The Rabbit Hole That Is Dementia
We hear them all the time, jokes about being forgetful, or having a brain like the Bermuda Triangle, where information goes in, and then gets lost, never to be found again.
In some cases the joking may be a light relief, or a nervous response to realizing that you are more forgetful than you once were…the canary in the coal mine, a warning to be heeded.
Why write about this?
Because really, it’s no joke. Memory loss, however gradual, is something we should all take seriously,and take steps to ameliorate, if we want to enjoy a healthy mental state throughout our lives.
Watching someone fade away before your eyes, as with a relative of mine, a renowned math professor who traveled the world delivering his papers to thirsty academics, brings sadness beyond belief.
If you were to meet him, you would have no idea initially of his mental state. He’s still incredibly handsome, with a shock of white, wavy hair, and always well-groomed. It would be so easy to overlook his needs.
A blank paper
These days he is hardly able to connect two thoughts. A once placid, gentle man, he now suffers episodic anger as he struggles to deal with loss, to find simple words that refuse to come, to engage with people, and so, uncharacteristically he loses patience, behaves badly, and sinks back into the abyss.
He’s lost, he tells us, lost when with people, lost when alone, lost in a deep, black hole.
Once an avid walker, he is no longer able to explore the forests around. In its stead he stares more often than not, into a void that is now his home.
If you take time to walk down Memory Lane with him, (one way to include him in a conversation), his face lights up, and for a short time he’s on fire as he takes us on a simplistic journey back in time, to Scotland, to when he was a little boy.
How well he remembers the street he grew up in, and the tiny terraced house he lived in seems firmly etched in his mind. The antics he and his friends got up to when playing by the burn (Scottish word for river), bring a smile to his handsome face, and once again he is that child.
For a few brief moments in time, he is in charge.
But his words soon trail off and sentences hang in the air, waiting for the ending to appear, for the full-stop to be articulated, and though we smile in encouragement, the curtains are closing on his effort to be for a time, ‘on stage’.
Most days, he wanders around with his latest purchase about Category Theory (his planned PHD), tucked under his armpits, that, and a note-book in which to log his findings.
But the notebook’s pages are silently empty, save for his name, and his title, Professor of Mathematics.
His is a lost world.
Losing track of time
Some time ago my husband and I looked after him for a week. We were always vigilant, but allowed him to go each day to the coffee shop, some five minutes away. We gave him time to have his coffee, and after half an hour or so, one of us would pop into the coffee shop and see him home.
But one day he wasn’t there. We were slightly alarmed initially, but sure that he would find his way home.
After a time we called on neighbors, we talked to anyone close by, even the people in the local coffee shop, but nobody had seen him.
Some three hours later and we truly were worried. It was time to notify the police, which we did. But no sooner had we done that, than I happened upon the one neighbor who was out when I had been door-knocking.
He said he’d seen him at the local shopping mall having coffee and cake. They’d had a chat, but it hadn’t occurred to the neighbor that our relative was there alone.
One more call to the police station and within a few moments, he had been found. The staff at the coffee shop were hugely apologetic. They realized he’d been there for a long time, but they hadn’t been too worried. By closing time that would all have changed, of course.
He was subsequently dropped off by the police. We couldn’t help but smile, tearful smiles, when we heard him say, “Thank you for the ride, gentlemen,” ever the gentle professor, as he alighted from their car with his ‘shopping’, (a story for another time, perhaps)!
And therein lies the problem. How do we know that someone is lost? Are there signs that should alert us?
Just as an experiment into perceptions about dementia, an English undercover actor took to the streets posing as somebody who was lost. He approached so many people asking them to help him as he wasn’t sure where he was. His body language displayed all the hallmarks of the disease. He was good!
The actor stopped a variety of people, young, and old, singles and couples, and explained his predicament. Some simply ignored him and walked on by, but many did stop and try to help him. It was a moving piece of drama, made especially so by some of the younger people who offered to talk to the police in order to find out where he lived, to sit with him, and buy him a coffee, or a cup of tea.
There’s a stigma with regards to dementia. People are just afraid to become involved, perhaps even more aware of being inadequate, and so, often help is not proffered.
It’s a cruel disease. It’s rife. We all know someone who suffers from it, yet despite the incredible amount of research into the disease, there is, as yet, no definitive cure.
Drugs are the treatment protocol, pills that might afford a few more years of life, but only a few, very empty years.
My relative consumes a handful of these colorfully-inviting drugs, morning and night, all conflicting with each other, in my non-medical opinion, and I wonder about the protocol.
There is much fear on all sides.
Because there is much to fear.
Each day is one small step into the unknown, into the unwelcoming darkness. Doors are gradually closed. There is no escape.
Friends rarely call, not because they don’t care, but because they don’t know how to.
My relative is one of the luckier ones, as his partner ensures he is taken out each day, to socialize as far as possible. She has also set up his study with constant reminders of his family life, photos old and new, and with his laptop set up if he wishes to ‘work’.
The course of dementia varies from one patient to another. The journeys all have different potholes, and carers learn as they go along. The paring back on freedom is often gauged by family. In my relative’s case, it wasn’t so much his getting lost, initially, but rather to do with his losing any sense of time.
But disorientation does arrive eventually, and people are unable to find their way home, and that’s when parameters have to be set.
Yes there are things we can all do to help.
If you come across someone in the street who appears to be confused, there are things you can do to deal with the problem.
How to approach the person
- Approach them with a friendly smile, and ask if they need help. Stay with them. Offer your name, and ask for theirs.
- If you can, sit with them and explain that you are going to try to get help.
- Make sure you’re not so close that you may frighten them. Instead, try to be relaxed. Be patient.
- Use simple sentences and repeat them slowly, if you must. Use body language to convey meaning.
- Explain that you are going to phone someone who might be able to help. That might well be the police. It’s better to report the person missing and provide a description of them.
As with my relative, the police were already looking for him. For my husband and me, it would have been better had we realized there was yet another coffee shop that he enjoyed frequenting. It may have helped, but not necessarily.
It would seem that using a tracking device would be an easy solution to the problem. One could understand that the patient would enjoy a degree of freedom, as would the carer. Trackers can, for a time, allow life to go on relatively smoothly.
When this was suggested to my relative there was an aggressive reaction. Tracking him was seen as being undignified, not to mention the loss of trust that he felt. For a time he did use one, but it was rather problematic, to be honest.
Bear in mind that in some situations the reliance on technology could lead to a loss of care. The idea that a device affords care, is a stretch, to say the least. An d to be totally fair, agreement should be reached by both parties, for the use of one.
At the end of the day, it’s just not easy. There’s so much to think about. Respect needs to be at the forefront of everything. Agreement to use a tracker, ‘to keep you safe’, is not something to be introduced when a person is down the rabbit hole of dementia, and in the early stages, not to be used at all.
In my relative’s case, the device was abandoned.
“Those with dementia are still people and they still have stories and they still have character and they’re all individuals and they’re all unique. And they just need to be interacted with on a human level.” -Carey Mulligan