12. Uniting News – Reflection – 18.4.2018

Psalm 23 v4

Back in 2015 I walked into the Northaven Hostel lounge room.  Joyce and Judy were deep in conversation. They turned to me and said: “Ask Frank. He’ll know”. A 20-minute discussion ensued. Basically they were asking one question: “Do they (some of their fellow residents) know that they have dementia?” A month later I gave a talk about dementia. I expected a handful of residents, but 42 of the 48 Hostel residents came!

Joyce and Judy sowed the seed of a plant that is now called Discussing Dementia. Over the past three years I have led Discussing Dementia in different Uniting and Anglican Churches in NSW, attended by well over 500 people. Why the Church setting? Because our Churches are full of ageing folk who need to know the difference between normal ageing and dementia.

They need to be reminded that God is always with them:

Though I walk through the valley of the shadow of death (disease, disability, decline, dementia) I will not fear, for you [God] are with me” (Psalm 23:4).

They need to know that they are people made in the image of God, and that ageing and dementia can never take away their personhood.

They need to learn about dementia friendly worship, and how to visit their friends who are now living with dementia, often in residential aged care.

They need to be equipped to care for the carers of those living with dementia, and to run the race with them – a race that is sadly a long marathon.

They need reminding that in any and every encounter their spirit is talking with someone else’s spirit, all aided by God’s Holy Spirit: for “spirit talks to spirit”.

With blessings,

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11. Easter Awe

This is My commandment, that you love one another as I have loved you. Greater love has no one than this, than to lay down one’s life for his friends (John 15:12-13, NKJV).

During Holy Week I had the privilege of conducting a number of Easter services in different residential aged care facilities. I spoke about Jesus’ birth, life, death and resurrection. I used a single word to describe this – LOVE – and asked a series of questions to help my residents to connect e.g. Why was Jesus born in Bethlehem as a baby? Because of LOVE. Why did Jesus heal the sick? Because of LOVE? Eventually as I asked my questions, some of the people began to respond with the single word LOVE.

To make this idea more solid, I used a stone with the word LOVE etched into it. You can see the stone in this photo, alongside some knitted figures (Jesus in the manger; a man who I called Jesus; the donkey Jesus rode into Jerusalem).

Blog 11 - IMG_4945 LOVE

Whenever I asked my question, I held up the stone. My listeners could therefore both see and hear the word LOVE.

When I said that Jesus died on the cross, I held up the stone in one hand, and the carved wooden statue of Jesus’ face with its crown of thorns. This is at the left of the cross and praying hands.

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I asked: Why did Jesus die on the cross for us? Because of LOVE. I then walked around the room, standing in front of each resident. If necessary, I called them by name to gain their attention.

One by one, my residents looked at the face of Jesus and at the word LOVE. Some reached out and touched Jesus’ face or the cold stone. Another put their finger on one of the thorns. A lady, and a man, kissed Jesus. One lady said “Sad”. A man said “Jesus”. Yet another exclaimed “LOVE”. When I reached one dear lady a smile came onto her face, and she instantly burst into song: “Jesus loves me this I know, for the Bible tells me so …”. Many of the people in the room joined in!

During this whole encounter no-one got up, or spoke out, or broke the silence. To have this happen in a room full of frail aged residents and residents living with dementia, is a miracle in itself. Silence and stillness are very rare.

But there was a greater miracle. The miracle of God’s Spirit at work in the lives of those with broken bodies and brains! Their spirits, which are whole and well and strong, clearly connected with my story in word and object. My spirit spoke with their spirits, all aided by God’s Holy Spirit, and I saw and heard them come alive: through touch, kiss, word and song.

Jesus was in our midst, and we experienced anew His great LOVE: LOVE supremely expressed in the Easter story:  “Greater love has no one than this, than to lay down one’s life for his friends”.

We are God’s friends – and nothing, not even dementia, can take that way.

With blessings,

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10. Are we more than our brains?

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well (Psalm 139:14).

An expert in the law, tested [Jesus] with this question: “Teacher, which is the greatest commandment in the Law?”  Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’  This is the first and greatest commandment. 39 And the second is like it: ‘Love your neighbor as yourself.’” (Matthew 22:35-39).

The LORD God formed the man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being (Genesis 2:7).

Therefore, we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day (2 Corinthians 4:16).

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Dementia is an umbrella term for over 100 different kinds of diseases affecting the brain. The most common kinds of dementia are Alzheimer’s disease, Vascular dementia, Lewy Bodies dementia, and Frontal-lobe dementia. Put simply, dementia is a form of brain damage. But what is the brain, and how does it work?

I am privileged to have started the Bachelor of Dementia Care through the University of Tasmania. One of the two units I have been studying this semester is called “Neurospeak: Understanding the Nervous System”. This includes the brain and the spinal cord.

One of the Introductory videos used in the unit is called “How the Brain Works”. I don’t expect you to necessarily understand it, but it’s a great place to start:

The video presents a succinct explanation of the brain, some of its structures, and how neurons communicate with one another. It is deliberately scientific (or medical).

However, it makes some statements that are worth thinking about. It begins with the statement that the brain is “the seat of who we are and what we are; in short, we are our brains”. When talking about the frontal lobe, that part of the brain which processes the higher functions like thinking and decision-making, it states that the frontal lobe defines “us for who we are – to be who we are”. It ends with the bold claim that “we really are our brain”.

I would respectfully argue that we are much more than our brains! Eileen Shamy’s ground-breaking book about dementia published in the 1990s is aptly subtitled “More than body, brain and breath”.

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We are much, much more than a bio-medical entity! The Judeo-Christian faith asserts that we have been “wonderfully made” by God (Psalm 139:14) who breathes into us His breath and gives us life (Genesis 2:7). God gives each of us a unique spirit, and it is our spirit, not just our brain or body, which defines who we are.

We see this in one of the Two Great Commandments which Jesus quotes from the Old Testament. The first Commandment is to “‘Love the Lord your God with all your heart and with all your soul and with all your mind” (Matthew 22:37). I believe we can equate “heart” with “body”, “mind” with “brain”, and “soul” with “spirit”. So, we are body (heart) and brain (mind) and spirit (soul)! We are all three. This is God-given.

Why does this any of this matter? Because it fundamentally changes how we view people living with dementia! The video concludes with the statement that “we really are our brain”. If that is true for someone living with dementia, then who they are – their very identity – is being damaged and destroyed by dementia. Dementia gradually strips away their personhood, until there is no person left. We could then use with absolute confidence that dreadful expression: “the light’s on but no-one’s at home”.

I refuse to accept that. Firstly, my experience tells me otherwise. Even those with advanced dementia have personhood or identity. They can still feel. They can still teach me: to slow down, to live for the moment, to care. They can still speak to me, as my previous blogs “spirit talks to spirit” and “It is amazing” clearly demonstrate.

Secondly, scripture tells me otherwise. St. Paul writes in 2 Corinthians 4:6: “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day”. Put another way, while our bodies and brains may be perishing, our spirits – the inward ‘man’ – are being renewed. Our spirits are being transformed even while we are physically failing. While it is true that our bodies and brains suffer from ageing and disease, I am convinced that our spirits do not suffer from ageing or dementia. Our spirits remain whole, and well, and strong. Tom Kitwood defines that as “rementia” (re-mentia) – a topic for another blog!

So, by all means learn from the brain video. Marvel at what God has created. But please, don’t ever accept that “we really are our brain. We are far more than body, brain and breath. We are embodied spirits.

With blessings,

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9. Is there an App for that?

Can you send out lightnings, that they may go, and say to you, “Here we are!”? (Job 38:35 NKJV)

On 8th August 2017 the daily devotional “The Word for Today” listed the above Bible verse, and then commented:

“The Bible predicted modern telecommunications. Does that sound incredible to you? If so, consider this verse: ‘Can you send out lightnings, that they may go, and say to you, “Here we are!”? Fifteen hundred years before Christ, in the book of Job, God said that light could be sent, and manifest itself in speech … The fact that light can be sent and translated into speech wasn’t discovered by science until 1864 – nearly 3,300 years later – [by] British scientist James Clerk Maxwell … Samuel Morse, who invented the first telegraph and forever changed the world of communication, was a Bible-believing Christian”.

While I’m not necessarily convinced by the commentary, I am convinced that the world of communication has been changed forever. This blog, with the ability to include links to audio and video and documents, can be seen by anyone anywhere in the world.

One of the great things about modern technology is the rise of the App (short for Application). Did you know that there are quite a number of useful Apps on the Apple iPad to help people understand dementia?

iPad screen

These Apps include the Alzheimer’s Australia site, different kinds of Apps to train the brain (“ BrainyApp” and “MindMate”), a great site for Carers called “Care4Dementia”, an App to help us understand lots of the world’s cultures (“Cultura”), and Apps to help compile life stories (“Grey Matters” and “House of Memories”).

If you use your imagination, some of the standard Apple Apps can be used with people living with dementia. For example, use “Google Earth” to find the person’s childhood town or even house, and show them what it looks like!  That’s a powerful memory trigger.

A fun App called “Photo Booth” is great for a laugh – and laughter is sometimes the best medicine!

Sometimes we might hear a song and don’t know what it is. Try out “Sound Hound”.

As photos and music can be used so powerfully, why not create a short video with uploaded photos and music? Try using “Splice”. If you’d like an instruction manual for that please ask me. This was produced by two Macquarie University PACE (Professional and Community Engagement) students.

It’s obvious, but worth reminding you, that ”YouTube” is a great source of clips. One day I was leading musical reminiscence. One of our Hostel residents asked me if I’d ever heard a song called “Your feet’s too big”. I hadn’t. A quick search on my iPhone found a YouTube video. I played the audio through the PA system. The resident began to cry. She said that she used to sing it to her son when he was a baby. She hadn’t sung since. She was in her 90’s and her son is almost 70! Reminiscence can be that simple.

That’s a great list, so in July 2017 I put it on paper. I suggest that you print off this PDF, and if you have an iPad (or iPhone) install some of the (free) Apps. (If you have an Android phone or tablet try and find the Apps by name through the appropriate Store. That’s beyond me).

Some Apps for iPads

There’s no doubt that technology is a wonderful tool for journeying with those living with dementia. Try some of these Apps. Let me know how you go – and let me know of any others you find.

With blessings,

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8. “Thank you for rocking with me”

Jesus said: “And I will ask the Father, and He will give you another advocate (companion) to help you and be with you forever:  the Holy Spirit” (John 14:17)

As a Chaplain, let alone as a follower of Christ, it is vital that I maintain my spiritual health. One way in which I do this is to use daily devotionals like “Our Daily Bread” and “The Word for Today”. In the past I have used “Every Day With Jesus”, Scripture Union resources, and others. As a new Christian I used a devotional which helped me read the whole Bible in chronological (not book) order. What a wonderful way to understand the history of God and His people – “His-story”!

The devotional for 27th July in “Our Daily Bread” is entitled “Sweet Company”. Anne Cetas writes:

The elderly woman in the nursing home didn’t speak to anyone or request anything. It seemed she merely existed, rocking in her creaky old chair. She didn’t have many visitors, so one young nurse would often go into her room on her breaks. Without asking the woman questions to try to get her to talk, she simply pulled up another chair and rocked with her. After several months, the elderly woman said to her, “Thank you for rocking with me.” She was grateful for the companionship.

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The word “companion” comes from the latin “com-panis”. The “com” means “with”. We see this in the word “company”.  The elderly woman enjoyed the nurse’s company. The nurse rocked with the woman. The word “panis” means “bread”. We see this in the Italian bread called Panini. So, “companion” literally means “with-bread”. In English we would say that a “companion” is a person “with whom we eat bread”. That is, we share the most basic of all human needs – the need to eat – with someone else. We eat/dine with them. We “break bread” with them. It is something we do together. We are not doing it alone.

The young nurse was a faithful companion to the elderly woman – in every sense of the word. She was sharing one of the most basic of human needs: to be with someone else, to commune with them, to value them and their company, to sit in the silence of loving care. That was her calling.

That is also our calling! As we commune with those living with dementia we don’t necessarily have to use words. We need to use our eyes, our ears, and our heart. We need to imitate them, in the best way possible: to get on our rockers and rock along! We need to be patient, for communication takes time, especially in a brain that is damaged. And we need to expect: expect that God is with us, and expect that a miracle can happen: “Thank you for rocking with me.”

With blessings,

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7. It is amazing!

Grace and peace to you from God our Father and the Lord Jesus Christ (2 Corinthians 1:12).

One morning I went into the Nursing Home to see a resident who I will call Helen. Helen was living with end-stage dementia: “Dignity with Comfort” as the University of Tasmania “Understanding Dementia” MOOC (Massive Open Online Course) so rightly puts it. Helen lived in either a bed or a waterchair. She could not feed herself. The only words she ever said were: “It’s the cleaner. It’s the cleaner”. Why those words? No-one had an idea.

One morning I went into the Nursing Home and Helen’s waterchair was in the corridor. A staff member had put on a CD and the following song was playing:

The words are: Amazing Grace, how sweet the sound / That saved a wretch like me / I once was lost, but now am found / Was blind but now I see.

The hymn is, of course, “Amazing Grace”, written by the former slave-trader turned Anglican Minister John Newton. The version being played on the CD was being sung by Susan Boyle.

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I listened for a short time, said “Hello Helen”, and gently touched her hand. She looked at me and said, clearly and strongly: “It is amazing!”.

In hindsight, Helen’s words were so apt. Some people could well consider Helen’s life to be wretch-ed, and by extension Helen becomes a “wretch”. Far from it!

Helen’s mind may well be “lost” in dementia, but her spirit is “found”. It has found by Jesus, and for a short moment, it was found by me.

In many ways Helen is blind to the outside world, confined as she is in her bed or waterchair. But for a few short minutes Helen showed me that she still had eyes to “see” – spiritual eyes. Helen saw and heard and experienced God’s amazing grace, and she told me about it!

What did I see? I simply saw a woman in a waterchair. What did I hear? A familiar hymn, well sung. What did I experience? Nothing much – for I had no expectation that I would experience anything much at all. However, when Helen spoke, I was given a gift: a gift that I will cherish forever. Helen taught me that God’s amazing grace is truly amazing – and that God will perform miracles, if I have eyes to see, ears to hear and a heart to receive.

As Helen said: “It is amazing”.

With blessings,

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6. Wilfred Gordon McDonald Partridge

Don’t let anyone look down on you because you are young, but set an example for the believers in speech, in conduct, in love, in faith and in purity (1 Timothy 4:2).

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Years ago I came across a delightful book called “Wilfred Gordon McDonald Partridge” written by Mem Fox. Wilfred Gordon is a small boy who lives next door to a home for older people. Of all the people who live there his favourite person is Miss Nancy Alison Delacourt Cooper, because of the fact that she has four names as well. When Wilfrid Gordon finds out that Miss Nancy has lost her memory he decides to do something about it:

Besides being a heart-warming book, it tells us something important about memory. When I listen to the Blue Danube Waltz I don’t just hear some beautiful classical music. I immediately think of my mother because it was her favourite piece of music. I sometimes feel a sense of loss, because I miss her. Often I feel a sense of peace, knowing that she is now in her True Home. Her face comes to my mind’s eye, and I remember her Dutch-accented English and some of the stories she used to tell. What is happening? The music is a trigger to my memories and emotions. It brings lots of things about Mum to mind. (I should add that I also think of the Blue Danube Waltz being played at Mum’s funeral – of course in a version by the Dutchman Andre Rieu. That’s not unimportant, because I am related to him by marriage: my Aunt’s granddaughter is married to his son!)

When we use a trigger of some kind – a photo, an object, a smell, something to touch, a song or piece of music – then memory is awakened. That’s vital for reaching someone living with dementia: someone like Miss Nancy Alison Delacourt Cooper.

So, what triggers will you use to awaken someone you know and love?

With blessings,

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5. Oh, Good Grief!

Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like [those] who have no hope (1 Thessalonians 4:13 NIV)

I have always appreciated the wit and wisdom of Charles Schulz in his Peanuts comic strip. As a devout Christian, he used his craft to build the Kingdom of God.

Many of you would know Charlie Brown’s favourite words: Oh, Good Grief. He often didn’t know what was happening to him, and in three simple words he expresses his heart:

BROWN

There is a lot of grief in dementia. Like Charlie Brown, we often don’t know what is happening – and it is not as simple to express our heart. We all experience Grief.

Someone has said that dementia is ‘The grief that keeps on giving’. That is certainly my experience, both personally and professionally: through my mother’s journey with dementia, and through thousands of residents and families who I have been privileged to serve.

Someone much wiser than me speaks about ‘The 3 Griefs of Dementia’: the grief when the person is first diagnosed; the grief when they enter residential care; and the grief when they eventually die. That journey often takes many years. We often don’t know what is happening – and it is not simple.

In my calling as an Aged Care Chaplain I am often asked how I cope with all of this grief. How do I keep positive? What keeps me going?

It’s simple. I put my hope in Jesus. His death and resurrection tells me that death is not the end. Because of Jesus any death can be a new beginning – a journey to our ‘long Home’ as someone once said. In fact, death is the final healing. Of course I grieve, but I do not grieve without hope.

Jesus’ life, death and resurrection awes me, and so my heart cries “Oh!”. I know that God is Good. And I Grieve. I may not know what is happening, but in three simple words I can share with my friend Charlie Brown: Oh! Good Grief.

With blessings,

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4. To laugh or not to laugh

There is a time for everything .. A time to weep and a time to laugh … a time to be silent and a time to speak (Ecclesiastes 3:1, 4a, 7b NIV).

As an Aged Care Chaplain, I have the privilege of leading Musical Reminiscence in the Hostel and Nursing Home and in a separate Dementia-specific Home. I use songs on CD (or on iPod) with accompanying song sheets.

In a normal sing-a-long we would simply sing. Because it is Musical Reminiscence we do much more. I talk about the songs, tell stories and jokes, ask questions, and keenly observe the residents. Whenever a resident reacts I affirm their contribution:  I address them by name and seek to explore that contribution. For example, one day I played a song by an American jazz singer. The Hostel resident asked me if had ever heard a particular song by the same singer. I hadn’t, but I found a YouTube version on my iPhone and played it through the sound system. She became very emotional, and with tears running down her face she told me that she used to sing the song to her baby son to lull him to sleep. She hadn’t heard it since – and her son was now 66 years old!

One day I was leading Musical Reminiscence with high care residents. As it was June in Australia I decided to sing songs related to the theme of “Winter”. We sang familiar songs like “Wouldn’t it be luverly” (My Fair Lady: “all I want is a room somewhere, far away from the cold night air”) and “Edelweiss” (The Sound of Music: “blossom of snow may you bloom and grow”). After one particular song “Judy” – a delightful and very verbal lady living with dementia – clapped her hands with great excitement. Her face was beaming. Without any hesitation she shouted out: “You have a lovely voice. I can see it coming out of your ears”.

Most of the residents laughed. One, a frail-aged resident with excellent cognition, shook his head and said loudly: “I thought I’d heard it all”. Judy looked around the room, no longer smiling, a puzzled look on her face. She looked at me and said “You do have a lovely voice”.

What was my reaction to Judy’s funny comment? Internally I laughed, because the visual image was truly funny. But over eight years I have learnt a better way. I smiled at her, nodding my head, and after her second comment simply said: “Thank you Judy. That means a lot to me”. She beamed – affirmed, valued, and heard.

Although Judy’s brain is damaged by dementia, her emotions are whole. She feels, as we all feel. I feel for her.

So, every day I try and heed the (misquoted) words of Shakespeare: “To laugh or not to laugh – that is the question”.

With blessings,

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3. ‘spirit talks to spirit’

”… the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us …” (Romans 8:26).

I will never forget the day I visited an Irishman who I’ll call Patrick. Patrick could not converse, but he had been an English and History teacher and could recite over 25,000 lines of poetry. He used to correct volunteers when they misread poems!

I used to sing Irish songs with Patrick. He still had a good voice, and he loved the songs of his childhood and his youth: “Danny Boy”, “When Irish eyes are smiling”, “it’s a long way to Tipperary”, and others.

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One day I went to see Patrick. Our little cocker spaniel Pip had just been diagnosed with cancer so my heart was very heavy. I naturally didn’t tell Patrick what was going on. He could not have understood what I was saying. We sang a song or two, and then he looked at me and asked with true compassion: “How’s your little doggie?” I was shocked – and reduced to tears. How did Patrick know?

Because ‘spirit talks to spirit’. My troubled spirit was talking with Patrick’s spirit!

How? St. Paul tells us in Romans 8. God’s Holy Spirit helped me in my weakness by interceding through Patrick. God’s Holy Spirit connected with Patrick’s spirit. Patrick’s spirit, in a way that defies explanation, energized Patrick’s damaged brain, enabling Patrick to offer me God’s compassion and comfort. As it is sometimes said, “The Lord works in mysterious ways, His wonders to perform”.

As I’ve shared Patrick’s story over the years I find that other people’s spirits are touched. Perhaps it has touched your spirit? What’s happening? God is helping all of us in our weakness. And he is doing it through those whom we might least expect – those living with dementia!

With blessings,

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