THE NUMBER OF people in this country with dementia is expected to more than treble over the next 30 years. Yet a tenth of the funding that goes into cancer research goes into dementia research, as if the death of the mind is somehow deemed less significant than that of the body. A sudden, decisive end somehow deemed more worthy of tackling than a gradual, insidious decline where the individual is slowly hollowed from the inside out.
Dementia is more than just ‘getting a bit doddery’. It is more than just forgetting where the keys were left or the name of a grandchild. It is leaving the grill on and not understanding what the smoke alarm means. Or drinking half a bottle of whiskey because you didn’t recall when you had the first glass. And then getting behind the wheel.
It is relying upon the kindness of strangers and walking blindly into the arms of anyone who chooses to take advantage. It is hoping that the world around you will choose to protect, not just ignore. It is the body of an adult with the innocence of a child. It is vulnerability personified.
It is clinging to the remnants of a personality which haven’t yet been obliterated by an insidious and silent disease which creeps up and takes hold without fanfare or scans, without treatment options or operating theatres. Without any real warning that something is terribly wrong. Until it is.
It is listening to professionals volunteer that this is ‘the worse stage’. As if it will somehow be easier to handle when the person no longer knows their own name. It is being told solemnly that they have a strong heart. With ‘unfortunately’ being the unspoken addition. Because the rate of decline of their mind is in no way matched by that of their body, and it will depart them long before their physical presence follows suit. It is grieving that loss as they stand right in front of you. And hiding it.
It is being instructed that it is a ‘long road’ ahead and to pace yourself. And yet never once being asked how it feels to be their companion on this inevitable road to nowhere.
It is managing a condition where even after it is afforded a name, it is unclear which medic needs to address it. As oblivious patient is vollied between geriatricians (implying dementia is a natural part of aging) and psychiatrists (implying that it is not).
It is the ups and the downs, the good days and bad. The degenerative milestones you would rather not notice, and the ordinary chat as if nothing were a miss. It is trying to be the best daughter you can be, and parenting in reverse, when there isn’t even a verb to describe the uncomfortable dynamic that entails. An inevitable role reversal which neither generation welcomes.
It is the knowing looks you get from sympathetic strangers who have walked a mile in your shoes and who understand the unnatural dynamic it entails. Who too have fallen down the rabbit hole and woken up in a topsy, turvy world where parent is child and vice versa.
It is being forced to question what constitutes quality of life. Whether exposure to every day risks is intrinsic to life itself, and whether shielding from all those risks equates to no life at all. Just like the odd bruise and scuffed knee on our children signifies their living their little lives to the full, can an adult who is entirely protected from the outside world really be said to live at all?
It is trying to fast forward the clock 40 years, and putting yourself in their shoes. Or rewinding it ten to put yourself back in theirs and decipher their wishes. It is crystal ball stuff and it is difficult beyond words. There are no rights and no wrongs. Just 50 distressing shades of grey. Which most people generally don’t like to discuss, because they don’t understand it. Cancer, they get. Alzheimer’s, they can’t even spell.
Most medical professionals in this country have not had sufficient training in handling people with dementia even though it is estimated that a quarter of all patients in a general hospital setting at any one time will suffer from it. And if the medics can’t get around to learning about it, you can only imagine how it is handled by the professionals within our banks, our utilities, our legal system, our large corporate entities. All of which deal, directly or indirectly, with dementia sufferers all the time, but for whom ‘corporate social responsibility’ does not extend to training their staff on how to humanely deal with the most vulnerable and deserving members of our society.
However you choose to define it, be that in statistics or in human experience, this is the future that awaits us. This is the legacy that we are blindly passing on to our own children.
Pension crisis? Global warming? That will pale into insignificance if one in five of us can’t tell the difference between a fiver and a tenner, and whether it’s 2 degrees outside or 20. And yet the long awaited National Dementia Strategy promised within the 2011 Programme for Government is still awaited.
Ireland is predicted to have the largest growth in older population in Europe in the coming decades. Risk factors for dementia include booze (“Anyone for another?”), high cholesterol and obesity (“Giv’s a side of chips with that Mary love, would ya?’’), mental illness (“Ah, sure you’ll be grand”), and of course old age (see above). Yet Ireland spends roughly half the OECD average on investment in long-term care. Worried yet? We should be.
Me? I just pray I never have to hear those immortal words. That I am not one of the 147,000 sufferers predicted in this country by 2041. For the sake of all concerned, give me a heart attack any day over being betrayed by my own mind.
The author has direct experience of caring for a loved one with dementia. Out of respect for them, she would rather remain anonymous. The Alzheimer’s Tea Day takes place on 1st May. Please support those working to improve the lives of those suffering from this ever increasing disease.
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