Dying with Alzheimer’s – as undignified as it gets

A YourLifeChoices member who does not wish to be named urged us to alert our community about the need to make a detailed Advance Care Directive (ACD). An ACD is a specific personal directive from patients who have been diagnosed with a disease that will eventually strip them of their ability to make decisions for themselves. He explained why an ACD was vital, and we invited him to share his journey. He kindly agreed. It is World Alzheimer’s Day on Friday.

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My mother was diagnosed with Alzheimer’s in 2001 at the age of 75. She had been physically and mentally active all her life, playing tennis then golf for physical exercise, and solo and then contract bridge for mental exercise. She was a very good bridge player, and achieved the status of national master. This just demonstrates how arbitrary the insidious Alzheimer’s disease can be!

Mum was not just forgetful. Not remembering where you put the car keys is quite common as we age, but forgetting what the car keys are used for is dementia. Mum would meet me at the front door when I came to visit, and could be in a genuine state of shock about something that was on the news. She seemed fearful and was losing perspective as the confusion of Alzheimer’s set in.

Dad, who was a year older, cared for Mum for the next few years as she gradually lost her faculties. This was a hard time for them both, as they grieved together the loss of her personality. They both knew what was coming.

Dad later told me of one particular event early in the disease that was indicative of this process.

They were at some large venue and Mum went to the restroom. Dad waited outside for quite a while, but Mum did not reappear. He eventually asked another lady if there was anyone still in there, and was told the restroom was empty. He didn’t realise, but there was a second exit. He was frantic, and looked everywhere, eventually going back to the car park. Mum had found her way there, and they dissolved into each other’s arms, sobbing for some time.

It was about this time, in 2005, that Dad arranged for Mum to prepare an Enduring Power of Attorney for him, all my siblings and me. Unfortunately, we did not arrange for her to prepare an Advance Care Directive (ACD). We weren’t well aware of all the issues at that time, and had not sought the specialist advice that the Australian Alzheimer’s Research Foundation and various support groups could have offered.

My wife and I suggested to Dad that he go to the local Alzheimer’s centre for support and some respite care, but Dad didn’t seem to think he needed help. I think that was a grave mistake! He might have been able to manage better if he had arranged for Mum to go to day care, to give him some respite from the endless responsibility.

My siblings and I were all still working, and not able to provide as much support as we would have liked. Dad was also wanting to shelter us from the worry and didn’t let on about all of their problems.

Dad continued caring for Mum until 2009. He was 84 by that time, and needed a sleep in the afternoon. Mum would go wandering and would be brought home by a neighbour. Dad’s efforts to lock her in the house only caused arguments, and he finally conceded that he was no longer capable of caring for her. This was just a few months after their 60th wedding anniversary. Dad was inconsolable as I drove Mum to the aged-care facility with him in the back seat.

After two years at the low-care facility, Mum had deteriorated to the point where the staff determined that she needed to be transferred to a different facility where high care was offered.  She had occasional bouts of the so-called ‘Sundown Syndrome’ where her confusion and frustration caused physical outbursts that were not part of her usual character. Also, she would drop her pants in the garden if the need arose, with no sense of embarrassment. My eyes are stinging with tears as I remember this degrading process of deterioration. Mum had lost all of her intelligence, poise and dignity.

This period was particularly hard for my family to come to terms with. The only consolation was that Mum did not appear to be suffering because of her confusion. She was no longer aware of her situation. Dad became quite depressed, as every visit opened the emotional scars afresh, and his grieving never let up.

He eventually conceded in about 2015 that there was no point in him going to visit Mum because she didn’t recognise him, and it only upset him more.

By this time, his own health had declined after a fall in 2013 during which he broke his right arm, and he decided to stay at the aged-care facility where he went for respite care after being discharged from hospital. He started to suffer from vascular dementia, and conversations with him started to become repetitive. He fell and broke his hip in 2017, and died the next day from pneumonia, aged 92. He had an ACD, which guided the family to decline further treatment, something the hospital staff readily accepted.

Sadly, Mum continues to exist in what seems to us to be a haze of confusion. When I visit, she shows no sign of recognition, and can only mumble gibberish. It is years since she has been able to say a coherent sentence. The excellent nursing staff say that she can still make her wishes known with a ‘yes’ or ‘no’, but I haven’t seen any evidence of it. Admittedly, I don’t spend anywhere near as much time with her as they do.

Mum is now 92 and has been spoon-fed for the past few years. Twice she has had bronchitis and has been given antibiotics, against the family’s wishes that she not be given any life-extending treatment. The most recent occurrence was during a holiday period in 2016 when casual nursing staff were on duty. They rang a doctor who prescribed antibiotics after asking if there were any instructions in the medical file. (The doctor was clearly not familiar with my mother’s medical file.)

The relevant instruction was buried behind several pages of other medical notes, and was not noticed by the casual nurse. The doctor then prescribed antibiotics over the phone.

My family has made our position very clear and we have been assured that procedures have been updated to ensure that our instructions about her medical care are placed prominently in her file. I can’t help wondering why they weren’t already, and whether other patients are also given unwanted treatment. Not all patients have family who can confidently challenge treatment provided by a doctor or aged-care staff.

These problems could have been avoided if, 15 years ago, we had arranged for Mum to prepare an ACD with dementia-specific provisions. We could have insisted that she not be spoon-fed, but rather be given palliative care to ensure she didn’t suffer while she then, naturally, starved to death.

I remember the time, decades earlier, when Mum, after observing a patient with dementia, had said to me: “Knock me on the head if I ever get like that, won’t you?”

We can already prepare an ACD to state that we don’t wish to be spoon-fed once we lose the ability to feed ourselves. Indeed, I have that in an ACD myself, which I have recently uploaded to my public record on MyHealth.

Dementia-specific ACDs can be obtained from Dying With DignityVictoria. I hope that one day the law will enable all Australians to determine, while still competent, that once this directive is activated and we are to be palliated as we starve to death, that we can instead be given a much quicker release from the torment of many years of dementia.

I recently read a submission by Alzheimer’s Australia Victoria, A Good Death is My Right, People with Dementia and Carers Response to the Voluntary Assisted Dying Bill Discussion Paper.

The experiences that many carers have detailed in this paper show what my poor mother may yet have to endure.

“Five days before [my mother’s] death, she lost the ability to swallow. Her death was inhumane. It was cruel. Her body took five days to shut down. She lay in her bed and recoiled each time she was touched. She moved her head from side to side as if she was seeking a means to finding relief. Her limbs appeared to spasm as she screamed in agony. This didn’t happen once, it happened over and over again, night and day. The palliative medication did not stop the pain. Nothing alleviated the torment she was enduring. Nothing.” (from the daughter of a person with dementia).

Below is part of the executive summary of the Dementia Australia Victoria Response. Surely that should be the ‘ideal’ that our society must aim to achieve.

At Alzheimer’s Australia Vic we believe that it is possible to live well with dementia. We have witnessed many examples of people continuing to live happy, purposeful and meaningful lives long after a diagnosis. We also acknowledge that dementia can lead to profound physical and cognitive disabilities which some people may find contrary to a good quality of life. Our organisation is neither for nor against assisted dying. We do advocate, however, that all individuals should have a choice.

The submission concluded:

Dementia is an incurable, terminal condition. Alzheimer’s Australia Vic believes that people with dementia have the right to access voluntary assisted dying if they choose, with the right support, frameworks and safeguards.

* On 29 November last year,Victoria became the first Australian state to pass legislation allowing voluntary assisted dying. The law gives anyone suffering a terminal illness, with less than six months to live, the right to end their life. The law is set to come into effect in mid-2019.

Do you have an Advance Care Directive? Do you believe people with dementia or Alzheimer’s should be included in the Voluntary Assisted Dying Act?

 

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