Dying with dignity with dementia

My father Alec, who died peacefully at 89 in his sleep, had dementia and lived in a nursing home for

My father Alec, who died peacefully at 89 in his sleep, had dementia and lived in a nursing home for the last seven years of his life.

After Mum died, he lived alone in their Mittagong home for about a decade, but as he moved into his 80s, we noticed that many ordinary tasks were getting beyond him. He could no longer operate the television, stabbing away randomly at the keys on the remote and unable to follow the simple large print step-by-step instructions we’d left for him.

Other than tea and making toast, cooking was too challenging so he ate most meals at a local truck stop hamburger joint around the corner from his house. My sister and I in Sydney would get occasional confused phone calls where his frustration was obvious but the precipitating incident forgotten as he called to ask for help about something he then couldn’t recall.

Finally, a local widow he had been seeing for a few years (“we deny each other nothing” she told us more than once) apologetically told us that his confusion was getting too much for her.

Both my sister and I worked full time and we had no spare rooms in our homes, so we very reluctantly began the search for a suitable nursing home. We found one about five minutes away from my sister’s house where he had a pleasant self-contained two roomed flat with a garden view.

From the day he moved in, dad complained that the place was full of old people, even though he was among the oldest. He was a private man and kept mostly to himself.

My sister and I would have a ritual call to each other every Friday to see who’d have him home Saturday, and who would take Sunday. He’d go with us to shops and cafes, but mostly liked just sitting on the lounge where he would try to read the newspaper. We often saw that he was holding it upside down. If friends came around to our place, they found him always well dressed, congenial and up for a chat.

We started to get increasingly bizarre and panicked phone calls from him at the nursing home. He was English and moved to Australia in 1949. “Where are you?” he’d demand. “I’m here with my bag packed and the plane to England will leave soon. The house has been taken over by people who are not looking after it, and I’ve got to get over and sort it out.”

We’d call him back after 20 minutes and he would have no recollection of his earlier panic. I would sometimes purposefully make the same comment to him to try and understand the size of the mental prison in which he lived. Five to ten minutes after remarking to dad that we’d need to soon put a brick on the heads of our two teenage sons to stop them getting too tall, I’d say it again. He never once remarked that I’d already said that.

One night at 1am the Bowral police called me. They had found him wandering in the backstreets of the town, confused after getting himself to Central and catching the train. I drove the 90 minutes down from Sydney and found him contentedly drinking tea with the night duty police. I gently asked him what he was doing there, but it soon became obvious he didn’t understand the question.

At Bondi beach one day, I went to the kiosk to get him an ice cream. When I returned he’d gone from the bench where we’d been sitting. He had hailed a taxi, but couldn’t say where he’d wanted to go and was taken to a police station where they traced him from his wallet.

We twice brought his last living sister Rose out from the Isle of Wight to stay. They would talk for hours in remarkable detail about their life together in Portsmouth before he left England.

On one occasion when I was alone with him, he said to me tearfully that his life was awful, that he couldn’t get anything straight in his mind and that he had nothing in common with the other residents. When he melted a plastic electric jug by placing it on the cooktop, he was moved to a heart-breaking tiny, bleak room in a secure section of the nursing home.

But in all this, across his gradual decline, he rarely seemed sad. My sister often made the same observation. He took great pleasure in food, dancing with my wife to country music like Hank Williams in our living room, watching the passing parade of people in public places and visual video feasts like Baraka and Powaqqatsi, drinking in the ambience of family dinners, and most especially, in his beloved whisky.

On his arrival from the nursing home around 10am, we’d offer him tea or coffee. He would pause and then ask a little hesitatingly if he might not have a small tincture. We’d oblige and then notice him topping up several times before he dozed off for a midday nap.

One day the matron at the nursing home took me aside and told me earnestly that she wondered if I knew that dad had a drinking problem.

I said I knew he liked a drink, but what was the problem? Was he endangering others, rowdy, abusive? She looked at me hard and explained patiently that (at 88) he might become addicted. I told her that he could have as much whisky as he wanted.

On his last day, my brother-in-law Paul drove him to Picton where they had a counter lunch and dad drank a schooner. He went to bed that night and was found dead in bed the next morning.

Dad’s dementia was not profound. He knew who we were, although was often confused about our children. He dressed himself impeccably in a coat, collar and tie every day regardless of the weather, was never incontinent and right to the end, could hold a conversation about banalities. He was always moved by television news of tragedy.

One evening when he stayed overnight, he silently wandered in the dark into our bedroom, where in flagrante delicto, we failed to notice him until he asked just inches away, “Is that you Si?” There was no recollection in the morning.

I’ve long been an advocate for voluntary euthanasia and am an ambassador for Dying with Dignity. I edited a book on the views on it of 63 prominent Australians in 1995, when the Northern Territory’s chief minister Marshall Perron had just introduced his bill for the brief period that it became law before being overturned by Commonwealth legislation in 1997 that effectively removed the rights of Commonwealth territories to legislate.

The recent film Last cab to Darwin dramatised the case of one man who thought he wanted to be helped to end his life.

Choosing when to go is a common conversation for baby boomers as we move into our final decades. I’m always quick to say that I never want to move to a nursing home, and will take steps to end my life at a time of my choosing should I ever find it not worth living. Such decisions seem relatively uncomplicated when I contemplate being given a terminal diagnosis late in life or being told that I have a disease like motor neurone disease.

But many of us will not be given such a diagnosis. Dad slipped into increasingly obvious dementia over ten or so years. It’s hard to know what he perceived about his decline. He never talked about ending his life. He had many long hours of joy in the years he lived with his deterioration. He certainly died with dignity, but it could have easily been different.

The gradual but very unpredictable realities of cognitive decline are one of the most challenging that anyone open to ending their own life will face.

Alzhiemer’s Australia lists the following facts about dementia in Australia today:

  • More than 342,800 Australians live with dementia
  • This number is expected to increase by one third to 400,000 in less than ten years
  • Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050
  • Each week, there are 1,700 new cases of dementia in Australia; approximately one person every six minutes. This is expected to grow to 7,400 new cases each week by 2050
  • There are 24,700 people in Australia with Younger Onset Dementia (a diagnosis of dementia under the age of 65; including people as young as 30)
  • Three in ten people over the age of 85 have dementia
  • An estimated 1.2 million Australians are caring for someone with dementia
  • Dementia is the second leading cause of death (the second leading cause in women) in Australia and there is no cure
  • On average symptoms of dementia are noticed by families three years before a firm diagnosis is made.

    Have you been affected by dementia in your family?

    ———————————————————————————The Conversation

This article is by Simon Chapman, Emeritus Professor in Public Health, University of Sydney

This article was originally published on The Conversation. Read the original article.

  1. I read this with tears in my eyes. I wish my mum, who died with Lewy body and Parkinsons dementias could have had such a peaceful end. So hard for the family and so hard for the family. Mum and dad moved into a care home together as my father could no longer care for her as her dementia was fast and brutal. She died last May. Dad is still in care as, although he is of sound (ish) mind, his body is failing. I’d like him to come live with us but he feels he is settled where he is and that the burden of caring for him would be too great. He is not happy, just settled and I guess, resigned. We are taking every step we can to ensure that if and when we need help, my husband and or I will be able to afford to have carers come inhouse. It might not end up that way, but it’s the goal.

  2. My Mum was in a nursing home for only 7 months. She did not want to be there but there was no choice. I often wished she had dementia as then she would not be aware of what was going on. Sadly she was alert and the pain of knowing it was her last move was devastating. I work with dementia patients and I see how happy they are in their own world. As sad as it is they still can enjoy life in their own way. Love them.

    • My Aunty was the same only she did have dementia and was still very aware and died of depression, it was awful because there was nothing we could do, she needed high care and none of us were equipped to help her

    • Michelle it’s a blessing that they don’t know what’s going on around them and perhaps you are right – they seem content in their own world but I still feel they are so vulnerable, not being able to let anyone know if they are thirsty or in pain, it’s just the cruellest way to go.

    • Content to a point I’d say. When mum was still verbal she’d cry and say she wanted to die. She cried often. And of course there were the rages that swept over her in waves. This from a lady who had never displayed that before her brain started dying. But there were the happier moments and I absolutely know the loss of inhibition and awareness made some of the more intimate issues more bearable for her.

    • Yes Robyn I think you are right “content to a point” and then only due to the drugs they are given to calm them down and avoid any aggressive behaviour, due to the absolute frustration they must feel having lost control of their mind.

    • My dad sucumbed to dementia quickly and he had to be attmitted to a NH and one day he asked my brother ” Am I in nursing home ?’ and its the saddest day of my life as I was hoping he didnt know xxxxxxxxx

  3. my mother had dementia and after dad died, lived with us for a short time until a fall took her to hospital. after weeks there and ‘sleeping’ so she wouldn’t have to get up and walk, we had to put her in a nursing home. It was more devastating for me as when she arrived and was welcomed by the staff, i asked her if she knew me and she said no. she looked around at the photos i put up of the family and said i don’t know who these people are either. At the hospital that morning she had no trouble recognising me. She actually enjoyed her time at the nursing home in her own room and they did take wonderful care of her and she did enjoy the company of the other women (women only home). If she was grumpy when i arrived, i knew she recognised me and if she was happy and bright, i knew she didn’t. lol she was there for several months before going to the hospital where she died.

  4. What is the difference between a Nursing Home and a Hospital???? My mum is in an aged care facility and she loves it and I am happy she is in there as now she won’t die alone…..

    • Judith I would say the main difference is that a hospital is as you would expect, doctors, one ‘test’ after another,eg bloods, xrays scans, ECG’s etc etc. Noisy and busy places. A nursing home is more like a home and more settling with familiar people and routines. I am sure there are many reasons for needing to be in a hospital, mainly medical so therefore more worrying for patient and family. This is just my opinion.

    • Judith my Dad is on a dementia unit. He has frontal lobe dementia and is steadily declining. He has his own room with his own chair from home and photos of family around him. There is always am RN on duty and EN’s. At home he was constantly agitated and worried about the time. Every evening he would repeatedly ask my mother what was going to happen the next day, where would they be going, what time and how would they get there. He is much more relaxed and happy in the unit, though he still finds things to worry about. We used to take him out frequently but he became so anxious that his doctor advised us not to. I can see my Dad disappearing gradually but he seems content. The care he gets is outstanding and we are free to voice concerns or ask questions whenever we want.

    • So you think a Nursing Home is better than a Hospital for these people at this time of life.

    • Judith, my view of nursing homes is they are just money making enterprises and for the sake of you I’d rather not expand on my experiences with them. I truly hope all goes well for your mum, there are many facilities that are well commended. As for the major differences, the aged care facility will have less nursing staff and not likely to have a resident doctor, it is not a medical facility.

    • All nursing homes I have seen and know have great staff, doctors on call, their own room and their own possessions, reasonable food and some activities and outings….I hear a lot say they wouldn’t send a dog to them but I have not seen a problem with the ones I’ve seen……I am asking the difference between them as isn’t it better to be in them than a hospital.

    • My mum’s has a resident doctor, they have a foot person too, a hair dresser and I could go on. They care about the clients, the food is great and so are the staff, but I am on here asking about nursing homes for those that are dying or have dementia…….because of the article.

    • Hospitals are for acute stays. You are expected to get better and leave. If you linger and you are old, you will be transferred to a nursing home unless you can be cared for by others at home. If you don’t have an ACAT assessment you will be assessed for high or low care.
      Most homes do not have doctors on site but usually the doctors call to see their own patients when necessary. Some homes only call the doctor when you are dead to write up the paperwork. I know this because my MIL was matron at several homes.

    • I can tell you now Judith that if your mum ever becomes incapable of speaking up or suffers from dementia, you or someone will need to visit her very regularly to see she is not being maltreated, these are the vunerable ones and if you were to look up what investigations are happening right now into facilities and staff you would shudder. Not only are they neglected, they are mentally, physically and sexually abused. It will not happen to your mum as long as someone will speak up for her if required.

    • Fred Davies most nursing homes do the right thing. I don’t like the way you are scare mungering. Nursing homes have standards they have to pass and if not these places are closed.
      Some residents come back from hospitals with pressure area’s and catheter bags because staff are to busy to toilet or do pressure care. There are a hell of a lot of aged care workers who do care about their residents. I am one. If you are not happy with that care please take your family home and you care for them .

    • Fred Davies You’ve obviously had a bad experience and I am sorry for that. It must be awful. I totally agree that having someone advocate for you in a home is very important. I will say that mums home (and now dads) is excellent. They care very much for the residents and I’ve observed this over years. But having someone there to pick up the small isssues, to take time with the resident to observe and suggest is so very important. As mum died, my sister and I were with her 24/7 for two weeks. I slept in a chair in her room until she moved to the palliative room, where we had a bed as well as a chair if more stayed. As I was watching her closely, I was able to advise staff on her situation and certainly to do battle for her when the one bad apple was on duty. I’m sorry that your experience has scarred you so much but I do agree with Robyn Johnson, many many places are really good and an excellent choice for end of life care.

    • Judith Forbes Pamela May Moore has explained it perfectly. Personally I’d not be keen for my loved one to go into hospital at the end of life stage. We had that option with mum when she was in her final weeks as it seemed she’d had a mini stroke or something similar. We were offered the option of her going to hospital to find out and we all (including dad) said no, let her stay here in peace. She was in calm and caring surrounds with familiar faces. Her needs were met. She was dying, it was obvious. We had no desire to change her surrounds, which is very very stressful for someone with dementia. Hospital could have done nothing except prolong her distress. In the care home she died, not exactly well, but as well as could be expected without the option of Nembutal.

    • Robyn Johnson, this is not scare mongering, my comments are nased on facts and anyone that places a parent into care needs to be aware with eyes wide open, I have said that there are facilities that are very good but it’s important to be alert if you want your parent to be treated well. I can provide facts to support what I have said and I also have experience first hand so please show me a little respect. If I’m scaring you I’m sorry but please don’t bury your head in the sand.

    • Robyn Green, my experience has not been of a personal one but for persons I know and we have all agreed the only way to see your loved one is cared for is to oversee the facility by frequent attendance, it’s not in anyone’s interest to ignore my words.

    • Fred my head is not in sand I work and have worked in aged care for many years. Our residents become one of our family we care we cry we laugh and we hurt with them. Yes

    • Fred Davies I agree. We looked around for my Mum – picked a nice clean one. Looking back we would have been better finding one that was more shabby but had caring staff. The good thing was that she only lasted 2 weeks there before she died. Only one kind nurse there and they should have called in the doctor but just let her die.

    • Robyn Johnson, my wife has had over 20 years experience and has seen the changes and we also keep in touch with the industry, you can speak well of your experience and that is what we need to hear more of but be assured there are many facilities that are treating the elderly abhorrently and it doesn’t pay to pretend it’s not happening.

    • Jeanette Southam we chose a nursing home for mum based on the staff. We couldn’t be happier . Mum will never be happy without dad and her home but is very well cared for in a loving environment

    • Fred Davies yes it happens… But good places still exist. And we are lucky to live in a country elderly are cared for. Having said that I worked hard to find somewhere the staff were exceptional after seeing my grandmother abused many years ago in a home

    • Judith. We are very fortunate here in Mudgee to have two facilities that are both excellent. Neither has the “feel” of a typical nursing home and both offer a high degree of care. There are no resident doctors but the local GP’s here provide cover at the local hospital and the care facilities. I can’t fault the care that my father gets. I do not know what the situation is elsewhere it may well be more difficult. I know that Fred Davies usually makes sensible comments so a discussion with him may offer you more insight.

    • Judith, a hospital is no place for sick people to recuperate. It’s a busy, noisy place where medical & surgical procedures are done to you and for the acutely ill. Once the acute phase has passed the hospital will be keen to discharge you, either home or to some other facility such as “sub-acute” care, home or nursing home, if for no other reason than the fact that the longer you spend in hospital the more likely you are to have more & more complications, bugs etc.
      My Mum & Dad moved from their retirement village unit into residential care, where Mum died after a number of progressive strokes. Dad said that he knew they would have to do this when he realised that he could not pick Mum up, if she fell – something that had occurred to me as well. He still misses Mum and he has travelled out of town when accompanied but when he gets back the staff & other residents are always happy to see him. He still potters in the communal garden but I can see his world contracting because of his failing sight & hearing. I’m very happy that he has made his enduring power of attorney and other forward decisions and one of those is to refuse all active or “heroic” treatments that would not improve his quality of life. The intention is to preserve his autonomy for as long as possible and to proceed in line with his stated wishes from then on.

    • Barb your situation sounds very like mine except my Mum is still at home and coping well. My Dad is very settled on the home and contented. Mum and I visit regularly but do not take Dad out because he gets very anxious outside the home. Before Dad’s dementia reached the point where he could no longer understand the situation we visited my parents’ solicitor and drew up power of attorney and guardianship documents. We also discussed whether “heroic” treatment should be attempted. Dad was very clear in that issue so my Mum and I can make decisions with the sure knowledge of what Dad wanted,

  5. Sad but true and reading this was painfull, neither my parents were in aged care but my mother in law was and I found it heartbreaking. I hope I’m lucky enough to die with a heart attack rather than have to spend my last years in one of those facilities.

  6. My husband was in a care home for the last three or so years of his life. He was conscious for the last two weeks but prior to that, he was always aware who I and the the rest of the family was .

  7. Jacquie Murray  

    My father passed away 15 months ago and sadly the last 12 months of his life was frightening for both him and me. He was diagnosed with vascular dementia and sadly went downhill very quickly. Phone calls at midnight not knowing where he was, hospitalisation after falls where he had to be specialed cos he kept trying to leave, terrified that the people looking after him were beating him and trying to poison him…it was just terrible. He was such a vital outgoing man and to see him end up that way was just a nightmare. He spoke of ending it but just didn’t have the wherewithal to do it. Had he know 2 years earlier he would have done it without a hesitation.

  8. This could have been me talking about my Dad. I wish he had passed at a similar time but alas, at 89 he can no longer talk or do anything for himself and it is heartbreaking watching someone you have known all your life decline this way.

    • Michelle they say that so I hope he is still happy. He does not smile anymore but he holds my hand ( or lets me hold his) and I rub his back and he looks at me so I can only hope inside he is happy or maybe content. He is in the most wonderful place with fantastic care but it is plain sad given what a sociable person he was. This is a hard subject.

  9. No way will I end up in a nursing home…would rather swallow a bottle of pills.

  10. My mother was much like this and always knew my brother and me. She lived in a nursing home and was well looked after and reasonably happy. We took her for outings and had meals with her. She passed away aged 95 and just slipped away one day.

  11. I don’t want to move to a retirement home but have accepted it will probably be necessary one day and have actually made all the necessary plans with my P of A.. But I’m so selfish and set in my ways (lived on my own for years now), that I suspect I’d be the “patient” from hell.

    I was an unofficial carer for an old gentleman who had been born and spent most of his life in Fiji. We had to eventually move him to a home when it became dangerous for him to live alone in his little flat. He originally hated everything about the home, shouted “what am I doing in this ….ing old people’s home”, etc. After a couple of weeks he announced to the staff that he was glad he was there as his father had built the complex and he was an honorary guest!! Other than that, he spent most of his time back in the Fiji years and told amazing stories that would rival any novel. His only family member in Australia, a niece, came down from Brisbane to see him occasionally and would try and correct him about many details and he’d get very upset – I used to tell her to just let him believe whatever he wanted to, it wasn’t upsetting anybody. I think he was quite happy in his last year as he wandered further and further from reality but it certainly was sad to see this once strong, healthy man deteriorate in front of me. But it’ll happen to all of us, I guess. Me included.

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