My companion is beginning to bite

So here’s one about living with my brain disease, aka dementia.

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I’ve noticed changes recently. Not huge, but noticeable.

And I’ve also caught myself thinking that before too long I may be more significantly affected.

Till now I have just taken it on the chin. It’s just another disease or illness to add to my growing list. I’ve got on with living and doing what I do, not hugely affected by IT. 

IT has been my companion rather than my enemy. IT has brought me new friends and fresh ways of thinking about life. While I do have a disability I have not felt disabled.

But things are changing. 

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My balance is deteriorating. When I close my eyes standing I quickly wobble. Whatever I do if I don’t touch something to give me a reference point I wobble and get close to falling. Might be my elbow against the shower unit. That’s enough. 

I am more clumsy. This weekend we had some people staying. I knocked over a glass of wine by not lifting my hand enough away from it, and I often come very close to knocking cups and jugs on the floor. I’m just less good at judging distances and making quick calculations to avoid things.

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Uneven floors and patterned carpets are suddenly a real problem for my balance. I cannot calculate quickly enough to make adjustments before I put my next foot down.

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Carpet patterns which I used to cope with leave my eyes swimming and fuzzed. Patches of shade on floors that I don’t know well can also cause just a stumble as I walk. 

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My articulate use of language is still intact, it’s my physical movement that is most affected.

But my hearing or decoding of sounds is worse. I am forever having to ask for a repeat, often several times. And I’ve booked myself a hearing re-test so I can get my hearing aids adjusted if necessary.

I was using a shower over a bath in a premier inn last week. Its the first time I really felt unsafe. No grab handle. Narrow bath. Just a curtain between me and the floor outside. I am going to ask for a disability friendly room in future, with a walk in shower.

So the reality of living with dementia is starting to require a few changes. A few alterations. Thinking more about what I do as I do it. Less autopilot. More manual flying.

My companion is beginning to bite.

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I’ll look the other way

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The NHS is 70 this year. Hurrah.

The NHS is starved of funding. Pooh.

We must give the nhs more funding this year to show we value it.

(We have starved the nhs for seven years.)

Cancer survival rates in the UK are below those in Europe.

Therefore, we must put more money into cancer diagnosis and treatment.

Let’s double cancer spending from £7.5bn to £15bn.

Ahem.

What is the biggest cause of death now?

Dementia.

More people die with or from dementia now than any other disease in the UK.

So why don’t we give dementia more funding?

For research. For post diagnosis support. For admiral nurses everywhere. For dementia navigators everywhere. For universal training for all NHS and care staff.

Oh no, I forgot, it’s that invisible illness that everyone is frightened of and would prefer to ignore and forget.

It’s dementia, and there’s no cure.

It’s dementia, that disease that makes people into silent, staring, ghosts.

No, why would we want to spend more on that?

Ahem, again.

850,000 people with brain disease.

Another million family carers.

Research break throughs on the horizon.

People living with dementia frightened to leave their homes in case they get lost or cant remember why or fall.

Family carers in crisis unable to get support and respite. At their wits’ end. Hell on earth.

Ahem

We have poor cancer outcomes. We don’t meet treatment targets. That’s what the public wants. That’s what we’ll give them. 

Oops…I mean that’s what their taxes will give them.

Dementia, MS, Parkinsons…weeelll…those people will die whatever we do. There’s no cure so…whats the point?

And by the next election, if we last till 2022, which I won’t but someone might, we can sing a great song of having given a hundred thousand people an extra couple of (treatment ridden) years of living.

Bring me the sick, the scared, the broken and the dying, and I’ll…

Look the other way.

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Polly, you’re wrong; see the person not the dementia

Polly Toynbee has rcently written two pieces in The Guardian about assistied dying and dementia. In May she wrote in relation to Katherine Whitehorn, a famous former columnist with The Guardian.

in March Toynbee also wrote about assisted dying and the right to choose, with considerable comment on dementia.

Here I have quoted selected paragraphs from the two pieces and added my observations on what she wrote.

Frankly, I am appalled at the attjtudes that a respected commentator has displayed, and the way she reinfoces the myth and stigma around dementia. So here goes…

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May article

‘Katharine [Whitehorn] is now 90, living in a care home, suffering from Alzheimer’s, with little understanding left, no knowledge of where she is or why. She often doesn’t recognise people, can no longer read and curiously sometimes talks in French, not a language she knew particularly well: she will never read or understand this article. In other words, she is not herself. Her old self would not recognise herself in this other being who sits in the care home dayroom. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.’

No, she is still the same person. And we must engage with her as a living, real, person. Yes she has advanced brain disease which has hugely reduced her capacity to react to her surroundings and to make decisions, find words, but she is not living dead. 

‘But the greatest horror of all is Katharine Whitehorn’s fate, not dying, yet dead to all that makes life worth living.’

This is a patronising view of other people’s lives. Of course its horrid, of course she cannot enjoy life as she used to. But she is still there, inside, a kernel in a nutshell which we find it impossible to see through.

All people are different and find different things that make their lives worthwhile. And this changes over one’s life. As you become incapacitated by diseases you change, you enjoy what you can still enjoy, and imagine back the memories of things and events you loved doing when younger.

What people with healthy brains cannot understand, is how to get into the more and more hidden world of the person with dementia. And you cannot necessarily see when the person is happy or not. You have to spend time with them, understand tiny changes in behaviour.

‘Her sons say without doubt that if the real Katharine could see herself now she would be horrified, never having wanted to end up as she is. Indeed, most people find the prospect of this ending a negation of self, denial of a life’s work and character, a mortifying indignity no one should suffer. Who wants to leave family and friends with a final memory of themselves as a vegetable, a distortion, an alien being?’

This is horrible nonsense, and Toynbee is perpetuating the myth. Disease, sickness, growing old…these do not negate a life’s work. They may make “you” think what was the point, but that’s “your” problem and perception. 

Vegetable? Distortion? Alien? These words are destructive, judgemental, and dismissive of a person as a human being. Again, they perpetuate the myth and stigma.

We go through the seven ages of life. Each is no more worthwhile or valid than another. Brain disease, cancer, COPD, heart failure…they are all diseases that reduce us and kill us. But they do not take away our humanity, unless those around us take it away.

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Having said all this, I believe that assisted dying should indeed be available. But how can this be done if you have lost capacity? The living will or advance planning document should be used and followed.

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March article

‘Who doesn’t live in dread of losing their mind before their body gives out? The prospect of joining the swelling ranks of those with dementia who are warehoused in miserable nursing homes appals most people. So does the thought of being an intolerable burden to their family. But campaigners scrupulously avoid talking about the wider social landscape, the rocketing numbers of those with dementia outliving their brains at vast personal and social cost.’

So…intolerable burden…warehoused…losing your mind before your body…vast personal and social cost…Toynbee is just perpetuating the myth and stigma. ‘Kill them to put them out of their misery and to save us loads of money.’ Yes, we don’t want to be a burden, but we are people. Improve the care, change attitudes…so we can and do look after each other.

Cancer, copd, coronary disease, diabetes…all cost huge amounts to treat and to provide care as people move towards dying. We don’t say that is a waste, or an intolerable cost, or a burden. What makes brain disease different? It’s the fear that the media perpetuates, of dementia. Demented. Mad. Idiot. It’s still there, if you believe Toynbee.

‘Dementia is now the leading cause of death, the first time it has caused more deaths than heart disease. That stark fact should frighten us all, as the worst possible death is now the most likely.’

Why is this the worst possible death? This is nonsense, hysterical nonsense. Death from cancer is horrid, but it’s life. The journey towards death from copd is incredibly debilitating and crippling, but it’s life. Nowadays death from long term disease is or should be controlled, pain free, calm. Regardless of which disease(s) gets you.

The trouble is that we do not talk about dying…we fear it…we fear pain…we fear what we don’t understand. 

‘Hard truths will not be faced. How do we pay for the massive increase in care for those with dementia? To do it decently is phenomenally expensive. To do it badly is brutish cruelty. What priority should we give their care over, say, improving the retreating life chances of children? No one is meant to mention these tough choices in the same breath as the right to die, but of course they are closely connected.

If, like me, you have watched a beloved parent die in needless pain, longing for an end the doctors denied her, then you know this is a personal right everyone deserves. Evidence from other countries shows that even if people don’t use that right, their fears are put to rest knowing that, if terminal pain becomes unbearable, the choice is there. Denying that choice is sadistic. But beyond terminal illness, the fear of dying of dementia is terrible too, and a living will should allow us to end our lives to avoid that.’

So Toynbee claims authority because she watched a parent die in pain. That is not logical or justified. Why was that pain not controlled? Death is never going to be pleasant for those who watch and who lose loved ones. But that doesn’t mean we should kill people so we don’t have to feel pain and upset as they die. 

Nor does cost justify killing people. That’s pretty much nazism.

A living will, power of attorney…these are essential. People should have the choice of treatment or not, and these choices should be respected by doctors and lawyers. That may need a change in the law.

But when Toynbee speaks to 20,000+ readers about fear and dread and becoming a vegetable, a distortion, alien…that demonstrates her own lack of understanding, empathy and willingness to “see the person, not the dementia”.