Diary Entry: 1 July 2017 The Horror of Hospitals

Hospitals are ghastly places.  Unless, of course, medicine is your vocation.  Or you’re watching re-runs of “Grey’s Anatomy”.  (In which case, I am so with you!  Fab friends, dialogue of note, seriously hot medics aplenty and steamy sessions behind closed doors.  Everything a girl wants.)

But the reality is I’ve spent too much time in hospitals – way too much for someone my age – observing my very dearest, closest people suffer.

That very aura of sterility makes me want to puke.  Those linoleum floors concealing a multitude of superbugs.  The hum of extra-terrestrial machinery, attempting to keep humans alive.  Signalling the slowing down of life.  The sheer scariness of it all.

And don’t let me get onto the topic of incompetent staff in South African hospitals.  I would bore you to death.

So, if I feel like this, imagine how the frail and elderly feel on being admitted?  Like, maybe, they might just be on Death Row?

Now, take that fear and DOUBLE it.

You finally start to get a sense of what a hospital does to someone with dementia.

The Expert’s Opinion

I found the following quote by my mother’s geriatrician, Dr Stanley Lipschitz, President of the South African Geriatrics Society (SAGS):

“Hospitalization is a major risk to the precarious homeostasis of the Elderly and should only be resorted to for the treatment of acute, severe or Life threatening illness.”

I could shoot myself for allowing my mother to be admitted to Milpark Hospital.  Next time, I’m going to let her die at home.

Fainting in the Elderly

What happened is this:  On Monday, Talent called out to me with a note of panic in her voice.  My mother was semi-conscious on the toilet!  I dialled the ambulance service, terrified that she had suffered a stroke.  While I was speaking to the operator, Mom started coming round.  Long before the paramedics arrived, she was fully conscious.  They were convinced she had had a vasovagal syncope episode (fainting episode to you and me) and insisted on taking her to casualty.

According to the Mayo Clinic, “Vasovagal syncope occurs when the part of your nervous system that regulates heart rate and blood pressure malfunctions in response to a trigger…”  This causes “your heart rate and blood pressure to drop suddenly. That leads to reduced blood flow”, (hence less oxygen) “to your brain, causing you to briefly lose consciousness.”

I’m no expert, but I’m not totally unfamiliar with ‘vasovagal syncope’ and ‘orthostatic hypotension’ (low blood pressure), which are common causes of fainting and falls in older people (Read more on the NHS’s website.)

Over the last 6 years, Mother has had countless ‘unexplained’ falls.  I’ve lost track of how many times I’ve heard her head hit the ground with a resounding crack.  The cardiologist I took her to 3 years ago identified some type of arrhythmia, but nothing to justify a pacemaker.  I’ve had to learn to live with my ears behaving like a bunny rabbit’s antennae, always listening out for the next – potentially fatal – fall.

For myself, I’m not sure I can handle the excitement of old age:  If you stand up after being seated or lying down, you can faint.  If you sit down on the loo and strain to have a bowel movement, you can faint.  Both instances can also lead to death.

Admittance to Hospital

Anyway, back to my story:  The doctor on duty in Milpark’s emergency department was a young woman.  I whispered to her that my mother had dementia AND that I would like to avoid having her spend the night in hospital.  Standing half a metre from my mother’s bed, with an incongruous lack of sensitivity, she barked out loudly “Dementia?” When I protested, she replied “We don’t hide anything here.”

The stupidity and insensitivity of laypeople with regard to dementia is one thing.  But coming from a medical professional? It’s completely unacceptable!  What did she think?  That if a person has dementia, he /she has no feelings?  That he / she understands nothing at all?  Gaps in the brain are not the same as no brain at all.  The average 88 year old has very little but death to look forward to.  If they’ve been diagnosed with dementia, is it really necessary to rub this in too?

Dr Inexperienced ordered a barrage of tests (chest X-ray, ECG, CT Scan, blood tests) and strongly advised me to admit my mother overnight.  My gut told me this was the worst thing I could do.  But…, I chose to succumb to her Higher Knowledge.  Especially when she said that the cardiologist would see my mother that evening.  This had to mean Mom was on the verge of heart failure!  Plus a neurologist would see her during his morning rounds.

Mom was already tucked up in the ward, when I learnt that the cardiologist would only visit in the morning.  I should have dragged her home there and then, but it was already past 7.00pm and we were both exhausted from the stress of the whole afternoon.

Hellooo Dementia Land!

The next day, I received a call from the compassionate manager responsible for the nursing staff in my mother’s ward.  He wanted to know whether there was anything he could do to calm my mother down.  She had fought off nurses thinking they were trying to attack her!  She had tried to escape from the ward.  She had even tried to bite the nurse who prevented her from running away.  He explained they were not set up to care for dementia patients.

I found my mother chatting in Greek to a kind Indian family, in a room far from where she was supposed to be.  They hadn’t understood a word she’d said, but she felt safe with them.  Mom was so relieved to see me!  And she was terrified that her attackers might turn on me!

The nursing staff manager helped me track down the cardiologist, who confirmed that my mother should never have been admitted.  He was so aware of the effect a hospital has on the elderly and on dementia patients.  (And not to scare you, but I’ve subsequently learned that even a younger, “sane” person, can experience dementia as a result of a hospital stay.)  There was nothing he could do for her heart and he agreed to sign the release forms, despite the fact that the neurologist had not seen her.  It was best to remove my mother from the hospital as fast as possible.

On the way home, my mother kept describing her horror at being attacked.  She questioned how those attackers had managed to get inside the hospital.  She told me I had to report them to the police so that nobody else would suffer as she had.  I reassured her that I’d given all the information to the nursing staff manager.  He had immediately called the police and they had already arrested the perpetrators.  She was so delighted to hear this!

I hoped that having an afternoon siesta in her own bed, at home, would help my mother’s state of mind.

Instead, that evening, for the first time ever, she spoke about her brothers as if they were alive.  She asked me whether Dino and Louis were going to join us for supper.  When I said “No”, she said “I suppose they will be getting back late?”  I said “Yes.”  “Please make sure you keep a plate of food aside for each of them, and also make sure they each get equal helpings,” she kept repeating.

I had to control myself, to stop myself from weeping in front of her.

Diary Entry:  24 September 2107

I’m still mad at Dr Inexperienced.  This was the very first time that any of us saw my mother enter Dementia Land for a WHOLE day.    I wonder whether Dr Inexperienced has the faintest clue.  She carries on in a role of authority, ‘treating’ patients, while I have to deal with the long-term ramifications of her ‘advice’.

And I’m still mad at myself for not listening to my own gut. It’s not enough that my mother lost her sense of reality while I was overseas.  Why did I have to put her through this hospital scenario which pushed her so much deeper into Dementia Land?

It has been BEYOND FREAKING PAINFUL dealing with this.

What has your experience of hospital and your dementia loved one been like?  Please let me know.  For your sake, I hope very different to mine.

4 comments

  1. What a horrifying experience, my darling Dina! Poor Gogo! I would have lodged an official complaint against that insensitive asshole that insisted admitting her. Tassia had been so much in and out of hospitals – with all the breakages and the operations she had – that the personnel did not hold any horrors for her. When she got worse, dementia-wise, she always had a private nurse by her side. Towards the end though, she would keep calling “Μαμά, έλα! Μαμά έλα! Μαμά άνοιξε!” with agony in her voice and eyes shut. Once, (it was about September – she died on 29th November) when she was calling like this, I went near her and grabbed her by the shoulders. “I have come!” I said, “What do you want?” She opened her eyes, fully “compus menti”, instantly recognized me and said: “To give you a big kiss!” And we hugged and talked for a while like old times…

  2. Dina, you can’t blame yourself every time something goes wrong. Things will go wrong, and they will deteriorate, but none of this will be your fault or even in your control. The only thing you can do is love her the way you do, and manage the situations the best way you can, as and when they arise. Try to find a balance between your heart and your head – this is your intuition – and then follow it. It won’t always be exactly right, but it will be better than most other “logical” options.

    1. Thanks Vickie. This whole journey seems to be a continuous battle: visceral, instinctive emotions vs. rational, logical side. At the end of the day, I do know that love conquers all. So as long as my decisions come from love (which they do), they are the best solutions at that point in time.

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