learning to think like your Mum or Dad would think, and putting into place what they would want rather than what you would want if you were them; and the positive impact of celebrating and enjoying those memories an older person still has, rather than focusing on the memories that can no longer be laid down.
I would be interested to hear of anything like a ‘Dementia Parenting Class’, but in the meantime I would like to highly recommend an inspiring, compassionate and thoughtful blog on dementia called D4Dementia, by Beth Britton. Beth has learnt her dementia lessons the hard way by caring for her father who suffered with the condition for 19 years before he died. There are good leaflets on how to care for someone with dementia (for instance on the Alzheimer’s Society website), but there is nothing quite like hearing someone’s personal story and learning from their unique successes and failures. There are inspiring posts like ‘Little Touches That Make a BIG Difference‘ that can help remind us that every patient with dementia was, is and will be a unique personality no matter how unwell they become. Other posts offer great common sense reflections such us ‘NCD, otherwise known as Dementia‘ where she reacts to the baffling declaration from the American Psychiatric Association that dementia will now be known as ‘Minor and Major Neuro-Cognitive Disorder.’
If you have any reason to need to know more about dementia (and perhaps we all do), then do check out her blog – I guarantee you will be glad that you did.