Dying with Alzheimer’s – as undignified as it gets

An Advance Care Directive is vital to ensure this slow death is not your fate.

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.

•••

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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    COMMENTS

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    Swinging voter
    16th Sep 2018
    10:56am
    A very sad story and familiar to many people. The law will say euthanasia can be accessed by mentally able people with less than 6 months to live, which controversially seems to eliminate dementia, until very late stage, as a reason for ending a life. I have seen someone in a hopeless situation die of "natural" starvation (via withdrawal of medicines together with the inability to feed himself, with morphine assisting). Being personally informed by seeing "natural starvation", (without hydration) I felt that was a hideous, cruel death. As for refusing antibiotics. Infection can create dreadful pain and may not lead to a rapid passing. I could not refuse anything that makes a dying person less comfortable. Refusal of drugs that are life-extending, e.g. blood pressure, diuretics and many and varied others, yes I would refuse those. The last week of a loved one's life can be pure hell. Palliative care is not always what the anti-euthanasia mob crack it up to be.
    Puglet
    16th Sep 2018
    1:49pm
    You are correct. Starving a person by choice or force is incredibly painful and takes about 3 weeks. Sadly this is the only choice people who want to die have. Nurses and doctors working in nursing homes can all recount harrowing stories of people who are ready to die ‘turn their faces to the wall’ and refuse food etc. you are also correct about palliative care. It is only available to a few. When it works it is brilliant but it may not work. Few units will accept people with advanced dementia -consent, behaviour, they are not dying of cancer etc. unless a person is capable of providing consent then palliative care is not for them. Similarly people with motor neurone diseases aren’t eligible for palliative care. Not being able to move, communicate, breathe without a respirator or swallow must surely be one of the most appalling ways to die and yet little is done to support a wish to die - consent etc.
    tikiroo
    16th Sep 2018
    11:35am
    So, I need to ask ... ....
    Why is this following extract different to 'assisted death' with meds ? -IF- I choose "ass-sted-death-by-meds exit" I am refused, but it is ok to starve me to death ?
    QHOTE:
    ... "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.
    Just wondering. Frank
    OzGKW
    16th Sep 2018
    8:15pm
    I suspect that the author is suggesting that a quick 'assisted death' would be more humane than starving to death over days or weeks, once a dementia patient has forgotten how to eat.

    It is already legally permissible for us to prepare an ACD (whilst mentally competent) which states that we don't want to be spoon-fed when our later demented body forgets how to eat, but that will force us to die horribly from starvation. That is not 'assisted dying', but rather allowing nature to take its course, without keeping dementia patients alive for years by spoon feeding. It is also inhumane!

    Given that we will then be dying imminently anyway, why shouldn't it be possible at that stage to have a more humane 'assisted death'?! The timing would be triggered by the natural dying process, but would not be inhumane.
    BuddaJoy
    16th Sep 2018
    11:35am
    Yes if the person who is ill makes the decision without any pressure from family or relatives or others. Research has shown that often people choose to die because they feel they are a nuisance or their families are fed up, Subtle chats about what would be best for the patient " you don't want to go on like this do you" or "do you think you want to just not go on" are terrible questions when someone may not be ready to go.I have experienced it with my own family, in one instance a nephew who had suffered a stroke and was in intensive care was told by a nurse " just cut off the treatment, you don't want to spend the rest of your life with someone wiping your a*** do you" I was furious and told her so. He elected the next day to stop all treatment. I sat by his bed and told him he was crazy to give up.Other friend also did the same. Some days later he started up treatment again and is now living life to the fullest, albeit with some disability, but enjoying his second chance. I realise some illness's are terrible and personal wishes should be adhered to but I sa, be careful what you wish for.
    BuddaJoy
    16th Sep 2018
    11:38am
    PS: If palliative care it not always what the ***anti-euthanasia mob*** crack it up to be...then it's about time we got off our haunches and asked the Government why they would rather see us die than fund some research into real palliative care. I know don't you...$$$$$$$$$$$$$$$$$
    OzGKW
    16th Sep 2018
    8:32pm
    People in palliative care are about to die anyway. The whole point of palliative care is to keep the dying patients as 'comfortable as possible', an admirable objective! However, research into better palliative care will not stop people dying!

    The best palliative care in the world will not prevent ALL suffering. Specialist palliative care doctors (who are candid) will admit that about 5% of their patients die unpleasantly, despite the best care available. It is this 5% that need the right to choose a quicker passing.

    In countries which already have 'assisted dying', it is part of the palliative care process, not a competing option. Palliative Care specialists do everything they can to keep their patients comfortable, but when that is no longer possible, the patient can request that the suffering end quickly. Palliative care facilities have not decreased in countries allowing 'assisted dying'. If anything, they have improved to show that 'assisted dying' is NOT considered a cheaper option. There are lots of fear-mongering stories by people in Australia who have a religious objection to 'assisted dying', despite the fact that successive newspolls show that over 80% of voting Australians want this choice, and this majority includes Christians like myself. Look at the website: christiansforve.org.au
    Why should people who are in agony have to suffer because other people don't like the idea of 'assisted dying'. If you don't like the idea, you simply don't ask for help.
    Bribri
    16th Sep 2018
    11:42am
    No way for euthanasia.I was a nurse in the 1990's. I have seen it happened where an elderly lady had cancer but also had all her faculty.It was a private hospital and they kept on injecting her with morphine more times then she needed. I came on duty passing her room where she was in with her 2 daughters and the there's were crying. I went in and asked what is going on? And the old lady answered me: I am not ready to go but they keep injecting me with morphine. Then the daughters beg me to see if I could do something about it. So I went to talk to the nursing sister and her answer to me was: "if you are not happy about it go talk to the matron. So I went looking for the matron as it happened in the hallway opposite the lady's room. So I told her what the lady and her daughter's told me and wanted. The matron was from the USA. Talking back to me as loud as she could.:" Nurse mind your own business and get on with your job." My answer was:"But matron the lady says she is not ready to go just yet. She said she wants to go when she is ready to go". Matron answer to that and very loud so that they would hear was.: " Nurse we need the room and we cannot keep people who are going to die alive. We need the rooms for other patients". To which I answered by pulling my cap off and throwing it at her feet and telling her.: I made an Oaf when I became a nurse to try and do my best to save patients and not cut their lives short".and also I told her I refuse to work in that type of hospital" and I walked off leaving my cap at her feet.Therefore this is ONE reason I will always refuse to go into a nursing home. I just turned 77 years old and I can still see this wonderful old lady with her 2 daughters in tears. They have been stamped in my memory for ever.
    Puglet
    16th Sep 2018
    1:33pm
    What you have described is not Euthanasia. Assisted dying/Euthanasia can only take place with consent of the person. It takes weeks even years for the ‘consent’ to be processed. Usually the person has to give consent again immediately before the medications are given. The person choosing death has to take the medicine or if it is an injection turn the ‘tap on’. What you are describing is palliative sedation/terminal sedation, a completely different thing but still requires consent. I would be surprised if your story took place in Oz becausein the 1990s nurses didn’t wear caps (except Qld). We stopped calling people sister or matron in the 1980s! What you have described is illegal and so instead of throwing your cap on the floor you should have reported this incident to the Nurses Boardand the Police because at worst it’s attempted murder. Did you?
    OnlyDaughter
    16th Sep 2018
    7:33pm
    This is still happening in Queensland public hospitals. My Dad broke his hip in 2016,and he got an infection which is known to be endemic in that hospital. He was sent to palliative care. The family wanted to move him to a nursing home and continue antibiotic treatment but the doctors refused,saying this was not viable and he couldn't stay in hospital any longer. Against his and our family's wishes they dosed him up on fentanyl and sedatives. He was conscious, lucid and talking to us one moment, and two hours later he was unconscious. When we objected at what they were doing, they cut back the dosage and he was back with us but they upped the dosage the moment we left. When we came to visit the next day, he was comatose and according to his record, not due for further medication for four hours. We took twenty minutes to have lunch and when we returned his condition had deteriorated significantly. A check of his chart indicated that they had medicated him, hours ahead, whilst we were at lunch. It had obviously been planned that we would be there when he died, because he died twenty minutes later. Euthanasia, even against the wishes of the family, is widely prescribed in Queensland public hospitals but never acknowledged.
    Puglet
    16th Sep 2018
    8:44pm
    Only daughter what you describe is not Euthanasia it is called palliative sedation or terminal sedation. Euthanasia requires signed and verbal patient consent. Giving a patient enough narcotics and sedation for them to die eventually is unfortunately quite common. It should be done with consent and I am sad for you that you didn’t know because it is probable you didn’t say goodbye.
    Jenny
    16th Sep 2018
    12:48pm
    A person who is at the final stage of Alzeimers is just a body functioning at the very basic level of survival, with little or no ability to control that body. What created the person has already died ie the brain. There is just enough left to keep physical processes going. There is no dignity or pleasure remaining in that life. To force feed and medicate in order to keep the body alive is to go against the forces of nature, since no good outcome is possible.
    Swinging voter
    16th Sep 2018
    2:47pm
    In his/her last stages of painful illness it's been said the only way to guarantee a patient doesn't endure terrible suffering is for him/her to be asleep, i.e. anaesthetised. Morphine does not put patients into a deep sleep. Some patients experience dreadful side effects from morphine during their lifetime, but in last stages can be unable to transmit to medical staff that the morphine being given is causing them immense discomfort. This is why I agree that people should write down all their wishes. Where appropriate, experienced palliative care specialists can call for the administration of combination nembutal/propofol which anaesthetises the patient.
    rtrish
    16th Sep 2018
    3:35pm
    I had an Advance Care Directive written this year. However I did not think of the dementia-specific situation. It took quite some effort and a solicitor to write up the document I have legally. I hope that will be enough in the meantime, until I can afford to review the documents and add the dementia-specific wishes.
    Puglet
    16th Sep 2018
    4:15pm
    Hi I wear a medic alert bracelet that shows I have a Not for Resuscitation and Advanced Life Directive. My doctors took my requirements as a personal affront which it wasn’t. I think most medical/hospital personnel and even some next of kin would ignore your ALD if you had advanced dementia because you can’t give informed consent so I wouldn’t worry. IF you know that you are developing early Alzheimers but you still have the cognitive faculties to give consent then this is the time to act on Plan B or even C or D. Both my parents had NFR and ALDs documented in all the records. Their wishes were ignored by a nursing home and a hospital because of the religious beliefs of the home and because of medical clinicians’ ‘ethics’.
    Charlie
    16th Sep 2018
    6:32pm
    I had an elderly relative who got a loan from the bank using the house as security. This was after she had maxed out the credit card. Obviously she had no means of paying off either.

    Later she was diagnosed as demented but it had been happening for quite a while.

    There just seems too many banks and care organisations are in a hurry to take property away from the elderly.
    Tzuki
    16th Sep 2018
    7:33pm
    I feel for the person who wrote this story. I have just gone through the worst 3 months of my life after my already dementia-affected father fell and fractured his hip, and it was a swift downhill run from there. He eventually starved himself to death. He refused to eat and could not be force-fed anyway as he had an Advanced Care Directive, so I did not need to watch him suffer for long but it was still an extremely stressful and emotional experience. At least he is not lingering in his dream world and suffering anymore. The carers were amazing and cared for him very well.
    ekbg2002
    3rd Feb 2019
    9:08am
    Yes I do and I am under 60 but have health problems. I ensured mum and dad had one, and doctors were fantastic, it has to be signed by your gp initially, but when it was needed in a hospital, residential facility and pall care - all mum and dad's qualities of life and not wanting intervention only pain free, quick as possible were all taken into account. On a fall one parent ended up in hospital, how wonderful to have a doctor ask if she had one in place, which I presented, he rang the residential facility and said there is nothing we can do except keep this person out of pain, and give her quality of life with things / people she loves surrounding her in short time left. Absolutely ensure you have one no matter what your age.


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