18. Blessing the children

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

 ~

One of the saddest aspects of being an Aged Care Chaplain is that some families rarely visit their mother or father who is living with dementia. Sometimes the families stop visiting altogether. Families include adult children, and of course grandchildren (and great-grandchildren).

There are many reasons why families don’t visit, but one of them is a lack of understanding of dementia. We all need to be educated.

It is only in recent years that effort has been put into educating people about Younger Onset Dementia – a diagnosis of dementia when the person is under 65. This is particularly difficult when the person is a parent with younger children. How can we educate these, and other, children?

In a past issue of the Alzheimer’s Australia (now Dementia Australia) magazine In Touch I came across the following book review:

Blog 18 - This is my family

This Is My Family
This is a children’s book for kids with a parent with younger onset dementia. Jack is 13 years old. He lives with his Dad, his Mum, his sister Amy and his dog Sam.

Dad has dementia. Something isn’t right in daddy’s brain and Jack can help him to do things.  This kids’ book tells the story of Jack whose father lives with younger onset dementia.

An engaging tale for any child who knows a younger adult with dementia, it has been written by dementia care specialists, Barbara Chambers and Karen Harborow, with characters by renowned children’s animator Eddie Mort.

Having purchased and read the book I cannot recommend it highly enough. It is truly an “engaging tale” which is beautifully written and illustrated. Add it to your library today!

With blessings,

Signature to use

17. Discussing Dementia 2: On Caring – part 2

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid. Do not be discouraged (Deuteronomy 31:8).

I am with you always, to the very end of the age (Matthew 28:20).

Though I walk through the valley of the shadow of [dementia] I will not fear, for Thou art with me – Thy rod and Thy staff they comfort me (Psalm 23).

~

What a privilege it was to present “Discussing Dementia 2: On Caring” at St. Peter’s Anglican Church in Tamworth last weekend. Nearly 160 people journeyed with me as we explored what it means to be a carer.

Since posting “Discussing Dementia 2: On Caring” on 30th April, I am able to provide some additional resources. Once again I have linked these to the Summary by using the section numbers e.g. Section G is “Where is God in dementia?” Sub-section G.11 is “A Carer’s story #2”.

On Friday night two people spoke about their journey:

C.5 – A Carer’s Story: Karen Gurney.

Karen’s father Bob was diagnosed a year ago with Alzheimer’s disease.

C.5 A Carer’s Story – Karen Gurney

G.11 – Where is God in dementia? Rev. Rod Chiswell.

Rev. Rod spoke about his mother’s faith in her journey with dementia. Betty Chiswell was wife to Bishop Peter Chiswell. They faithfully served God in the Armidale diocese.

G.11 A Carer’s Story #2 – Rev. Rod Chiswell

On Saturday morning we heard from these carers:

C.5 – A Carer’s Story: Geoff Bennett.

Geoff’s wife Helen died in October last year from Lewy Body dementia. Geoff spoke by me by phone and I transcribed our interview. This includes a very moving poem addressed to Geoff’s wife.

C.5 A Carer’s Story – Geoff Bennett

G.11 – Where is God in dementia? Karen Gurney

Karen shared about where she has seen God at work in her journey with her father’s Alzheimer’s disease.

G.11 A Carer’s Story #2 – Karen Gurney

I have also managed to find some clips to watch or listen to about people who are well worth exploring: Christine Bryden (who is living with dementia) and Rev. John Swinton (theologian and dementia expert). Here are these links:

Christine Bryden – “All in the mind” radio program:

http://www.abc.net.au/radionational/programs/allinthemind/before-i-forget-early-onset-dementia/7045158

John Swinton:

G.8 – 2016.06.24 – John Swinton on aged care

I recently came across a wonderful definition of dementia by Dr. Allen Power.  I included this in the “Discussing Dementia 1: An Overview – Recap” (section B.2 – “What is dementia?”). Traditionally the definitions of dementia are medically (clinically) based e.g. “Dementia is a form of brain damage”. While that’s true, it’s certainly not the whole story. Allen writes:

“I began to define dementia simply as ‘a shift in the way a person experiences the world around her/him’. Once I did that, a whole new world of insights opened up for me” (p.18).

He also touches on the almost entirely negative presentation of dementia in our community and media e.g. “The dementia epidemic”; “The dementia tsunami”. He writes:

“The Alzheimer’s WA volunteer project which connects newly diagnosed individuals with volunteer opportunities in their community is one I always point to as a powerful antidote to the ‘tragedy narrative’ around dementia” (p.19).

Here’s the article in full:

B.2 – AJDC Vol. 7 No. 2 pp.17-19 Looking beyond disease

God’s call on my life is to “be a bearer of hope and joy”. If I can help to reframe that existing “tragedy narrative” – the story of “tragedy” – into a “God is always with us narrative”, then I am fulfilling God’s call on my life. I am also helping His kingdom to come in the lives of those living with dementia, and all who are called to care.

Let me end as I began with the words of the Psalmist: “Though I walk through the valley of the shadow of [dementia] I will not fear, for Thou art with me – Thy rod and Thy staff they comfort me”.

What is our hope and joy in dementia? That God is with us! That He will never leave us nor forsake us. That even in the darkest times God provides for us. That is the Good News.

With blessings,

Signature to use

16. Preventing Dementia MOOC 2018

Even to your old age and grey hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you (Isaiah 46:4).

~

In 2014 I had the privilege of completing the “Understanding Dementia” MOOC (Massive Open Online Course) through the University of Tasmania. As its name suggests, this is an online course which helps people to understand dementia. I was able to work at my own pace without having to do any exams. The lectures were given by qualified academics who had chosen excellent videos and clips. The whole course was free of charge, and I even received a certificate at the end.

In 2016 I completed the next in the series: “Preventing Dementia”. This was equally informative and sound.

My own “Discussing Dementia” presentations not only refer to these two MOOCs, but present some of their material. After all, why reinvent the wheel?

The next “Preventing Dementia” MOOC is open for registrations. To date nearly 13,000 people have signed up. The closing date for enrolments is 25th May, so sign up before it’s too late!

Preventing dementia MOOC 2018

The following link will take you to the UTAS site:

https://mooc.utas.edu.au/courses/preventing-dementia-2018-05

So, do yourself a favour. Learn, so that you can live well: living well now, and by helping to reduce your risk factors for dementia, living well into a ripe old age.

With blessings,

Signature to use

 

15. Discussing Dementia 2: On Caring

Jesus said:

“Blessed are the poor in spirit,
for theirs is the kingdom of heaven.
Blessed are those who mourn,
for they will be comforted.
Blessed are the meek,
for they will inherit the earth …

(Matthew 5:2b-5)

Discussing Dementia Poster 2018 - Top

On 4th and 5th May I will have the privilege of leading “Discussing Dementia 2: On Caring” at St. Peter’s Anglican Church in Tamworth. This builds on the first presentation “Discussing Dementia 1: An Overview” which I have been leading in Churches in NSW since 2016.

Each participant will receive a Summary handout of my presentation. This contains a number of web links to various sites, videos, audios and documents. It also refers to a number of documents. This Blog duplicates that Summary. It naturally falls short of the actual presentation which includes the Power Point presentation, actual Talk, and some interviews with Carers from Tamworth. If you’d like me to do the full presentation please contact me.

The “Discussing Dementia 2: On Caring” Presentation begins with a Blessing that was found in Booth Memorial Hospital, Cape Town, South Africa. It aligns with Jesus’ Beatitudes which we find in Matthew 5. How can we be a blessing to those who are ageing, not just those with dementia?

Blessed are they

I invite you to read it – again and again. Each day God is blessing us – and calling us to be a blessing to others.  Put another way, may we always remember that receiving God’s blessing is not primarily for our own benefit. Rather, God calls us to share His blessings. In a nutshell, may each of us “Be blessed to bless“.

With this in mind (and heart and spirit), I invite you to look at the Summary of my presentation. This can be downloaded below:

2018.05.04-05 Discussing Dementia 2 – Tamworth – Talk Summary ONLINE

However, you will notice that the above Summary does not provide links to all of the resources that I discuss. That’s a shame, as I have collected some things that I believe you will find helpful. So, after I sign off you will find the Summary in full. Feel free to click on any of the links and download any of the resources. I hope that you will be blessed as you discover more about dementia and about caring. In turn, may it help you to bless others!

Be blessed, to bless,

With joy,

Signature to use

“Discussing Dementia 2: On Caring” – Online Summary

A. Introduction & Blessed are they

B. “Discussing Dementia 1: An Overview” – Recap

See separate Handout:

2018.05.04-05 Discussing Dementia 2 – Tamworth – Talk Summary – B. Recap

C. On Caring

C.1     Who is the most important person? The person living with dementia or their carer?

          The carer!  “You can’t pour from an empty cup”.

C.2     We will explore:

  • How do we best care for persons living with dementia (PLWD*)?
  • How do carers best care for themselves?
  • How do we helpfully care for the carers?

C.3     Terminology: Dementia Australia “Dementia Language Guidelines”.

https://www.dementia.org.au/resources/dementia-language-guidelines.

C.4     Story: Why continue to visit your wife living with dementia?

Because I still know who she is!

C4. I still remember who she is

C.5     A Carer’s story.


D. Organisations and Individuals

D.1    Dementia Australia: www.dementia.org.au.

a) Doing Stuff Together: Handout and Video.

2018.05.04-05 Discussing Dementia 2 – Tamworth – D.1 Doing stuff together

b) Website.

c) Dementia Daily (https://www.dementiadaily.org.au/)

e.g. Imelda Gilmore: “Someone to come alongside” 19.4.2018.

2018.03.14 Carer Imelda Gilmore

d) HELP Sheets. See the website.

e) Dementia-Friendly Communities: dementiafriendly.org.au.

D.2    Carers Australia

  • Website: carersaustralia.com.au.
  • An article: Carers flag respite shortage, Australian Ageing Agenda Apr-May 2018:

AAG p.8 Carers flag respite shortage

D.3    Carer Gateway (Federal Government)

D.4    Kate Swaffer

  • Reader’s Digest article (February 2017): Life beyond dementia.

Readers Digest – 2017.02 – Dementia

  • Book: “What the hell happened to my brain?”
  • Sheet: “20 things not to say or do”.

Swaffer – 20 things not to say or do

D.5    Christine Bryden

  • Before I forget: Christine Bryden’s struggle with early-onset dementia 22/12/2015: ‘The Doctor said, “You’ve got about five years until you are demented, and then another until you die.”’ ‘It was,’ Bryden says, ‘just unbelievably cruel.’

Before I forget_ Christine Bryden

  • Books:
    • Who will I be before I die?
    • Dancing with dementia
    • Will I still be me?
    • “Nothing about us, without us! 20 years of dementia advocacy”

 

E. The five griefs of dementia

Grief is a natural (God-given) response to loss and death.

The 5 griefs of dementia:

  1. When the person’s symptoms first begin.
  2. When the person is first diagnosed with dementia.
  3. When the person enters residential care.
  4. When the person is dying and dies.
  5. When the carer loses their role as carer.

Story: “Her heart remembered” by Lynne Walter Budnik.

2016.08.30 Her heart remembered

F. Film: “10 Glorious seconds”

See http://www.tengloriousseconds.com

G. Where is God in dementia?

G.1    Parable of the Good Samaritan (Luke 10:25-37) – Rephrased by me.

 G.2    Jesus’ Great Commandments

Jesus’ two great Commandments: “Love the Lord your God with all your heart, mind, soul and strength. Love your neighbour as yourself”. Explanation: Heart = body. Mind = brain. Soul = Spirit. So we are Body + Brain + Spirit.

 G.3    The breath of life

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).

 G.4    Spiritual renewal

Our God-given spirit does NOT suffer from ageing or dementia. It remains whole, well and strong. “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day” (2 Cor. 4:16).

G.5    Spiritual Glory: Charles Wesley’s hymn “Love divine, all loves excelling

(verse 3): changed from glory into glory!

 G.6    Psalm 139: Our Daily Bread 22/10/2014.

Our Daily Bread 2014.10.22 – Dementia & Ps 139

 G.7    Dementia-Friendly Worship

  • Book of Common Prayer article (9/10/2016)

Book of Common Prayer and dementia

  • “Meaningful Ageing”: Dementia-Specific Christian Worship Service Handbook

https://meaningfulageing.org.au.

G.8    John Swinton

  • Paper: “Gentle Discipleship.

2016.07.11 John Swinton – Gentle Discipleship

  • Book: “Dementia – Living in the Memories of God”

G.9    Hammond Care: Faith for Life

G.10  Teepa Snow and Lin Possell

  • http://teepasnow.com/
  • The gift of those living with dementia: they live in the present moment!
  • Book: “Dementia Guide for Faith Communities and Leaders”. Excerpt: “I am living with dementia” pp.69-70.

I am living with dementia pp.69-70

  • Videos e.g. Spirituality in Dementia Care.

G.11  A Carer’s Story #2

H. Dementia and Technology

H.1    Is there an App for that?

  • BPSD / Care4Dementia / Cultura / The Dementia Friendly Home / Google Earth / Photo Booth / Sound Hound / YouTube / amuseIT
  • My compilation: Is there an App for that? (See an earlier entry in this Blog).

H.2    EDIE (Educational Dementia Immersive  Experience)

https://www.dementia.org.au/learning/centre-for-dementia-learning/edie-educational-dementia-immersive-experience.

H.3    Centre for Cultural Diversity and Ageing

Centre for Cultural Diversity and Ageing 

H.4    My Aged Care (Federal Government): https://www.myagedcare.gov.au/

I. TIPS

I.1      Sense of humour: Keep a sense of humour! “Don’t take yourself too seriously!”

I.2      Respite

  • Respite is a form of self-care. The dementia journey is a marathon.
  • “Respite care can support you and your carer with a break for a short period of time. This gives carers the chance to get to everyday activities or go on a planned break. Respite care may be given informally by family, friends or neighbours, or by formal respite care services” (myagedcare).
  • Give your children the opportunity to care!
  • Search the Dementia Australia & My Aged Care websites.

I.3      Driving

I.4      UTAS: https://mooc.utas.edu.au/courses

  • Understanding Dementia Massive Open Online Course (MOOC)
  • Preventing Dementia MOOC
  • Bachelor of Dementia Care

I.5      Risk Factors for Dementia

  • The Lancet (Dec. 2017) – Can dementia be prevented? See Blog: “On Caring 2”.
  • Alzheimer’s Research UK – Reducing your risk of dementia. See the site

https://www.alzheimersresearchuk.org/about-dementia/helpful-information/reducing-the-risk/.

J. Resources

J.1     Project We Forgot (21.4.2018) – Living the long goodbye with my grandpa and dementia. See https://projectweforgot.com/your-aid/country/canada/living-the-long-goodbye-with-my-grandpa-and-dementia/.

Project We Forget 2018.04.21 – Living the long goodbye with my grandpa

J.2     Films e.g. Still Alice / The Iron Lady / The Notebook

J.3     TV: Mother & Son

J.4     Radio e.g. ABC “All in the mind”. http://www.abc.net.au/radionational/programs/allinthemind/

J.5     Printed material

  • Caregiver’s 10 Commandments.

caregivers 10 commandments

caregivers 10 commandments

  • Answering the same questions over and over

Answering the same questions

  • Caring for a Dad with dementia, blindness and hearing loss

Caring for a dad with dementia blindness and hearing loss

  • Early signs and symptoms of Alzheimer’s

Early Signs and Symptoms of Alzheimer

  • What to do if you think that a loved one has dementia

What to do if you think that a loved one has dementia

J.6     Young Onset Dementia

  • Book by Hilda Hayo and others: “Young Onset Dementia: A Guide to Recognition,
    • Diagnosis, and Supporting Individuals with Dementia and their Families”.
  • Table of Contents: Chapter 5: The Impact … on Family Relationships.
  • https://www.jkp.com/uk/young-onset-dementia-2.html

J.7     Sally Magnusson

  • Book: “where memories go”.

K. Final Questions and Answers

L. Conclusion

  • “God still remembers me” by Paul Hornback.

http://www.faithfulfoggyliving.com/new-devotional-book/

The END!

 

14. Ageing well: Living life more abundantly – 2

Jesus says: “You shall have life and live it more abundantly” (John 10:10).

One of the teachers of the law came and [asked Jesus], “Of all the commandments, which is the most important?” “The most important one,” answered Jesus, “is this: ‘Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbour as yourself.’ There is no commandment greater than these.” (Mark 12:28ff.)

Getting better with age

As I said in my previous post, on Saturday night 21st April I had the privilege of being the guest speaker at Hornsby Uniting Church’s dinner. I chose to speak on the topic: “Ageing well: Living life more abundantly”. This is a direct quote from Jesus.

But how can we age well? How can we live life more abundantly? Is there anything we can do to prevent dementia?

There are a number of modifiable risk factors for dementia that experts believe can reduce our risk of having dementia by 35%. What are they?

On 1st August 2017 Kirsty Marais, Communications Manager at Alzheimer’s Research UK, produced a wonderful article entitled “Behind the headlines: can one in three dementia cases be prevented?” You can read her article by clicking on the following link:

2017.08.01 Lancet – Can dementia be prevented

She basically put into plain English the Lancet Commission (Lancet Medical School) December 16, 2017 journal article “Dementia prevention, intervention, and care”.

The Lancet Vol 390 No 10113 Dementia prevention, intervention and care

In summary, 65% of the risk for dementia comes from those things that we are unable to change e.g. our age, gender, genetics. However, there are things that we can change: modifiable risk factors. The Lancet Commission report identifies nine of them and groups them according to life stages: Birth, Early Life, Midlife, Late Life. They also assign percentages to each of the nine modifiable risk factors – totalling 35%.

The Lancet Commission picture looks like this:

Lancet-dementia-Picture1

However, that’s a bit technical. I therefore reworked it:

The Lancet model redrawn - JPEG

You can print this out by clicking on the following link: The Lancet model redrawn

The top three modifiable risk factors are:

  1. Midlife Hearing loss (9%). Because the person’s brain is not stimulated, they may isolate themselves, they may do little exercise, and their diet may suffer. Researchers suggest two theories: that the extra mental effort necessary to cope with hearing loss cause the brain to be less resilient, and/or something is happening biologically that affects both hearing loss and dementia. We do know that managing hearing loss does improve a person’s Quality of Life!
  2. Early Life Low education (8%). Education builds connections between neurons (nerve cells) in the brain – from birth to death! It’s never too late! The more connections you build up in early life the better! The more you have, the more you can lose in later life i.e. before dementia symptoms occur.
  3. Late Life Smoking (5%): The effects of smoking usually arise in later life, though smoking from any age should naturally be avoided.

Kirsty Marais helpfully reminds us that if we avoid all of the nine risk factors we might still develop dementia – but you can at least try and reduce your risk NOW!

So, one way we can “Age well” and “Live life more abundantly” is to take seriously the modifiable Risk Factors for dementia. Why not start TODAY?!

With blessings,

Signature to use

 

 

13. Ageing well: Living life more abundantly

Jesus says: “You shall have life and live it more abundantly” (John 10:10).

One of the teachers of the law came and [asked Jesus], “Of all the commandments, which is the most important?” “The most important one,” answered Jesus, “is this: ‘Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbour as yourself.’ There is no commandment greater than these.” (Mark 12:28ff.)

Blog 12 - Better with age

On Saturday night 21st April I had the privilege of being the guest speaker at Hornsby Uniting Church’s dinner. I chose to speak on the topic: “Ageing well: Living life more abundantly”. This is a direct quote from Jesus.

But how can we age well? How can we live life more abundantly? Is there anything we can do to prevent dementia?

Commandments

Jesus’ answers the first two questions, and the third logically follows. When Jesus is asked to sum up the whole law, He says: “Love the LORD your God with all your heart, mind, soul and strength, and love your neighbour as you love yourself”.

How can we age well? How can we live life more abundantly? By living out these two Great Commandments!  Because they sum up our whole life:

Love the Lord your God with all:

Your heart                      Physical

Your Soul                       Spiritual and Emotional

Your mind                      Intellectual

Your Strength                The strength of all 3

&

Love your neighbour     Social and Service

as you love yourself      Honour yourself (Self-care).

John 10 v10

How can we age well? How can we live life more abundantly? By living out these two Great Commandments! We need to look after our Physical, Spiritual, Emotional and Intellectual health. We need to keep Social and engage in meaningful Service. We need to Honour Ourselves.  In future posts I’ll look at those seven items. Stay tuned!

Regardless of whether we’re young, or young at heart, ageing well NOW has a great effect on the last part of your life.

As an Aged Care Chaplain my passion is Dementia. I am privileged to teach people in different Churches about dementia through Discussing Dementia. I am currently doing the Bachelor of Dementia Care degree through the University of Tasmania. I also try and keep up-to-date with the latest dementia news.

You may not know that dementia is the 2nd leading cause of death in Australia, and the leading cause for women! Dementia is incurable and fatal, but it’s not inevitable and it can be delayed.

There are a number of Risk Factors for dementia that experts believe can reduce our risk of having dementia by 35%. What are they? You’ll have to wait for my next blog post to find out!

Honour Yourself.png

 

 

 

 

 

 

Honour God

In the meantime, keep the Commandments! Age well. Live life more abundantly. Honour God, honour your neighbour, and don’t forget to honour yourself.

With blessings,

Signature to use

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,

Signature to use