25. It’s good that you are here!

Lord, our Lord, how majestic is your name in all the earth! … When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is humankind that you are mindful of them, human beings that you care for them? You have made them a little lower than the angels and crowned them with glory and honour (Psalm 8:1-5).

~

God, through the Psalmist, emphatically reminds us who we are. We are not nobodies, but somebodies! We are the work of God’s hands. God is mindful of us: we occupy His mind. God cares for us. God shares His crown with us – giving us glory and honour that we don’t deserve nor can ever earn. We are Somebodies.

A person may be living with dementia, but that does not change the fact that they are a person first and foremost. They have personhood. That is God-given. They are a Somebody – and other Somebodies (like us) should treat them as such.

Hammond Care held its International Dementia Conference in Sydney in early July. One of the speakers was Professor John Swinton from Aberdeen University. We have already met him in blog posts 15 and 17 (Discussing Dementia 2: On Caring) and in blog post 24 (Faith for Life). The title of John’s talk was “Taking time for those things that the world considers trivial: Choosing to be with and for people living with dementia”.

John shared about the tyranny of the clock, how ‘busyness kills compassion’, and that ‘loves takes a certain kind of time’. We all need to slow down and take time for the things that the world considers trivial – including those living with dementia. We all need to develop “a spirituality of timefullness’, realising that “dementia is a place of embodiment and slowness”. I’ll say some more about this in a later blog post.

While John’s talk wasn’t recorded, he was interviewed about his talk. The title of this video is “The significance of time for understanding people with dementia”. You can watch it here:

In his talk John quoted the words of Thomas Aquinas, the thirteenth century Dominican friar and theologian. John first told us Aquinas’ words, then invited us to turn to our neighbours and say it to them. The result was amazing. A conference room full of 1,000 people came alive. So what were Aquinas’ life-giving words?

It’s good that you are here. I’m glad that you exist!”

I don’t think I have ever heard a more profound affirmation from one Somebody to another Somebody. We exist because God created us, however well or unwell we may be.

It's good that you are here

I invite you to share those words with others you meet. I also invite you to share them with people living with dementia, who desperately need to be reminded how valuable they are. They are Somebodies like us!

So, dear reader, it is good that you are here (though I wish we were meeting face-to-face). And I’m glad that you exist.

With blessings,

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24. Faith for life

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life (John 3:16).

~

This one verse from the Gospel of St. John is arguably the best known verse in the whole Bible. It reminds us that God is a God of love, and that His Son Jesus willing came down to earth for us: living, dying and rising again. The promise is that anyone who believes in Jesus – anyone who has faith – will have life now and life everlasting. That is the Gospel – the Good News – in a nutshell.

bible-book-1940x900_34765

Yet this is only one verse in one chapter in one book of the 66 books of the Bible. There are lots of other fabulous verses, but they can be hard to find in such a big book. Many older folk long to read the Bible, but the print is often too small. If the print is made bigger then the paper needs to be made thinner, or else the Bible becomes thicker and heavier. Thin paper tears, and heavy books are hard to hold.

Hammond Care, in conjunction with the Bible Society and Professor John Swinton (Aberdeen University), have produced a series of resources entitled “Faith for life: Biblical resources for people with dementia”. Instead of heavy books and thin paper, they are light-weight and made of long-lasting polymer – just like Australian banknotes!

Engaging with Faith for life

In the booklet “Engaging with Faith for life” John Swinton writes: “The Faith for life materials open up the healing beauty of the Bible in ways that enable people with dementia and those offering care and support, to hold on to God even when the memory of God can seem elusive and difficult. This is an important resource for an important group of people”.  You can read the whole booklet here: Engaging with faith for life.

Page 10 of this booklet explains how the resources were developed. They were “thoroughly tried and tested” by targeted focus groups, people living with dementia and their families, and HammondCare residential care staff and pastoral care staff. The end product incorporates the principles of good dementia design: size, materials, colours, images, font, language and format.

The resources fall into three different categories: Books, Cards (double-sided, with a picture on one side and text on the other), and an A-frame (the picture on the side facing the person with dementia and text on the side facing the person using it). I have included some scans of the cover and content of each resource, noting that they are protected by copyright.

Books:

Jesus loves me: presents the love of Jesus simply and clearly.

Jesus loves me 1-11

Jesus loves me 2-3

Time with Jesus: provides colourful, interactive devotional moments celebrating the life and teaching of Jesus.

Time with Jesus 1A  Time with Jesus 1B

Time with Jesus 2A  Time with Jesus 2B

He’s got the whole world in His hands: contains devotions that relate to current events for those who enjoy following the news.

World 1A   World 1B

World 2A   World 2B

Cards:

God is so good: provide evocative photos matched with clear and familiar devotional moments celebrating the goodness of God.

God is so good 1A   God is so good 1B

God is so good 2A

God is so good 2B

Words of Hope: a series of 20 devotional cards matching a beautiful photo with a familiar Bible verse and hymn.

Words of Hope 1A  

Words of Hope 1B

Words of Hope 2A  

Words of Hope 2B

Textures of God’s love: encourages devotional engagement with God’s love expressed through the Bible and in beautiful photos, familiar textures or objects and prayer.

Textures 1A  Textures 1B

Textures 2A.jpg  Textures 2B

A-frame:

Yesterday, today, forever: a collection of devotions on Psalm 23, The Lord’s prayer, Lent and Advent.

Yesterday today forever 1

Yesterday today forever 2

Yesterday today forever 3

On page 3 of the “Engaging with Faith for life” booklet we read: “Those who have an active Christian faith or background can continue to interact with the Bible in ways that enable them to grow in their relationship with God. Those who are new to the Christian faith may discover the richness of God’s word”.

It is the hope of those who produced “Faith for life”, and my hope, that every reader may come to know the love of God. Through faith in Jesus may they enjoy the wonderful gift of eternal life.

With blessings,

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23. Is it dementia?

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me [St. Paul], or seen in me—put it into practice. And the God of peace will be with you (Philippians 4:8-9).

~

Hands up 2

Hands up if you meet someone and can’t get their name into your head.

Hands up if you often misplace your car keys.

Hands up if you leave a room intending to do something, only to forget what you were going to do.

Does that mean that you have dementia? Thankfully, no. The reality is that as we age we find it harder to bring things to mind. I have found the simplest thing to do is ask people for their name – and then use it during the subsequent conversation! (Another strategy is to focus on their voice and see if that will draw out the name. Sometimes I will run through the alphabet and see if their name pops into my mind. Sometimes I will turn it into a game: “What’s the first letter of your name?”. The person will often play along, and the mental game is remarkably effective in getting both their first name and surname – and sometimes other details about them as well).

If you misplace your car keys, simply put them in the same place each time. Create a new habit. It won’t take long, and it will save you a lot of frustration.

If you leave a room and forget the task you’re supposed to be doing, the simplest thing to do is backtrack. Go back towards the room, and usually the task will pop into your head. Try it – it works!

These three “hands up” scenarios are normal signs of ageing, not usually signs of dementia. I often quip that “If you can remember that you’ve forgotten, you don’t have dementia”. There’s a lot of truth in that statement. Hands up if you agree!

Hands up 2

However, if you can no longer recognize people or remember their names, if you can’t remember what the car keys are for, and if you can’t follow through a task, then you should see your Doctor.Andrew Rochford

A Doctor I can recommend is Dr. Andrew Rochford, though I’ve never met him in person. Instead, I have watched him online, and he’s definitely worth watching! Why? Because he can help you to answer a vital question “Is it dementia?”

In my original post (25th June 2018) I went on to recommend a Dementia Australia website called “Is it dementia? A resource for recognising the signs of dementia”. I supplied a link, then spoke about what was available on the site. You can read the rest of my original post below.

Sadly the website was taken down at the end of June 2018 due to the cost of hosting it. This wonderful resource is no longer available online. However, there is a DVD which I will endeavour to purchase. I’m not sure how that will help you as you’re looking at this online, but stay tuned!

All that said, my original question is still worth asking: “Is it dementia?” It could simply be the decline of normal ageing. It could be delirium, caused by something like an infection, that comes on quickly and is able to be treated. It could be depression.

So what should you do? Consult your Doctor and get a diagnosis. But don’t go alone – take along someone on whom you can depend: someone you can trust, who will keep a level head, who will do the listening and write down what the Doctor says.

How can you remember all that? They all start with the letter “d”!

With joy and delight,

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The original post from early June continued like this:

Dementia Australia has created an excellent website called “Is it dementia? A resource for recognising the signs of dementia”. The link is:

www.isitdementia.com.au

What impresses me about this site is that it looks at seven different “Industries”. You can see this on their home page:

Is it dementia - home page

The “Community” tab brings you to the “Introduction – Dementia in the Community” screen:

1. Introduction - Dementia in the community

This enables you to watch four different videos: The Introduction, The Tricky Passenger, The Queue Jumper, and The Conclusion.

You can see Dr. Andrew Rochford in action in the Introduction and Conclusion. Each screen allows you to access Dementia Australia Fact (Help) Sheets, read a transcript of that video, and show the captions as you watch the video. Dementia Australia has thought of everything!

Why am I so keen on this site? Because it’s true to life! We know what it’s like when people jump the queue. Are they doing it deliberately, or not? That’s the key!

It’s true to life because dementia doesn’t exist in isolation. It affects people, and people exist in Community. They also go shopping (Retail), use Transport, call on  Emergency Services, and so on. It is up to us to make life easier for those living with dementia, wherever and whenever we may be. Sites like this, whether viewed alone or as part of a formal industry training program, are vital.

It’s true to life, because life is precious. On January 6th 2017 Bernard Gore, an elderly man living with dementia, got lost at the Westfield Bondi shopping centre.

Bernard Gore

Bernard entered a stairwell and could not find his way out. Tragically he was found dead three weeks later, even though people searching for him had been close by. What made it all the more tragic was that a number of people in the shopping centre, including shopkeepers, saw how confused he was, and did little to help. You can read the story here:

https://www.dailytelegraph.com.au/news/nsw/bernard-gore-elderly-man-found-dead-in-shopping-centre-was-just-metres-from-wife/news-story/33ba9b72040a93ac1d0997ccdea9bd31

If people had viewed the “Retail” videos on this website perhaps Bernard would still be alive? That’s definitely true to life!

In our Bible reading St. Paul urges us to think about the right things – and then to put that into practice. Think about this: Is it dementia? And if so, put what you learn from this site into practice. What you watch is true – and it gives life.

With blessings,

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22. What can we do with a dozen or two?

Jesus went up on a mountainside and called to him those he wanted, and they came to him. He appointed twelve – designating them apostles – that they might be with him and that he might send them out … (Mark 3:13-14a NIV).

~

2018-06-02 09.21.13

Last Saturday morning (2nd June 2018) I had the privilege of leading “Discussing Dementia 1: An Overview” at Roseville Uniting Church on Sydney’s Upper North Shore. About two dozen people courageous saints attended, learning together and sharing the delicious morning tea.

2018-06-02 09.21.34

Some people may think that two dozen is quite a small number, but we should never forget the impact that a small group of people can make. Jesus Himself only chose 12 apostles. The world “apostle” comes from a New Testament Greek verb which means “to send”. We see the root “post” when we talk about “posting a letter” – in other words, “sending a letter”. The “apostles” are therefore “those who are sent” – those sent by God to do His will. Those 12 apostles shared the Gospel – the Good News – with others. The Christian Church is the result: arguably over 2 billion people in the world today who claim to be Christian – to be followers of Christ!

What can the two dozen people who attended my session at Roseville do? They can help educate others about dementia, reducing its stigma and ignorance. They can support those who are living with dementia and their carers. They can learn more e.g. through the two University of Tasmania MOOCs (Massive Open Online Courses) or in an EDIE session with Dementia Australia (pictured below) or by reading posts on this blog. They can tell others about my dementia sessions, and not just encourage people to attend, but come along with them for companionship and support.

EDIE flyer a

Above all, they can remind people that while dementia is a form of brain damage, the person living with dementia is made in the image of God, that God has breathed His life into them and given them life, and that God will never leave them nor forsake them. They can tell the wonderful Good News that while a person’s brain and body may be perishing, the person’s spirit remains whole and well and strong. Dementia may be the second leading cause of death in Australia, but nothing can kill the spirit!

I began Saturday’s session by congratulating the two dozen for having the courage to come to a session about dementia. I end this post by congratulating you for accessing my blog and reading this post. As God has sent me out to speak about dementia, may you hear His call and allow yourself to be sent out also.

With blessings,

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21. Tim England: A Dementia Champion

27 Now you are the body of Christ, and each one of you is a part of it.28 And God has placed in the church first of all apostles, second prophets, third teachers, then miracles, then gifts of healing, of helping, of guidance, and of different kinds of tongues. 29 Are all apostles? Are all prophets? Are all teachers? Do all work miracles? 30 Do all have gifts of healing? Do all speak in tongues? Do all interpret? 31 Now eagerly desire the greater gifts. And yet I will show you the most excellent way… LOVE (1 Corinthians 12:27-30).

~

To more fully understand dementia, and in turn to share this with others, it is vital that I keep up-to-date. I regularly look at different website (such as Dementia Australia, Alzheimer’s Research UK, Queensland Brain Institute, and Meaningful Ageing). I follow different organisations through Facebook, reading the articles and watching the videos which they post. I read current journals and try to read current books – particularly those which concern the forgotten dimension of spirituality and dementia.

A journal which I can definitely recommend is the Australian Journal of Dementia Care. Its articles are easy to read, informative, and current. In the February-March 2018 edition (pages 18-19) I was interested to read “A tale from a dementia champion”.  You can read the article by clicking this link:

A tale from a dementia champion

The Champion is Tim England. Tim has been gifted by God to be a Teacher, and he teaches with Love.

Tim England

Tim graduated in late 2016 with a Bachelor of Dementia Care from the University of Tasmania, and has practical experience working in the community with people living with dementia. He describes himself as follows:

Dementia Care specialist

Having attended one of Tim’s public presentations I can certainly recommend it. You will receive a very helpful booklet to take away:

The Facts about dementia - cover

While some of Tim’s content overlaps with the content in “Discussing Dementia 1: An Overview”, he includes information about his local region – the Ku-ring-gai region in Sydney’s north – and speaks about how it could become a Dementia-Friendly Community.

Dementia-Friendly communities

It is worth going to Tim’s website: www.dementiachampion.com and finding out more:

Website content

If you live in Sydney why not attend one of his sessions? You can never have enough education. Better yet, if you live in the Ku-ring-gai region, why not work with him and others to develop a Dementia-Friendly Ku-ring-gai!

With blessings,

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20. A Word of Hope

Matthew 6:25-34

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life? 28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labour or spin. 29 Yet I tell you that not even Solomon in all his splendour was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Memorial service candles

Last night I was privileged to lead a Memorial Service at Northaven (Turramurra, NSW). We remembered those residents who had died in the past year. This was attended by relatives or friends of 11 of those residents, as well as current residents, staff, visitors and volunteers.

I thought that I would share my “Word of Hope” with you, my faithful readers. May it help you to see why I have such a passion for ageing and dementia.

A Word of Hope

In 2009 God called me out of Parish ministry into Aged Care. I announced it to my congregation with the words: “I am becoming a Uniting Church Ageing Chaplain”. Some of the people thought that was very funny: “an ageing Chaplain” – as if they weren’t ageing too! Can I say that since I started here in July 2009 – almost 9 years ago – I have seen a lot of ageing!

One of the problems of working in full-time Aged Care is that I don’t meet our residents when they are full of life and vigour. If a person doesn’t have significant care needs they simply can’t come into the Hostel. The Nursing Home is full of residents who are frail, palliative, or living with end-stage dementia. That’s the nature of aged care. We are all living longer, with all of the health problems that go with age. As the old joke says: “I will never be over the hill. I’m too tired to climb the hill!

Some people come to the Hostel or Nursing Home kicking and screaming. Others come placidly and peacefully. Some don’t understand where they are, while some fully understand and make a conscious decision to make the most of it. Some will settle quickly into their new home, while others will struggle.

I can’t remember what it was like when you – if you’re a resident – or your loved one first came to Northaven. I DON’T know how long it took for you, or for them, to settle in.

As I look at the list of names on our list I DO know that each resident, in their own way, endeared themselves to others – staff, residents, visitors, volunteers. I remember dear one resident complaining every Wednesday morning that she couldn’t go to Worship because she hadn’t had breakfast! Another greeted me with a winning smile every single visit – when sometimes she didn’t even smile at her husband. A third resident, because she was so mentally alert and so generous in spirit, touched everyone’s hearts. These are precious memories of precious people.

Many of our residents, particularly in the Nursing Home, are living with dementia. Dementia is challenging to all of us, because the person is slowly entering a world of their own – “the land of forgetfulness” as Eileen Shamy called it. Their memory fades, their behaviour can change, they lose the ability to speak, and eventually their physical functions diminish. They need help with showering and dressing, with toileting, and with eating. People who were once so independent become totally dependent on others.  It’s a challenge.

As I think about each of the residents on this long list, I am reminded again and again of how much they have taught me. So it isn’t true that you can’t teach an old dog – or an ageing one – new tricks!

The first thing most of these residents have taught me is the value of living in the present. Many could not remember their past, though we saw occasional glimpses of it. Their future was predetermined – Northaven was their final home. I remember once asking a dear resident on her 100th birthday: “What is the secret to living to 100?” She looked at me and said “I haven’t died!”. Ask a silly question … Many of our residents are living with dementia, and dementia is a terminal illness. In fact it’s now the leading cause of death for Australian women, and the second leading cause of death overall.

Most of residents on the list lived in the present moment. They lived in the NOW. They trusted others to provide for them in lots of different ways. They responded with love to those who showed them love. They weren’t burdened by the past, nor were they worried about the future. They simply lived in the NOW – and that was enough.

That’s what Jesus Himself tells His disciples to do in the Gospel of St. Matthew. “Don’t worry about tomorrow”, Jesus says. “Seek first the Kingdom of God and His righteousness, and all these things will be given to you as well”: clothing, food, drink, companionship, and peace. Trust God – for He will provide all your needs, according to His riches.

On another occasion, Jesus’ disciples ask him about prayer. He responds: “When you pray, pray like this: Our Father, who are in Heaven … Give us this day our daily bread”. What Jesus is saying that God our Father will give us the bread we need for that day – bread to eat, the companionship of those with whom we can eat, and so on. Jesus urges us to live in the now – to live for today. Jesus invites us to trust God in the here and now.

The famous words from the film “Dead Poet’s Society” are Carpe Diem: Seize the Day! Make the most of each day. Remember, it’s called the present, because it is a gift – a present!

The second thing each resident on the list has taught me is the value of care. Each resident needed and deserved care, and at Northaven we were privileged to provide it. That is, after all, God’s call: “To love our neighbour as we love ourselves”, to quote Jesus’ 2nd Great Commandment. Each resident reminded me that “it is more blessed to give than to receive” – because I had to give to them. But as I gave, I did receive: their smile, their affection, their love.

At the end of every single Worship service in the Nursing Home I walk around the room and bless every person by name. Many smile. Some kiss my hand. Some say: “Thank you”. One sings: “Jesus loves me, this I know”. Some will say: “And God bless you” – and my spirit soars and my heart sings, because I am truly blessed.

My friends, ageing and dementia are challenging to us all, but every resident has much to teach us. They – you – can teach us how to live with God in the moment – the present – the NOW. And they – you – can teach us the value of care – that we are blessed to be able to care for others, and blessed to have the humility to receive care.

Today, God invites us to live with Him in the present moment – and to journey with Jesus each and every day. God invites us to care for our fellow pilgrims on life’s journey, for we do not walk life’s road alone. So, may we “do unto others as we would like them to do unto us”, always remembering the truth that Jesus “did not come to be served, but to serve, and to give His life … for many” (Mark 10:45).

So may we be blessed, to bless, this day, and forevermore.

In the name of the Father, Son and Holy Spirit, AMEN.

 

With blessings,

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19. Blessing the children – 2

And he took the children in his arms, placed his hands on them and blessed them. (Mark 10:16 NIV).

~

I was recently asked by a resident’s daughter if she thought it was suitable for her grandchildren – our resident’s great-grandchildren – to visit their Great-Grandma in the Nursing Home. They used to see her regularly, but they haven’t seen her for nearly a year and are wondering why they can’t see her anymore. What was my response?

I said that as long as she prepared her grandchildren for the visit that they would probably cope better than most adults! They need to know that Great-Grandma is confused and that she probably won’t recognize them. They might see her crying. She will certainly look different to the last time they saw her, because she has lost a lot of weight and looks much, much older. However, while she might not remember who they are, they know who she is – and her heart will remember them.

I don’t yet know whether the great-grandchildren have been in to visit. I certainly hope so. The children obviously wanted to, and why deny them – and their beloved Great-Grandma – the gift of one another? Why protect them from an illness – dementia – that is the leading cause of death of Australian women? Why shelter them from pain and loss, when they will encounter it many times in their lives?

Preparing children to visit a loved one with dementia is vital. While we can talk to them, we can also use some of the wonderful children’s books which either talk directly about dementia, or else touch on it. In previous blogs I have spoken about the books “Wilfred Gordon McDonald Partridge” (blog 6) and “This is my family” (blog 18).

I recently came across two other books that I can certainly recommend: “The Smell of Chocolate” and “My Gran’s Different”.

The Smell of Chocolate

The Smell of Chocolate” is written by Barbara McGuire. It was produced by Alzheimer’s Australia WA and concerns a young boy named Ben whose grandfather Pog has Alzheimer’s disease. The first part of the book is the story, where Pog and Ben make a cake to welcome The Queen. The story ends with this line: “The thing is, Alzheimer’s can happen to anyone’s grandparent – even one as tall and smart as my grandfather, Pog”. The second part of the book is entitled “Pog’s Alzheimer Fact File”. It contains facts about Dementia, Remembering, Forgetting, ‘Delusions, Hallucinations and Confabulations’, Feeling Connected, Hugs, Communicating, Today and in the Future, and a truly profound page about Identity entitled “Same Special Somebody” (page 27):

The Smell of Chocolate p.27

The second book “My Gran’s Different” contains fewer words and some delightful watercolour-style pictures. It’s about a boy named Charlie whose “gran is different” from his friends’ grandparents. It’s written by Sue Lawson and illustrated by Caroline Magerl.

My Gran's Different

One page shows them both:

My Gran's Different Charlie and Gran

A sentence on the back cover says it all: “A story of the love and complete acceptance that only a child can give”.

As I re-read those two books and thought about our dear resident at work and her great-grandchildren, I couldn’t help but wonder whether or not she will be recognized as the “Same Special Somebody” – and whether she will receive the “love and complete acceptance that only [those children] can give”.

With blessings,

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