Awareness, Action, Fundraising, Cure

Medication v Emotional Support for People with Advanced Alzheimer’s

17/3/2017

What would you do?

I often question how Registered Nurses, Clinical Co-ordinators and particularly Doctors (who may only see the person for 10 minutes once a month), make informed decisions on medications for people with advanced Alzheimer’s, particularly when they cannot communicate with the person and often for whatever reason, do not or cannot consult with primary family carers.

I’m talking about people like my mum who cannot speak for themselves, who cannot express their pain or discomfort in words, and do so only with body language. Is this body language observed or ‘listened’ to?

I fear not. My biggest fear and concern is that (in my opinion), additional medication is prescribed when not necessarily needed. Of course there are times when the person is very much in pain and needs additional pain relief, but this CANNOT always hold true.

Quite often the person needs emotional support. They need a companion. The essence of the person is still there and is reaching out, communicating with the limited resources available to them. Such support does not take a lot of time and I believe this is one critical and vitally essential element that is often missing in care.

How long would it take for one nurse to do a quick head to toe check BEFORE calling the RN for extra medication?
Is the person comfortably positioned?
Are they hot? Are they cold?
Could they be thirsty or hungry?
Is there surrounding noise that could be causing distress?

Surely this does not take too long and many times, as I have done with my own mum, a drink, or a piece of fruit, or changing her position in the tub chair is all that is required to settle her down and make her more comfortable, rather than one more dose of Ordine.

Ordine is Morphine and I constantly worried that mum was given too much of it unnecessarily. I was told that Ordine is ‘good for them’ as it stimulates their appetite – great for mum as eating is the only pleasure left in her sad life – BUT IT ALSO DOPES THEM OUT and causes constipation!

I had no leg to stand on because in sharing my feelings and concerns, the fickle finger of blame pointed to the disease. It’s the Alzheimer’s. Is the Alzheimer’s therefore being used as an excuse to not provide focused and centred care?

So how do we find a balance that is best for the person with advanced Alzheimer’s?

When it seems too easy for nursing staff to just give another dose? “That’ll settle her.”
How can we know and trust these decisions are well INFORMED?

I have asked this question directly and have not received an answer.
Who knows? “They” do.

But “they” of course will never admit that this is the easiest solution for staff who don’t have the time or don’t take the time – 20 seconds even – to ensure there is a simpler fix for the poor defenceless person at the mercy of “their care”.

Is this negligence?
Is this just “the way things are”?
It’s the system and you can just like it or lump it.

Is it us? The families, the daughters, and all the other carers, the ones who suffer just as much as the poor helpless person with advanced dementia that need to just shut up and put up with it?

I say NO.

This is a serious issue and I don’t have the answers.

I invite you, the reader, to think about all of this as you go through your own Alzheimer’s journey with your loved one.

Try to see past the pain, heartache and helplessness, and if you can, find even the smallest thing ‘that can make a real difference’.

I appreciate that nursing homes are not all the same.

Don’t be afraid to ask questions. Be prepared to receive unsatisfactory answers, and celebrate the good ones. Always question medications – their purpose, benefits and effects. Keep yourself well informed and above all, don’t give up on that wonderful person who needs your love and companionship now more than ever.

My question still remains; how do people working in nursing homes (to whom we are paying lots of money) make INFORMED decisions on medicating our poor defenceless loved ones that are living with advanced Alzheimer’s?

As I said above, I don’t have many answers but I do have heaps of questions.
How about you?
What would you do?

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Ten Early Signs of Alzheimer's Disease

29/8/2015

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Ten Early Signs of Alzheimer’s Disease

As we get older our brains also age and we lose some of our capacities naturally.

For the 1800 people who are diagnosed with dementia each week in Australia (that’s 1 person every 6 minutes), their brains start to die, and the person deteriorates over time. This is not what we expect out of normal ageing.

In this post I share with you the early changes we noticed with my mum, in the hope of making it easier for you to recognise some of the symptoms and behaviours that are early warning signs of this disease. You must also understand and accept that Alzheimer’s disease and other forms of dementia present many and varied effects in each individual person.

Number 1.      Lost for Words

For almost two years before her diagnosis mum would search for words in conversation. The context did not matter as she struggled to find the right word. She would say ‘that’ instead of the word she was struggling to recall, so her speech was filled with: the ‘that’, her ‘that’, let’s ‘that’, it was ‘that’, or what ‘that’.

At that time, we did not know that we’d have to face the anguish of this sinister disease. The earlier the diagnosis, the better for the person, their loved ones, and the carers.

Number 2.      Hearing v Confused Conversations

Mum loved to chat. Because she was deaf in one ear she’d sometimes miss parts of a conversation - we were used to repeating things. She really enjoyed having a chat!

But she began to intermittently ‘switch off’ and lose interest in what was going on. At times she was nervous and defensive. I could see her trying to listen intently and then just walk off in frustration, which was her way of coping with a situation she did not fully understand.

This change in behaviour was the disease taking a little more of its hold. Most conversations were confusing to her. She needed lots more time to think and process information.

As difficult as this was to deal with, it was even more difficult for mum to make sense of what was happening to her. It was important to me that mum did not feel isolated or left out, but how do you help your mum to be more involved in what was going on around her once more?

Number 3.      Mixed Cutlery

Have you ever placed the spoons or the forks in the wrong place in the cutlery drawer? Most of us have done this at one time or another.

Mum started doing this regularly and was not aware of how mixed up the cutlery was. She was unable to recognise the individual pieces.

To not make a big issue of it and make her feel bad, I would just put them back in their correct place. In the big scheme of life this thing didn’t really matter, but the road we were travelling on was leading us to that sneaky thief of life called Alzheimer’s disease.

Number 4.      Loss of Spatial Awareness

I became aware of this at the dinner table. Mum would reach for the salt and pepper and miss them – her hand was going just to the right of them. The same would happen again when reaching for cutlery, a glass, or other items on the table. I thought there may be something wrong with her eyes or her arms until I researched the disease to learn that this indeed, is a symptom.

It wasn’t too much of a problem until it later began to affect her driving. Losing her driver’s licence was one of the most devastating days of her life. On that day, she made it perfectly clear that on top of everything else, she lost her independence as well. I will never forget her cries of sorrow.

Number 5.      Confusion, Fear, Confidence

For the person living with dementia, all these symptoms create confusion, and confusion translates into fear. Mum found it difficult to understand what was happening to her and she would avoid talking about it, so for me it was a challenge to understand her emotions. She felt confused and I felt powerless to assist her appropriately.

Alzheimer’s sufferers question their confidence as little by little their capacity to perform ‘normally’ is stolen away from them. Everyday tasks that were once easily done unconsciously, become frustrating to deal with as the brain loses those connections. One thing is for sure, no-one deserves this cruel disease.

Number 6.      Who are Those People?

Not recognising reflections is common for people living with Alzheimer’s. Eventually they will not recognise their own reflection in the mirror.

Looking at the windows at night mum would often ask us who were those people and what are they doing here. She was looking at our reflections as we moved around the room but couldn’t make the connection between the two. Living alone was frightening for her. When I phoned she would tell me about being scared by those ‘other people’ in her home.

One way to minimise this problem is to close all curtains before it gets dark and remove or cover all mirrors around the home.

Dealing with the ‘imaginary people’ (while acknowledging that perception is reality) requires lots of sensitivity and important decisions. How do you decide where the best interests of a person lie along that fine line of personal independence? When is it right or wrong for your loved one to be living at home alone?

Number 7.      Loss of Time and Day Perception

It wasn’t long before mum lost track of time and was confused about what day it was. The short term memory loss of Alzheimer’s prevented her from recognising clocks and her watch. Eventually she simply stopped looking at them as they had no meaning for her.

It’s difficult to watch someone you love lose their ability to function in this way. Day to day tasks that most of us take for granted become challenges to them and eventually disappear from their existence.

To support the person through this, it is very important to use some routines to simulate the rhythm of life as they lived it before their diagnosis. For mum it was important to go to church every Sunday. She was blessed to have a very special friend who would be calling her the night before and again on the day to remind her, take her to church, and bring her safely back home. A friend in need is truly a friend indeed.

Number 8.      Lights On and Off

Leaving lights on throughout the home at night is better for the person living with Alzheimer’s. This makes it easy for them to see where they are going.

Problems arise when they cannot turn a light on at night. They may search for the switch and not recognise it, or forget that turning a light on is actually an option. Darkness is frightening and creates more confusion, increasing the possibility of an accident causing injury.

How can you help? Remove any items and furniture that they may bump into or trip over and install sensor lights. When I was visiting mum I would leave the lounge room light on at night which lit up the hallway for the toilet and bathroom and the way into the kitchen.

Yes electricity costs money, but how much is your loved one’s comfort and safety worth?

Number 9.      The TV Remote

Mum lived alone and TV was a good companion. The Greek channel was her favourite and she loved the soapies and music shows. With horrible dementia creeping in, this joy of light entertainment was so cruelly taken away from her as she began to struggle with the remote.

Turning the TV on, getting the right channel and adjusting the volume became a big challenge – enough to cause her frustration, anger and tears.

There were (and still are) 445 km between us, so it was impossible for me to ‘just pop over’ and help her. I would step her through it over the phone which sometimes worked and sometimes didn’t. I often called on nearby family members to call in and help her out. How I wished I could have been a genie!!!

Number 10.    Tuning Out

People with Alzheimer’s have difficulty taking in many sights and sounds all at the same time. Their brain can’t cope with all the stimulation and this adds to their confusion and worse, it increases their feelings of isolation and exclusion.

They cannot take in everything that is happening around them, and so deal with it by simply tuning out. When you notice a blankness in their eyes, particularly when out in the community or at a family gathering, this is what may be going on for them.

Help them with love, and the dignity and respect they deserve, and you will intuitively know what to do to ensure they also enjoy the environment they are in.

Footnote: Mum is in her 10th year now and has end stage dementia – a cure will be too late for her, and many others like her. Scientists need cold hard cash to find this cure now.

We have taken on a fundraising challenge and in sponsoring us, you are making a valuable contribution to this cause.

Every person who receives a diagnosis today needs your tax deductible donation now.
https://neurachina2016.everydayhero.com/au/theona-pete

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Support, Understand, and Support some More

29/5/2015

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It’s hard for people who have not been touched by Alzheimer’s to understand what it’s like. They have no concept of how difficult it is for the person with the disease and the people who care for them. Like me, a daughter watching her mum deteriorate piece by piece. You mourn for the person every day as their capacity diminishes. It’s cruel, it’s heartbreaking and very sad, and it can go on for years.

People living with Alzheimer’s need lots of love, support and understanding – particularly from family and friends – and it matters not what stage of the disease they are in.

“He or She doesn’t remember me” is no excuse to abandon the person.

Furthermore, as dementia education and awareness continues within the health system and to the general public, people from all walks of life will better understand the challenges and consequences the disease brings.

Eventually I hope that the ignorance and perhaps fear (perceived or otherwise) of how to deal with dementia will diminish, and each person is treated with understanding, respect and dignity, wherever they are.

In the current edition of NeuRA magazine there is a story about a 46 year old woman with the early symptoms of Alzheimer’s disease. She says “I want people to understand how we feel. People with Alzheimer’s need support because we are trying our best. Trust me, we get frustrated enough with ourselves to please don’t get upset with us when we don’t understand. We are a bit slow.”

To read the whole story go to http://neura.edu.au/news-events/neura-magazine and it’s the winter 2015 edition.

When you help someone with Alzheimer’s smile, it brightens their day as well as yours. There is a sense of wellbeing that is difficult to describe. You have to experience it, even if only for a fleeting moment.

Support, understand, be patient and support some more.

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Using Alzheimer’s as your Excuse to NOT see Mum this Mother’s Day?

9/5/2015

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Alzheimer’s is the exact reason why you SHOULD be seeing your mum on Mother’s Day.

“She has dementia, she doesn’t remember, she doesn’t understand, it’s just another day for her. She doesn’t even know what day it is and won’t remember a thing after we’re gone. It’s not going to make any difference to her.”

The excuses go on and on, don’t they?

Just this once, think about the woman who is your mother instead of making it all about you.

Think of what you can do for her. Think about creating special moments just for her and live them with her.

Love her, care for her, respect her.

Create precious moments of happiness for her.

Give her your time and your love. That is the best gift for any mother. You can’t buy gifts like this anywhere. They are made and created from one human being to another.

In spite of Alzheimer’s, your mum can still see, hear, think her own thoughts, and most of all, she can FEEL.

Her emotions are as real as they always were.

She can smile and she can cry and she can feel every emotion in-between.

She is still ALIVE.

She did not seek or want this cruel disease. Nor does she deserve to have her life taken away from her piece by piece by this incurable disease. She wanted to live her life and grow old as a mother, grandmother, wife, sister, aunt, and friend.

Don’t deny your mother the gift of you.

She still needs her family and friends, as well as love, support and companionship. Help her live with the disease on her terms. Give her meaningful moments and live with her in those moments, however brief those moments may be.

Don’t abandon her. Leaving her alone to cope with dementia is cruel, it is selfish, and it is a betrayal of love.

She may not be the mother you once knew, but the essence of who she really is still lies within. It’s up to you to find it.

Don’t allow this insidious disease to dictate your relationship with your mother.

Don’t allow this insidious disease to deny wonderfully unique memories to the both of you.

No matter what stage of the disease your mum is in, it’s sad and heartbreaking to deal with. It’s a very difficult time. All the more reason to give her your time and your love on this day and always.

Happy Mother’s Day to all Mums.

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Mum is 78 today...and she doesn't know it.

20/1/2015

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It’s my mum’s 78th birthday today and she doesn’t know it. With all my heart I know how much she wanted to grow old and be a doting grandmother and mother and care for her family whom she adored, even though she never told any of us how much she loved us.

Her life, her hopes and dreams have been taken away. She lies in a tub chair all day wondering why this has happened to her. She cannot understand why she is amongst so many other older people. She cannot understand why she is not getting better. She wants to leave the nursing home that has trapped her.

The underlying hope is that someone brings a smile to her face, that she is comfortable and not in pain. That someone will feed her when she is hungry and will give her a drink when she is thirsty. That someone will notice when she is cold and cover her up, and when she is hot they uncover her.

She is still uncomfortable and embarrassed when it’s necessary for two female nurses, or one female and one male, to change her pad, particularly after a bowel movement. She depends on these people to bathe her and keep her clean.

Her biggest pleasure in life is eating. Fresh fruit, sweets and chocolates are her favourites and she will devour a fresh caramel tart in seconds! As long as someone feeds her.

My hubbie and I would often take mum out for dinner or for coffee and cake and she loved it - until she could no longer walk. How I miss those days. How I wish I could make her better and take her out again.

We communicate with sound, eye contact and with body language. I read her face to work out what she needs. Mum can no longer talk.

Mum has Alzheimer’s Disease.

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A Rockmelon and a Knife

Medication v Emotional Support for People with Advanced Alzheimer’s

Ten Early Signs of Alzheimer's Disease

Support, Understand, and Support some More

Using Alzheimer’s as your Excuse to NOT see Mum this Mother’s Day?

Mum is 78 today...and she doesn't know it.

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A Rockmelon and a Knife

﻿Medication v Emotional Support for People with Advanced Alzheimer’s

Ten Early Signs of Alzheimer's Disease

Support, Understand, and Support some More

Using Alzheimer’s as your Excuse to NOT see Mum this Mother’s Day?

Mum is 78 today...and she doesn't know it.

Author

Archives

Categories

Medication v Emotional Support for People with Advanced Alzheimer’s