Category Archives: Tales of Dementia

An Incredible Movie ~ A FRAGILE STORM

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A Fragile Storm

My sincere thanks to all involved with making this movie and to the actors for brilliant and sensitive portrayals of the characters. 

My niece has shared this movie and it is possibly the most disturbing movie I have seen in a long time.  It runs for approx 9 minutes and speaks to the anguish of a relationship interrupted by Dementia. That demon in the cupboard. The elephant in the room.  The movie is confronting and informative. One of the executive producers has Alzheimers. It will upset viewers and others will understand it totally.

I was in tears from the first seconds.

I have put a warning that the movie is controversial and it will question your understanding of dementia based illnesses.

Regular readers of my blog know that my father died two years ago this month as a result of having Lewy Body Dementia and my mother has Dementia Nos associated with COPD and Emphysema and is in a care facility.  My niece is attempting to raise two children as a single mum, and care for her mother now diagnosed with Alzheimers.

What is the one thing our loved ones ask of us in the early stages of these dementia based illnesses?  Almost universally it is –  “Please do not put me in a “home”.  My thoughts on my niece’s comments about making promises and guilt at not being able to keep them.

These are my thoughts drawn from my own experiences as a caregiver on my niece’s comments about making promises and guilt at not being able to keep them.

We all make the promises with the best intent and then when we are unable to keep them due to circumstances outside of our control we do feel guilt. These dementia based diseases are all about guilt.

We are never ready for the changes and often do not see them as they are subtle and can fluctuate from hour to hour day to day. That is one of the things that is emotionally exhausting about dealing with these issues.

We second guess ourselves all the time;

“What could I have done better or differently?

Why did I lose my temper? I should know better? Intellectually I understand but my heart does not. Why? Why has this happened? Why/ how did I not recognise the signs earlier?  Why isn’t there more help/research/understanding/funding? Why does this push the boundaries of my beliefs system? Why am I not more patient? Why are there days when I hate everyone including myself? ”

The best and most important thing for caregivers is to understand they are not responsible for the illness or the situation and to find time out and recharge.

Acceptance of the situation and finding tools and support systems to help is vital. It won’t change the progress of the disease but it may help you cope with those changes more effectively.

Recognise that as time progresses we may have to hand over the care of our loved ones to others. For health, mental and physical, safety and financial reasons. Heather would understand that better than anyone else. This movie shows the extremes and those extremes do happen – not with all but with many cases. These diseases have an impact not only on the person with the disease but their families and support systems and no one understands another’s journey. We may empathise but we do not understand the daily pressures. Build memories while you can, record conversations in writing and on tape or video and make scrapbooks these help as anchors in the darkest hours.

Take it one day at a time and always ensure you find space for yourself and activate your support systems when you need them.

When someone says what can I do to help suggest a couple of meals that can be frozen. Help with household and garden chores and come and visit or phone and talk. Do this because people with all good intent will make offers and then find the situation too confronting.

This is a club no one asked or wanted to become a member of – but here we are. Make beautiful memories and treasure them.

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In losing our memories, do we lose what makes us human?

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This quote was shared today;

 There is one thing that Alzheimer’s cannot take away, and that is love. Love is not a memory it is a feeling that resides in your heart and your soul.

How I wish that this were true… How can someone love when they have no memory of their loved ones? For some, when the person with dementia (PWD) denies they have had a partner or a child – there is no one to be loved, that is the reality of their world.

We are the sum of our experiences. Memory is what makes us who we are, it governs how we react in certain circumstances.  Memories are not only singular there are shared community memories. Memories provide us with a common meeting point, learned behaviours and  understanding of the world we live in

While many with dementia are living meaningful lives we need to admit that in the final stages that these things happen. 

We must face the reality of what happens in order to process and deal with it. 

The PWD many be motoring along fine in their own world, and we should be grateful for that. But for those who love and have supported the PWD  we are already  mourning their loss, this is recognised and called ambiguous grieving.

http://www.whatsyourgrief.com/ambiguous-grief-grieving-someone-who-is-still-alive/

We will always love the PWD and remember for them, but it is a lonely walk.

Dementia will not rob me of my love for the one I love, but it may rob them of their love for me.

Living with Dementia

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Living with and talking about dementia. I agree that we need to talk about the problems associated with dementia and living with dementia for support persons and people with dementia. We need to discuss them in order to educate and inform. We also need to be sensitive to others circumstances. I have worked long and hard (and to continue to do so)to provide information and support for people living with dementia especially LBD. However, when my father died after a long battle with this disease,the last thing I would have wanted when I was out in a social situation was to hear someone discussing persons with dementia. The wound was too raw at that point. I also recognise that there have been times where in my desire to spread the word I have overstepped the mark. This occurred simply because I did not consider the feelings of others, I did not practice compassion. To override the sensibilities of others is not a good tactic – we cannot know how another person is feeling, what they have experienced.

Additionally, I saw a poster online, one used at an information session that talked about “phasing out all institutionalised care”. I have not seen the presentation and as such, I have not had the poster defined within the context of the speaker’s notes; I have seen it only as a stand-alone comment on Facebook. As have many others. What exactly does this statement mean?

Is this a discussion about community care v’s institutionalised care?
“Community care is about how the community looks after its members. What skills and resources does a community have?
Community care is …
Informal, where there are no rigid guidelines or principles that define the service. Is not bound by government policy or practice.
Spontaneous, where the service is temporary in fulfilling a specific need at a particular time and in a particular setting.
Relies on community members to provide the service.
About the members supporting each other.
A value in being a part of the community.
Having something to contribute to the community.
The amount of support provided is directly related to the existing skills and resources of the community.
Where a person has no existing communities (living, recreational, education or employment), that person will be disadvantaged in not being able to fulfill his/her needs.
Where is the line drawn between community care and institutional care?:
I feel that community care is about ordinary community members getting together as a group to provide for the needs of others in their community.

Institutional care is more organised around a specialised service that provides specalised skills and resources that are not available in the wider community, to a group, whose needs can not be fulfilled within the wider community.
When providing the most appropriate care for people with high support needs …
1) The community is not where the person is living, but where the person participates, shares experiences and has valued relationships with others.
2) People with high support needs will always need support structures as a part of their lives.
3) The amount of participation in a community (living, education, employment or recreation) is directly related to the skills and resources of the person, and, the skills and resources of the community that the person wishes to participate in.
4) Institutions are going to be around in one form or another whether we like it or not, It is the way that they are used that is the problem.
5) The institutions of a society towards a particular group determine the way the group participates in society.
6) The institutions of a particular government department, organisation, profession or service define the way the person is supported within that society.
7) Facilities that support people with high support needs do not need to be the nursing homes or prisons but can become warm inviting community places that offer a range of services to the community, as well as be a part of the wider community within that society.
8) People with high support needs are a minority group in our society, and will have the same problems as other minority groups in being a part of society.”

There will always be situations where PWD cannot be cared for at home. The care support person may be ill, old, cannot cope, or have no additional support, or be the person providing financial support. The person with dementia may be unable to undertake their day to day living tasks without assistance or supervision. They may require lifting, turning. They may be violent at times. It may be difficult to keep that person safe, even after turning your home into a fortress. They sometimes show paranoid behaviour and suffer from delusions.

PLEASE do not make people who make the decision to place their loved ones in supported accommodation, including lockdown units, feel shame or guilt over this action. Sometimes there is no other recourse.
While I applaud the actions those who continue to strive to make the world a better place for those living with dementia, do not forget the family and loved ones who are also impacted. We need more resources, more funding for research, early diagnosis, better medication regimes, better training and understanding by medical staff, none of this is in dispute.

We also need to recognise this is a disease with over 280 complex variants. A disease, which in its final stages sometimes cannot be managed without medical intervention and often placement in a facility.

There will always be those who walk away from one who has a terminal illness, because they are weak, or can not face their own mortality, or because they cannot forgive how that person has treated them throughout their lifetime. However, the majority of care support persons, put their lives on hold, suffer financial, personal, emotional and physical hardships in caring for a loved one.

There is a saying when dealing with this illness, “you meet one person with dementia, you have met one person with dementia, no two cases will follow the same path.”

There is no easy answer, no one size fits all in this equation.

WHY WE NEED TO TAKE CONTROL OF THE DYING PROCESS

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Recently I saw a photo of a gentle man with Lewy Body Dementia.  He was in final stages, in a hospital bed in a hospital shared room.  I won’t use the photo out of respect but I will try to describe the scene to you.

The photo shows an elderly man in his mid-80s.  He is ravaged by the disease and his body shows muscle wasting.  He is very frail physically.  He is unconscious and in final stages of LBD.

This gentle man is hooked up to a number of medical apparatus.  He has an IV to deliver fluids and medication. He is being monitored for heart rate, temp and blood pressure and blood gasses. He has a urinary catheter in place, a nasogastric tube for feeding and his neck is encased in a brace to allow for the ventilator, to assist his breathing and for suctioning to remove any phlegm or assist if he should aspirate.

The decision was made to remove the ventilator and less than 12 hours later this gentle man had passed away.   He passed away still hooked up to all the monitoring equipment and the neck brace under the glare of bright hospital lights.

My question is why?

This man was also suffering from an incurable and terminal disease, Lewy Body Dementia.  He was in his 80s.  Why was all this high tech equipment put in place?  For what purpose?  The precept of medicine is First Do No Harm, not  to extend life at any cost, simply because we can.

The alternative – in a home care / care facility or palliative care /hospice situation.

In the bed lies an elderly man in his 80s. He is physically frail. He is in the final stages of Lewy Body Disease.  His body shows signs of muscle wasting and the other symptoms of LBD.  This is a terminal disease. He is unconscious but is resting quietly.

The room is a single bedroom, the curtains are drawn to control the light, there is soft lighting, unobtrusive background music, the temperature of the room allows for a light blanket but not freezing air-conditioning.  There are no monitoring devices, a sub-cutaneous morphine pump is in place for regulated pain relief.  No nasogastric tubes, no bright lights and noise, no neck braces and ventilators, no catheters as urinary out-put is minimal.

At 8.00am  the care staff care staff repositioned him, this is done regularly and the pump is checked. He appeared to be resting comfortably on his side, well supported by pillows.  He passed away quietly.

This man passed with as much comfort and dignity and peace as  could be provided. He was  not hooked up to beeping machines and flat on his back which would have added to his discomfort and pain levels.

Which scenario would you prefer for yourself or your loved one?

Make your wishes known and do not allow those who should know better to persuade you that a hospital with all the interventions they offer is the best option. In the case of long-term terminal disease, hospital is not always the answer.

DYING AT HOME

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DYING AT HOME

http://www.abc.net.au/news/2015-10-21/health-system-needs-overhaul-to-allow-people-to-die-at-home3a-/6874074

This is an interesting and pertinent article. However, I question the response of the lead author, Associate Professor Debbie Horsfall, who states that 80 per cent of Australians would prefer to die at home in familiar surroundings and in the presence of family, but only 20 percent of people are able to do so.
To make a fully informed response, it would be necessary to know the complete demographic of Assoc. Prof. Horsefalls subject base.

There are many issues to be addressed. People may prefer to die at home but is this possible? Deaths related to neurological disorders, the many differing types of dementias is now the 2nd highest cause of death in Australia (ABS MARCH 21 2015). Our lifestyle no longer supports the extended family situation as in past generations. People are required to work longer to ensure an adequate retirement. How do caregivers manage with minimal support and illnesses that requires caregiving over an extended period of time? Many 50 to 60-year-olds, primary caregivers are female. They give up careers and their lives to care for elderly and infirm parents. It is not uncommon to be caring for both parents. The  physical and emotional strain is intense. Family doctors and social workers are aware of caregiver stress and burnout. Adult children are assuming the burden of managing their parent’s finances as well. Relationships are often a casualty along the way. Individuals may relocate to assist parents who have moved away to a ‘retirement area’. This in itself may cause issues when the individual’s support network is no longer available and children and grandchildren are no longer close.

There are so many factors to be considered when talking about dying at home. There is so little affordable assistance actually provided to assist in keeping a long term terminally ill person in their own home. Help during the day is available and wonderful, as is respite care if the person is accepting of this. The lack of assistance from dusk till dawn has an enormous impact on a 24x7x365 caregiver. Lack of sleep and disturbed sleep leads to illness, guilt and incapacity of the caregiver.

I have strayed somewhat from Prof Horsefalls statement, but it is not a cut and dried situation. Who cares for people in their own home? Who supports the caregivers? How is it funded? The current government funding is worse than inadequate it is almost useless. How does caregiving for extended periods of time impact on the emotional, physical and fiscal well-being of the caregiver? How does it impact marital relationships and relationships with the caregivers own family? When you are caregiving you are isolated and forgotten friends melt away and support systems become non-existent. It would be wonderful if we could all die peacefully in our own home surrounded by loving family members. For many that is simply unachievable due to cost factors and family constructs. And for some the toll of dealing with the illness over long extended periods is simply too overwhelming.

FATHER’S DAY

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FATHER’S DAY

I woke this morning from a beautiful dream

You were standing beside me proud and tall

Tears were glistening in your eyes

You lifted the veil from my face  and said;

“if you are not sure or want to walk away  I will walk with you ”

I smiled and squeezed your hand  and said “Come on Dad lets go,

Today is the first day of the rest of my life”

You kissed  me replaced the veil and holding tightly to my hand

You walked me down the aisle to give me away to the young man patiently waiting.

You were always there when I needed you

Your love was unconditional

I am who am I am because of you

And the trust you placed in me allowing me to grow.

Flash forward forty-seven years

I hold your hand I wipe your tears

I love you more deeply than ever before

But I can’t walk this journey with you

I can hold you and comfort you

I sing the songs we loved

But your grip on my hand lessens

Your chest fails to rise

There is no breath

No more heart- beat

I cannot lift the veil of  death that has claimed you

The clocks have stopped

My first love my dearest Dad

I love you

Happy Fathers Day

Lin.

WHEN LIFE HANDS YOU LEMONS

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LEMONDADE

a friend of mine reminded me that I had written this piece some time ago. Thank you,  you know who are.

Writing Challenge 3 prompts challenge:

Lemons
Keys
Hair Ties

When life hands you lemons,  make lemonade,” that’s what my Gran always says.

But then these days she says some crazy things. The other day she told me that the car wouldn’t start without hair ties.  What she really meant was it wouldn’t start without the keys.

She does crazy things too, like she puts the keys and her hair ties in the freezer.  Why would you do that?

My Gran has lovely hair, it’s that beautiful white grey, not yucky dull grey.  Her hair is long and she wears it in a plait that hangs down her back.

My Gran likes to wear tied dyed pants and boho tops and leather sandals.  Mum says she is a Hippy  who  hasn’t grown up.  My Mum is very practical.

Mum gets angry at her sometimes because she tells the same stories over and over again.     My Gran loves to tell me stories of when she was growing up, and how she marched down the streets of Melbourne to protest against the Vietnam War.

She talks to me about a coffee shop in Carlton called, The Bread Stick where she used to have lunch every day when she worked at the University.

The pottery shop next door called Portobello Road, where she purchased things for her glory box on lay-by. Then she explained to me what those words meant.

She talks about typewriters and record players. She has an iPod now.   My Gran was smart and funny and laughed a lot.

Now she is sad, and cries and says she feels lost.

My Gran had her beautiful hair cut today because she isn’t well enough to keep it looked after, so Mum took her to get it cut.

My Gran is sick she has a brain illness. Some people call it dementia.  That’s why we sometimes find the keys, the hair ribbons and the lemons in the freezer.

I love my Gran, she isn’t crazy, she is sick.

I asked Gran how she feels and she smiled a sad smile and said, “When life hands you lemons, you make lemonade. What else can you do?”  

 

I SPEAK FOR MY FATHER ~ A DAUGHTER’S JOURNEY

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I SPEAK FOR MY FATHER

Part 1:  The Beginning

Ayn Rand states that altruism should never be confused with goodness, kindness, to others or respect for others and that the absolute of altruism is self-sacrifice.

This is the truth every caregiver knows. Dementia is a word that evokes fear, and sends us scurrying away from a fate we do not wish to acknowledge. We conjure visions of dribbling, incontinent, blank face beings who have been robbed of their basic independence.

What is dementia? There are over 283 identified neurological diseases of which dementia is a component.  The World Health Organisation defines dementia as;

‘..a syndrome—usually of a chronic or progressive nature —in which  there is deterioration  of cognitive function (i.e. the ability to process thought) beyond what might be expected for normal aging. It affects memory, thinking, orientation, comprehension, calculation, learning, capacity, language and judgement.

It is a terminal disease, there is no vaccine, no cure and somewhere in the world every four seconds someone is diagnosed with a dementia based illness.

Sacks speaks reverently of the premise that ‘…we must deepen the case history to a narrative or a tale…the patient’s essential being is very relevant.’ Unfortunately, the majority of medical practitioners do not appear to have a clear grasp of this concept.  This was particularly evident at the first meeting with my father and his treating General Practitioner of 25 years. We were summarily dismissed with a display of patriarchal indifference, and a patronising pat on the head. The advice — this was to be expected as one ages. Wrong. Dementia based diseases are not solely a disease of the elderly. There are recorded cases as young as two years of age, for example, associated with Batten’s Disease.

Dr Alzheimer’s first patient was only 51 and patients with Lewy Body Disease have been diagnosed in their 40’s.

As medical science has evolved and diagnostic techniques are refined, patients in their 20’s and 30’s are now being diagnosed with varying forms of Young Onset Dementia.

We were offered no counselling or referrals, no home help or meals on wheels; nothing to make life easier, no physiotherapy or ongoing assessments. My father was having hallucinations, these were dismissed and the advice by Doctor X was to ‘get his hearing aids checked,’ no advice was provided when or if my father should continue to drive or cease driving.

We went home and waited, we morphed from one set of symptoms to another. The disease was not static, sometimes ramping up its progress and at other times my father appeared completely normal and this could all happen within the space of a few hours. Life was chaotic and the disease wreaked havoc with our day to day existence.  Doctor X remained immovable in his conviction, that nothing could ameliorate my father’s condition.

Unsure of what to do next, I did what most people do today when faced with an insurmountable problem, I turned to Google and then to social media. I researched, compiling more information, reading medical journal abstracts with the aid of a dictionary, to assist my understanding of the technical jargon. Eventually, I arrived at a point where I was convinced my father was suffering from a neurological disorder known as Lewy Body Dementia or Diffuse Lewy Body.

Armed with a folder of documentation, a liberal helping of determination, a diary of behaviours, and drawing on my experiences in nursing, I made an appointment to see Doctor X.  I imagined a kinship with Don Quixote. I knew I was embarking on a voyage that would take a tilt at the establishment, a prestigious, authoritarian, and elitist windmill.

The appointment did not go well. Doctor X was unwilling to discuss or listen to my theories. In his words I was, ‘an overprotective, neurotic, female, not trained to diagnose disease, and unwilling to accept the onset of the natural aging pattern.’

Doctor X’s behaviour is reflected in Oliver Sack’s work when he speaks of the analogy between science and disease;

‘…therefore serve as a warning, and a parable — of what happens to a science  which eschews the judgemental, the particular, the personal and becomes entirely abstract and computational.

Angry and disappointed, we found another Doctor. Following an appointment with my own Doctor and we had an urgent referral for my father to local geriatrician with an excellent reputation.

Part 2:  Knowing the Disease — what is Lewy Body Disease?

It is the most difficult to diagnose and the second most common of the dementia based neurological illnesses.  First diagnosed by Dr Lewy in 1912,  ‘it was not consistently recognized until 1996, and not listed in the International Classification of Diseases until 2005.’

3 Core Features

  1. Fluctuations in cognitive behaviour. Awareness and concentration will fluctuate widely and without warning. The individual can progress from hypo-alertness to a state of confusion, drowsiness or non-responsiveness. Attention spans will also fluctuate. These periods can last from a period of a few seconds to days.
  2. Slow physical movement, muscle rigidity, myoclonic spasm, tremor and ‘wooden’ face, shuffling and the ‘Lewy lean’.
  3. Hallucinations are a primary indicator and encompass the sensory spectrum they may be tactile, auditory, olfactory, and visual and include taste.

 

Signs of Lewy Body Dementia

  • It is common for Lewy Body patients to experience depression as an understanding of self is maintained.
  • Apathy. Executive functioning making decisions becomes too difficult. There is an increased lack of ability to deal with daily living tasks. Dressing, answering the phone, paying bills, communicating verbally with family. Repeated falls and fainting. (postural hypertension and syncope)
  • Physical movement becomes more difficult and slow, shuffling walk, stiff limbs, or tremors.
  • REM sleep disturbances, including insomnia and acting out dreams—movement, vocalisation and hallucinations, restless leg syndrome. Paranoia and Capgras Syndrome may also be experienced.
  • Fluctuations in autonomic processes. This includes blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing,(dysphagia).

Not all Lewy Body patients will present with all of these symptoms at the same time. However, all Lewy Body patients will experience these symptoms throughout the progress of the disease.  From diagnosis the projected life span is five to seven years. The disease progresses differently for each individual.

Dementia based illnesses are not a natural part of the aging process and there is more to dementia than Alzheimer’s.

Part 3:  Living with Lewy Body Disease – Dad and Me

Our journey was over a six-year period.  In retrospect, the disease had been obvious for at least five years prior to diagnosis.  My feelings toward ‘Lewy’ fluctuate as widely as the disease itself.  It drove us to the edge, it threatened relationships, caused physical and financial hardship and taught us that life is not fair. I am grateful to ‘Lewy’ because it allowed me to get to know a wonderful, intelligent and reserved man in a very special way. I became his voice, his advocate, his protector. I was closer than a lover, we had an intimate connection that even death cannot break.

From my diaries:

  • There were nights when I would sit rocking him in my arms, listening to the surf pounding the beach, he would be listening to the surf in a different time and place, hiding from the Japanese snippers on a mud-ball island in the Coral Sea.
  • There were days when he would make a cup of coffee at 10.00am and be like my Dad, and then at 10:30am he could not work out how to drink from a cup.
  • The fun times came when we had to shoo the chooks and ducks out of the bedroom because they were keeping him awake.
  • The bad times were when he thought I was someone sent to kill him and he would strike out to protect himself.
  • The devastatingly sad days when he, with gentleness would introduce himself and ask my name, and say, ‘That’s a lovely name, that’s my daughter’s name’ or ‘who is that lady? I wish she would go. Pat won’t like it if she comes home and finds another woman here.’ That woman was his wife of 68 years.
  • I loved him, fought medical personnel, fed him, washed him, dressed him, and made sure he had his medication.
  • At times we argued as we tried to exist in his world as he could not exist in ours.
  • Home-help and meals on wheels and the hospital bed, the shower adaptions, ramps wheelchairs, all these things turned the house into a de-facto hospital.
  • I was with him day and night when he was in hospital, because the staff had no knowledge of how to deal with his disease.
  • My Mother withdrew, she could not cope with the changes and understand how he could change in the blink of an eye, while always knowing who he was.

When he died part of me died with him. Ayn Rand was correct, altruism is the destruction of self for another. Any caregiver will tell you, it is part of the caregiving experience.