Every so often the media reports another potential “cure” for Alzheimer’s. Of course, I listen to, or read the article with interest. It is baloney. I am convinced little progress is being made into either the causes, or the cure for dementia. The cynic in me believes this disease provides a lucrative cash cow for big pharmaceutical companies. Every now and again they feel the need to justify their huge research funding. I believe this is why these articles appear – just to keep us optimistic.
While we wait, I learn more and more about dementia and the misery it can bring. I feel heartbroken by the implications of being trapped in the land of dementia and long-term memory.
I have a friend whose parents, as children, escaped from eastern Europe during the second World War. An experience that inevitably leaves a mark on the psyche. My friend’s mother developed dementia as she grew older. Her confusion and anxiety reached a point where she became convinced the scout troop who met regularly across the road from her apartment were Nazis coming to get her. Her experience was not anxiety. It was terror.
I know of another old woman who needed to carry a baby doll around with her. It was her only comfort when her long-term memory took her back to the dark places of her childhood. She would wail and beg not to be sent into the dark cupboard with her father. As a child her dolls had been her comfort. As her dementia progressed they became her comfort again.
‘Living well’
This illness, at this point, in these circumstances does not benefit from therapy or counselling. It is impossible. In the here and now, not in some future Utopia free from dementia, what can we do? The concept of “living well” forms a key part of current thinking on dementia care, but how can this idea be relevant to nightmare scenarios? In these circumstances, “living well” is almost a cruel joke.
I absolutely agree research into this dreadful disease must be funded. But I am also angry that those of us living in and dealing with the situation as it currently is are not receiving the funding and support we so desperately need. As austerity bites deeper and deeper into government budgets, money from the public purse is being cut.
It does, however, remain vital to recognise, alongside scientific research into the causes and treatment of dementia, that we need energy, vision, resources and compassion to support those living through the day-to-day reality of this illness.
Cuts to adult care services are tantamount to elder neglect.
In the same way that living with dementia is not all doom and gloom, neither can one always live well. We all have difficult and rubbish days. We all have wonderful, glad to be alive days. Then there are the days when we simply plod on as normal. With any luck we maintain a balance between these options as we navigate our way through life’s complexities.
On an individual basis, I would be less irritated and more supportive of the “living well” point of view if there seemed to be a greater acceptance of the downright boring and difficult days.
Tony has recently refused to take his medication. Apart from force feeding the tablets to him like a foie gras goose, there is nothing I can do. To be honest I have not noticed any significant change in his condition except that he is eating better. Meal times are still frustratingly slow, but he is finishing his food. I have finally persuaded him that eating with a spoon speeds matters up and, therefore, his food does not go quite so cold.
He was initially offended when I suggested a spoon rather than a knife until he became exasperated with trying to use his fork as a shovel. I cannot believe even after 20 years Tony refuses to accept I am always right!
I will admit, however, that I was wrong in proposing we take Annie to a cat rescue organisation. Having recovered from her tough start in life she is a wonderful little cat. Far from being quietly grateful I rescued her, she instead noisily asserts her will on the entire household, loudly voicing her discontent where necessary.
She likes it best when Tony is snoozing in his armchair in front of the fire. It is even better if he is wearing a fleece. She likes to lie on his chest purring loudly, dueting with his snoring.
Tony, of course, has completely forgotten the feline drama and my wicked intention to despatch Annie. Rosie, our old cat, is terribly sedate these days enjoying the comfort of a warm basket under my desk. Annie, on the other hand, can appear to be in several places at once. Tony keeps telling me we are over run with cats and asking me why we have so many, even though this is entirely his doing.
Read more of Steph's "Married to Alzheimer's" columns on irishtimes.com/health
