DEMENTIA A PERSONAL HISTORY: Communicating Through the Dementia Wall

Another great communication tool: touch

One of the huge issues that dementia patients have to live with is isolation. They are locked out of the world without a key to re-enter it. Imagine the fear and despair that would cause you.

Before he came to live with us, my father had some serious health problems and spent a nightmarish spell in and out (mainly in) hospital. We had the horrible but not uncommon problem of the hospital being several hours’ drive away. When Dad finally emerged after a period of rehabilitation, he was certainly not his old self. He was quieter, more inclined to be fatigued and much less mobile. Given his near-death health problems and recent bereavement, this was unsurprising to us. ‘Give him time’ we all agreed. We were all simply thankful to have him safe and amongst us his family after a worrying and thoroughly unsatisfactory final few months on his own being visited by Adult Social Services. In fairness, they probably did not have the time or know him well enough to address the health problems that were brewing and which finally and savagely attacked him.

They were there, those two warning precursors of cognitive impairment; the quietness and the ‘not being quite themselves’. He was still perfectly able to function mentally for those first six months at least. Dad continued to scour the newspapers as he had all his life and discuss the wider world. He was on top of his personal affairs and day-to-day living. It was just that he took a less active role. When I think back, he rarely initiated conversations or bounced ideas in the way that he used to. I filed it in the drawer labelled ‘Old Age.’ For some reason, it never occurred to me to question the contrast with my mother, who had been four years older than Dad and yet had remained ‘on point’ and entirely herself right up to her last breath.

Another major challenging which can be life-changing for those with or developing dementia was Hospital. The lack of human contact, the absence of the familiar, the day-to-day continuum is daunting enough to most of us but to those fomenting dementia it is nothing short of disastrous. On the occasions when he was kept in for one reason or another, my heart sank and I was wracked with anguish for him and for other dementia sufferers there in that environment; busy, overflowing with strangers, intensely lonely and, of course, offering no real clue as why they are there. I have noticed many dementia patients becoming extremely anxious in places and situations where there is a lot of activity, many of them feeling somehow guilty and needing to join in and help somehow.

 One of the most poignant memories of my father – a great conversationalist and witty raconteur – is of some of the mealtimes after he had joined us. Used to ‘holding forth’ and delivering a great collection of anecdotes (by no means all familiar) there was now inevitably a different dynamic, given the fact that he was not at his own table. Dementia or not, this was potentially a difficult situation. Gamely (and politely), he would try to make interesting conversation, but the rapid-fire inter-teenager talk soon threw him and I could see him begin to lose confidence. He had enjoyed this from his own children and thrown himself into it all with gusto. But the grandchildren and the knowledge that he was no longer in charge was a bridge too far. There is a point when they know they are not adding to the general wisdom or entertainment but are unable to formulate any reason for this. He began to make self-deprecatory remarks and pronounce himself ‘bad company’ and make his excuses and leave the table. Sometimes he would begin a topic or story and then trail off. I knew there were things going through his head, but he self-censored or was not able to articulate them.

Teenagers, wrapped as they are in their world and with little patience for older generations, are probably not the best company for those beginning their journey towards dementia. It is a different matter once they understand. Children, of course, are generally enjoyed by people with dementia as, so often the person is able to recall his or her own childhood or large chunks of it brilliantly. It takes management – on both sides – and this is something I did not have the experience to achieve for him at the time, while desperately wanting the children to slow up, listen and humour him a little, while at the same time being able to explain more fully to my father. As time went on, they became exasperated by his apparently coughing a lot during meals. I mentioned this to various medical professionals who issued prescriptions, but no one mentioned dysphagia or its association with dementia. If only! Eventually the well-loved voice falls silent and, to me, this is one of the cruellest blows the disease deals out.

So, what can you do?  The answer is you build them up again. You offer them comfort. You actively defuse the feelings of being overwhelmed which affect so many living with the condition. As time went on, I began to see this with Dad, especially on his ‘bad days’ (and they do so vary according to the individual’s biorhythms and also according to the season or time of day).

You prompt them. Rather like a comic double-act, you, as the ‘straight guy’, set them up. You ‘forget’ some incident or person from that section of the past which you’re confident they’ll recall but, remember, avoid asking questions or dealing in abstract concepts – keep it ‘concrete’. See if they remember them. Make it current if you can, as though it were happening now and invite a conclusion or solution that you think the patient will be able to supply. Think pets, houses, gardens, cars. Think of their physical characteristics and descriptions.

One of the advantages to nursing someone very close to you is that you know their triggers: their real enthusiasms, aversions, or the stories behind certain things. I found myself playacting. If you haven’t read the fantastic and ground-breaking book Contented Dementia by Oliver James, then this is the moment you need to, as I wish I had. But then, I wish I had realised what was happening to Dad. Luckily, I could do this (to a degree) instinctively. I remember opening the window and listening theatrically. Dad took the bait.

“What can you hear out there, love?” he asked.

“The cuckoo,” I replied, knowing well that it was his favourite bird and associated with a number of stories surrounding the first home he remembered. It worked and he was off, telling them all anew.

Or another effective tactic is inviting them to demonstrate a practical skill or solve a simple problem that you can be confident is within their power of solution.

“Any idea of how I can make this into a parcel?” I asked Dad one day, knowing that he would be able to remember working in the Despatch department of both Hamleys and the Army & Navy stores. He was delighted and did a fantastic job.

Emotion (especially empathy) can be difficult for people with dementia. It falls into the Abstract and is probably something you want to steer them away from although positivity on your part is great (essential) for both parties. Good, simple news can work well. I found concentrating on Nice Things that you’re bought, made, are doing with them was good and that enthusiasm is calming even if not directly shared. I will talk about travelling and sharing old entertainments in another blog.

Step back from your busy life and go into the micro. When they are feeling overwhelmed, it is all too easy to become so yourself and then the instinct to run away can seem like your only option. It’s then that you need to smile. Absurd though that sounds, it can be answer for both of you. When Dad was in meltdown asking where he was and what was going on (his shorthand for HELP!) and that he couldn’t think how he’d got to where he was, I would try and ground him. Steady his breathing. Include him.

 “When you think about it, Dad, none of us do. Not really. We all just have to take a deep breath and make the best of it. But look, It’s a beautiful day and the sun’s out. So let’s just enjoy it.”

And he did. He made a point of enjoying his life, even in its imperfect final chapter, as much as he could. I do hope it works for you and your loved one.

Next time: The Activity Trail