dementia

FIGHTING DEMENTIA

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Carolyn Winkler knows more about dementia than most.

Her 96-year-old mother suffers from it. So does her brother. And her ex-husband.

“It’s really hard when you see your loved ones afflicted,” she says. “I have two grandkids, as well. Given the strong genetic component, I do worry.”

Carolyn visits her mother, Lillias, (pictured right with Carolyn and her husband) in her nursing home every day.

“I never know what to expect. Is she going to be happy? Is she going to be sad? Will she remember me?” she reflects.

Two-thirds of dementia sufferers are women; it’s the third leading cause of death in this country. ...

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20 Comments

  • Reply December 7, 2012

    Primmy

    My mother’s slide was gradual, and I didn’t get it right all of the time. I just did not know what to do and when, or who to ask, all the practical stuff. Making the decisions for a willful parent is daunting and possibly the hardest task in the parent/child pantheon. Taking over the reigns from someone who was always the authority figure. Its tough. Very tough. My aunt was different. I could tell something was wrong when she kept lamenting that my mum had died way too young (87) and then couldn’t understand why she hadn’t visited her. She was a bit easier to look after, except when it came to placing her in a high care nursing home. THERE ARE NOT ENOUGH FACILITIES. Simple as that. It took six months to find a place within a reasonable distance of me. And what do I do when I think of my future? I eye the task of getting enough sleeping pills organised, and I drink lots and lots of water. Rehydrating the brain. Lots.

  • Reply December 7, 2012

    Sarah Tolmie

    I strongly recommend everyone read the book Brain Longevity – The Breakthrough Medical Programme that Regenerates your Mental Energy, Memory and Learning Abilities, by Dr Dharma Singh Khalsa. It provides a very doable, practical, clinical and holistic model for brain optimisation, prevention of age related memory impairment/ dementia and alzheimers and even repair and reversal of advanced brain decline. Any doctor who tells you it is hopeless and your are at the mercy of genetics or it is a natural part of aging should rethink and read this too! It covers diet, nutrients/supplements, mind/body exercises and pharmacology/tonics. The single brain killer is STRESS! Which causes lack of oxygen and poor nutrition to the brain through bad diet, poor nutrition, smoking/drinking, no exercise and chronic stress response (shot adrenals and cortisol overload) that KILLS BRAIN CELLS.
    Sarah

  • Reply December 7, 2012

    Kylie L

    I have worked as a neuropsychologist specialising in the early detection and differential diagnosis of dementia for almost 20 years now. In that time community awareness of the disease has grown, but I am still asked “What’s the difference between Alzheimer’s and dementia?” by every second client or family (Alzheimer’s is a form of dementia, the most common one, but there are many others), and no new drugs have been approved for treatment of the condition in Australia for the past decade. Those we do have are totally ineffective for around 40% of cases, and only rarely really useful for the rest. The (public hospital) dementia clinic I work at has a 9 month waiting list, even though the best way to maximise the results of the drugs we do have is to start them early. There is still a LONG way to go. When I started my career in my mid-20s I reassured myself that by the time I was heading towards the age bracket where the risk of dementia jumps up there would be far better treatments and facilities available. Now in my mid-40s, I’m getting nervous… and professionally we’ve only just started seeing the crest of the baby-boomer “grey tsunami” racing towards us. More funding is definitely needed, and quickly.

  • Reply December 7, 2012

    Linda Robinson

    we need to harass ALL governments- there are not enough facilities OR staff to look after these people properly.!

  • Reply December 7, 2012

    sue Bell

    and what do you do when your mother, who nursed her husband through nearly 18 years of alzheimer’s, has begged you to help her die, and I mean really begged, when her brain starts to go. That time is now and I am seeing a rapid decline in a once very fine brain and I am seeing her fear of that decline both mentally and physically.

    • Reply December 7, 2012

      Jason

      Sue Bell’s post reminds me that neither my wife nor I want to put the other through years of struggle if one of us gets Alzheimer’s. The endpoint is inevitable, the decline is degrading for the person and heartbreaking for their carers.

      I am not going to let politicians like Kevin Andrews and his likeminded ilk say whether I am able to choose when enough is enough. His religion is not mine, and it is infuriating to me that were I terminally ill, there are people who would try keep me from ending my life to save what they imagine to be my soul, in spite of my own beliefs and my natural right to determine what I do with my body.

  • Reply December 7, 2012

    Tracey

    Oh Sue, that is heartbreaking. It’s terrifying to think of the number of people who will be diagnosed in the coming decades – and the lack of facilities, support, or, indeed, understanding of the illness. x

  • Reply December 7, 2012

    mudhouse jane

    My dear Mum passed away in October. She had a long battle with cancer, but it was vascular dementia, accelerated by whole brain radiotherapy, that hastened her death. Over the longer term, I am sure stress was also a significant contributor.

    We were extremely lucky to eventually get Mum into a great nursing home, after a couple of months of respite care: it couldn’t have been better, under the circumstances. The nurses were very experienced, patient and compassionate. Quite a few even came to Mum’s funeral, and she had only been there for a couple of months.

    In the end, Mum could no longer walk or care for herself. Her long term memory was still excellent, but on most days she couldn’t remember what she had eaten for lunch. She mixed up night and day. And in her last week, she described to one of her angelic nurses how she had just dressed me and sent me off for my first day at school.

    Dementia is awful. Mum loathed losing her independence, and in the end, she had had enough. The nurses described it as “dropping her bundle” – she wanted to go. And she did.

    From an aged care funding perspective, we, like many other countries, are on a knife’s edge: it is no secret that we have a huge bulge in the population 50+ – and that impact is now starting to be felt. I don’t know what the answer is.

  • Reply December 7, 2012

    Kathleen

    I read Kylie L’s response above with interest. My dad has been diagnosed with Alzheimer’s only 3 months ago. Then, he lived completely independently with my mum: within 2 months he was in a high-care dementia- secure (ie locked) nursing home. He has had until now a ferocious intellect: he has several degrees at masters degrees & never stopped until now stimulating his mind with learning & education. His decline has been frighteningly quick & devestating. My mum is devestated, broken-hearted. However, I suspect if we all lived long enough, we would all get dementia, be it Alzheimer’s or another type. I know that goes against current thinking but I am pessimistic regarding talk of a cure. Certainly we are a long way from that. Personally, I feel we need to concentrate more on how to make lives of dementia-sufferers better.

  • Reply December 7, 2012

    nean

    I watched my grandmother die of Alzheimers15 years early, her memory died of me…her death finally a relief now my Uncle has it my aunt rang saying Nean only you can get him in a home new years eve I am a disabled female ADF Vet my Uncle a WW2 Army New Guinea Vet…my Advocate and Welfare officer said you have to be kidding full time care new years eve we rang – by 2.30 we had him in full time care…a miracle…my dad a 37 year Career RAAF Veteran…is now in early stages of dementia I care for him and mum both have cancer…I am barely coping…but have put into place HAAC, Blue Nursing, Old Age care and visits…for my own health I am moving away and will stay weekends. When a 37 year old vet brings in a piece of ammunition and has no idea what it is…and he has been cleaning up after ww2 in Darwin…firing on rangers i rang my son a solider, he got his mates at work and said mum hold it up to your lap top – I could not remember my self the disarmed marking after an hour the lads at Holsworthy said its safe but hide it…some days I have this boy of 14 telling me how he met Mrs Roosevelt in Townsville other times I am swiping his card saying dad pin and ok…I am worn out..I am trying to get him a gold card like I have…but govt and Dod make it hard…one day he will say who are you (I am adopted) I will say just your carer its ok…now have had your meds, showered? its ok I am here to look after you…both my parents have cancer…my brother lives 20 minutes away – best thing about being adopted I am not related to their lousy son.

  • Reply December 7, 2012

    ro.watson

    I have an old neighbour, in her nineties, who nursed her husband, with dementia, at home, for more than a decade. One day he woke up beside his wife and said “who are you?” He had been a Minister in a state government,and a local football hero, a husband and father. I find something kind of sweet and human about the way our memories are told~and collapse, even as I get the terrible loss involved in the people who must witness a change in the people they have loved.

  • Reply December 7, 2012

    sue Bell

    One of the things we learnt about Alzheimer’s is, if you look at fine art everyday it holds off the ravages for a long time. My father was an artist and drew till his last weeks. He always had art books to look at and art prints around his bed. The most effective painting of all has proved to be Rousseau’s “The Sleeping Gypsy”. My father has always had one or two copies of this print all my life. I had it as a screen saver for years and even did a cartoon of it with Ned Kelly and a dingo instead of the gypsy and the lion.
    We need to learn more about art and it’s effects on the brain as we need to do with music. I cannot imagine a second of my day without music in my head.
    And Jason all my family and I think like you. This is my body and mind and no one has the right to impose their religious views on how I live or chose to die.
    In the nursing home my mother had to move into this year (14 falls, numerous broken bones) a number of residents have taken their lives this year. It is a cruelty that we force them to do it alone and in secret because other people want control over our lives.
    I have seen some wonderful care of dementia patients from Veterans Affairs and community groups. There are good people out there and I thank them for their patience and care of not only the patient but also of their carers.

  • Reply December 7, 2012

    sue Bell

    One of the things we learnt about Alzheimer’s is, if you look at fine art everyday it holds off the ravages for a long time. My father was an artist and drew till his last weeks. He always had art books to look at and art prints around his bed. The most effective painting of all has proved to be Rousseau’s “The Sleeping Gypsy”. My father has always had one or two copies of this print all my life. I had it as a screen saver for years and even did a cartoon of it with Ned Kelly and a dingo instead of the gypsy and the lion.
    We need to learn more about art and it’s effects on the brain as we need to do with music. I cannot imagine a second of my day without music in my head.
    And Jason all my family and I think like you. This is my body and mind and no one has the right to impose their religious views on how I live or chose to die.
    In the nursing home my mother had to move into this year (14 falls, numerous broken bones) a number of residents have taken their lives this year. It is a cruelty that we force them to do it alone and in secret because other people want control over our lives.
    I have seen some wonderful care of dementia patients from Veterans Affairs and community groups. There are good people out there and I thank them for their patience and care of not only the patient but also of their carers.
    A SERIOUS WARNING many elderly patients have been given CELEBREX for osteoporosis. This can have a rare and horrible effect on some patients with no knowing if or when it will happen. Celebrex sometimes stops the healing of bone in the jaw. So if an elderly person has been on celebrex and they have a tooth removed they can end up with a cavity that never heals. The gum does not grow over the hole and the bone just slowly rots away. If anyone has been on celebrex look after your teeth.

  • Reply December 7, 2012

    ro.watson

    Thanks Sue Bell. Yip, a big picture.

  • Reply December 7, 2012

    ro.watson

    Oh Nean. Big stuff. I hope you have people around you who can share love and strength with you, and even, if not, I hope you can find these in yourself.

  • Reply December 7, 2012

    Helen King

    My mother in law was ‘diagnosed’ with early onset Alzheimer’s in 1989, at 50 years of age (officially couldn’t confirm it until brain autopsy, which they did). The family was advised that generally early onset is more aggressive and therefore quicker, but not the case for Flicky. When I met her in 1995, she was at a very uncertain stage in terms of awareness/conversational abilities/ tasks, etc and couldn’t be left on her own. However she hung on for a further 16 years, finally passing away at 73 years of age last year (23 years in all). For most of that time, the family (her husband and sons and duaghters in law, including my husband and I – her daughters were both overseas but frequent visitors – cared for her at home, but eventually it got too much for them (incontinence, inability to do anything for herself, wandering, etc – fortunately maintained a beautiful, pliable nature). Her daughters in particular have in the back their minds the likelihood they too will develop the illness – Kylie would know more about this, but apparently there is a stronger chance of inheriting this if you are female. They have been very consciously eating healthily, exercising, living life as fully as possible, and taking up lots of ‘brain’ hobbies – crafts, sudoku, etc, to keep the brain active with different types of activities -not just work, etc. The wonderful thing was how forward thinking and unselfish Flicky was when she was still able – notes to the family re. What to do when her deterioration was such that she needed support to live (don’t), her letters to her husband freeing him to repartner (she didn’t want him to feel guilty), etc. The sad thing was that her husband, who had met a lovely woman and formed a relationship once he had said goodbye to Flicky once she was so far gone that she really wasn’t Flicky, died 8 months earlier – the wrong way around, and not what Flicky would have wanted. Message is – enjoy life, as you don’t know when it might change, and think and prepare for others – we’ve learnt so much from my lovely mother in law.

  • Reply December 8, 2012

    MADCOW4

    my mum has alzheimers she is eighty six but it started about 8 years ago, such a outgoing retired lady who enjoy organizing day trips and lived in a retirement village as my father had pasted away many year before her. i moved to country nsw and started a new life and got married but even though mum was at my wedding and it was something she had hoped for me to meet the man of my dreams i could not share my day or the preperation with her it was just so sad. i miss her so much i am now 53 and i get to sydney when i can to vist but sometimes she want even open her eyes she doesnt say anything or even recognize us. thank god for my amzaing sister in law who visits her every couple of weeks. but her sister who was 10 years older than mum had alziemers she was in the same nursing home and before that retirement village they had a ball thelma and louise happy hour, trips just enjoying themselves but it was cut short with louise first and then mum. mum had said to me when auntie lou got alziemers that if she ever got it she would take pills. but that did not happen. i really believe that it should be each persons right to say enough is enough i do not want to be around it this happens to me and have affairs in place so that they do not have to live out the rest of their lives in a bed like a vegetable. i know my mother did not want her life to be like this and i do not want her to live like this . she has missed out on so much and alzheimers i hat you for what you have done to my family. my mother has no health issues no problems with her heart or her body except you alzheimers why did you take my mum away

  • Reply December 8, 2012

    cece j

    My 71 year old Mum has Alzheimer’s. My Granny also had it. Having a 4 year-old and 6 year-old I take myself to the same mind space as I do with my children. Patience! Low expectations also helps – so if she’s good, great, if not – I wasn’t expecting more, so don’t have too much distress. It’s still frustrating and agrivating at times – but approaching the situation with an open heart helps me. She is about 1/2 way through her journey though so can still go out etc. Some days I do have to excuse her behaviour and that is embarrassing but nothing more. I saw a man today that was at late stages and I do get worried how I will cope with Mum then but hope that it is like child rearing – yes there are the worries but the stage before has prepared you to a certain extent. As far as me preventing it for myself (?) – no stress, healthy (ish) diet, exercise etc etc & the philosophy that we will all die of something so why not Alzheimer’s. Let’s hope that there is some genius finishing off school now that will develop the magic cure or prevention (sadly too late for Mum though).

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