from the Editor….

Vol. 7 Issue 1 July 2011

Greetings! A few articles in this issue are concerned with dementia care. This is an issue of growing consideration across our communities, for the older we are now living the more many of us will live long enough to acquire some form of this disability. It’s a disability that inexorably and sadly erodes one’s cognitive capacity, eating away at memories, as well as the ready recognition of loved ones. Our society places far too much value on equating human worth with cognitive capacity and intellectual achievement. The result is that those whose minds are ceasing to function so well can be regarded as of lesser worth. But faith and true human regard tell us that all people are created as people of worth regardless of achievement, or physical or intellectual capacity. Wherever we can may we bring dignity to the lives of our neighbours by reaching out and caring for them regardless of their capacities. It is how God regards us. Feel free to share this newsletter with your friends. If you don’t already, let me know if you would prefer to receive this by email. Email me (address above) with the names of anyone who would like to be added to the mailing list. Your feedback is always welcome.

Enjoy the read.

Rev Trevor Whitney Disabilities Ministry Chaplain

UCA, Presbytery & Synod of SA

Pastoral Relations

email: twhitney@sa.uca.org.au

Index

From the Editor ................ 1

Story ................ 1

Resource Website ................ 1

Dementia Care ............... 2

Friends for Life ............... 3

Reviews ............... 3

Disability Blog Spot ............ 4

Kid’s Books ............... 4

Luke 14 Launch ............... 4

Life at a slower pace - Sarah’s story

One day, soon after I commenced an interim chaplaincy at what was then called Julia Farr Services, I was asked by a nurse if I wouldn’t mind tak-ing wheelchair bound Sarah for a stroll around the neighbourhood. Sarah, though very limited in vocal capacity, had been indicating that she wanted a breath of fresh air. Though busy enough that morning I agreed. With a warm blanket tucked in around her waste and legs to keep the cool autumn air at bay we ventured into the tree-lined neighbouring streets. Sarah, a middle-aged lady who had lived at this institution for several years, immediately showed signs of relishing this brief respite from the monotony of her daily routine. The bumpy footpath compelled me to push Sarah slowly so as not to bounce her around. We soon came to a house with a neat wrought iron fence. Sarah moaned a little, indicating she wanted to stop. I wasn’t sure why we were stopping but soon noticed Sarah observing two magpies playing in the front garden. A slight smile verified her pleasure. We slowly moved on. Soon after Sarah quietly moaned again. I looked around but could see nothing of peculiar interest, until I heard the sounds of other birds of unidenti-fiable definition making twittering sounds in the overhanging tree. Sarah seemed content to just pause and listen as neighbourhood cars passed by. And so our journey of several pauses, observations and listenings continued until we eventually found our way back to Julia Farr where it was almost time for lunch. A trip that would have taken me at my normal, brisk walking speed about 10 minutes had taken nearly an hour to complete. But it was a trip that relaxed me, that engaged my senses more than usual, that revealed to me the beauty of nature in ways I don’t always see because I’m too busy living life at a quick pace. Thank-you Sarah. You showed me what I couldn’t see for myself.

Be still and know that I am God.

Uniting Church in Australia

Disability Resource Website

www.presbyterysynod.sa.uca.org.a

u/disability-ministry

This UCA site offers disability

resources such as Reviews, Disability

News newsletter (back copies), Kid’s

Books, Ministry items, Liturgy,

Prayers, Poems and Stories.

For church & personal use.

Dementia Care

Caring for the caregiver

A caregiver may feel angry and guilty that they can’t seem to do more to care for their loved one. Finding a suitable quiet place, for prayer, reflection and recol-lection can be helpful resources in restoring friend-ship with oneself.

Coming home from caregiving to the demands of a home may provide little release from the stresses of caregiving. Going for a walk with a caregiver who is a loved one may provide a circuit break from these de-mands. The physicality of gardening is another op-tion. The emotional release found in beautiful musical can be helpful .

A caregiver may need to talk to someone who’s a good listener - a wise friend, a counsellor, a minister - someone who’s outside the immediacy of your situa-tion. Someone you trust. They can offer a balanced perspective, and help clarify the situation.

Caregivers may need to talk to trusted people about many different stressful issues such as loss of sexual relationship, loss of recognition by the person with dementia for the caregiver.

The offering of some type of ritual to help the care-giver hand over the responsibility of total physical care to others and to find new ways of demonstrating love.

Where appropriate, a hug may help. Practical help may be valued, such as making a meal. If the caregiver is a person of faith they may value

someone who will pray them. Others may value knowing that others in their church are praying for them.

Much of the material on this page has been sourced from, Eileen Shamy (2003)

A Guide to the Spiritual Dimension of Care for People with Alzheimer's Disease and Related Dementia:

More than Body, Brain and Breath, Reproduced with kind permission of

Jessica Kingsley Publishers, London and Philadelphia.

Pastoral care with those who live with dementia invites the carer to consider a form of care that, of necessity, invites the dis-covery of personal pastoral abilities beyond the cerebral. For some it may be a challenge especially if we knew what it was like to relate to our loved one prior to them acquiring their disability. Below are some helpful hints on how to care. Also, there are some guides for caring for the caregiving, for such caring, amidst its rewards, can be very demanding.

Caring for someone with dementia

Memory can be fostered through the sensitive use of smell, colour, music, pictures, texture, and so on.

Feelings: people with dementia continue to respond to feel-ings long after they are no longer able to understand.

A smile communicates beyond words and memory. Be clear in your declarations. “I am Joan. I am your wife. I

have come to visit you. I love you.” Use simple sentences. Speak slowly and clearly. Wait for a response. People with dementia need time to frame

an answer. Avoid asking questions. Use self-included humour. Learn not to fear silence. Use non-verbal modes of communication - touch, gesture. Try to maintain eye contact. Walk with the person or the wheelchair. Tell the person if you do not understand what they are saying.

Don’t be afraid to ask the person to repeat what they have said.

Assume that the other person still has the capacity for insight. Take something with you that may be a memory cue - a

photo, a favourite song, something they once made. It may cue a memory.

Loud noise can be distressing for some. Keep your visit short. Visit regularly, if possible on the same day of the week and

same time - a regular routine promotes orientation and secu-rity.

Indicate that you will be back and make sure you keep your word.

“I am Joan.

I am your wife.

I have come to visit you.

I love you.”

A Guide to the Spiritual Dimension of Care, p.221

Publisher: Mowbray

London & New York, 2010

Available online from The Book Depository for $15.80

- no shipping costs

- prices may vary elsewhere

Disability topic: dementia & spirituality

Whilst disability is often discussed as regards to its eco-nomic and emotional effects it is rarely discussed for its spiritual implications. This book invites us to understand that even people with severe levels of dementia can still share in communication, have spiritual longings, and can, with imagination, be related to as spiritual persons. In an age when more and more people are living longer the issue of ensuring holistic quality of life for those who develop de-

mentia comes into sharper focus. A very thought-provoking and readable book.

HENLEY

FRIENDS

FOR LIFE

ACCESS BIBLE STUDY Living Life With

Courage and Grace

WHO WE ARE

Henley Friends for Life is a social support group for people with disabilities, their families, carers and friends. We meet on the first Saturday of every month at Henley Fulham Uniting Church, Temple Worship Centre 214 Military Road, Henley Beach. OUR BACKGROUND Several years ago a number of passionate Christians, including myself, met on a six weekly basis to pray for people with disabilities, the difficulties and isolation they face, and the need for ministry to them. Since then we’ve seen the commencement of Carers Week and the increased involvement of schools, youth groups and other voluntary organi-sations with people with disabilities. It seems that our prayers and networking with people in the disability area has lead the way to help people get involved in caring for others. THE BEGINNING OF FRIENDS

The beginning of our Friends for Life group was a risk that Henley Fulham Uniting Church took on 18 months ago. The response from the congregation has been positive and momentum is growing and we are evolving and learning every month. This group brings much to our church life. Our Friends for Life group shows acceptance, endurance, persis-tence, joy and love to all people. This life “experience” cannot be taught from a pulpit. Iit needs to be lived out in practi-cal ways. To me this is truly church in action, perhaps not in the conventional way but it is something that the wider community can witness, question and embrace. We share a simple meal pre-pared by the ladies of the church, and enjoy dancing to the music from our mu-sic band or DJ. On a couple of occasions we have had games nights and recently we had a bus trip and barbecue to the Hahndorf Farm Barn. In May 2011 we celebrated our first birthday. Our aver-age attendance is about 70 people and

new people are joining every month.

Eleanor Parkes Coordinator, Henley Friends for Life

James Woodward

This 6 part study series invites us into the lives of those who live with disabilities. Through the telling of first-hand stories we are given honest insights into what it is like to live in our communities with a disability. We are also given a glimpse into the world of those who offer care to these people, both family members and community service deliverers with the church.

This study series challenges us to consider the right of people with disabilities

pastor

al

ministry

Between Remembering and Forgetting

The Spiritual Dimensions of Dementia

Rev Sue Scot

Publisher: UnitingCare NSW.ACT

to live authentic lives in the wider community and the church. The study topics are: 1. Finding Courage 4. Healing and Hope 2. Sharing insight 5. Courageous and Gracious 3. Perseverance 6. Courage and Grace for the Journey To purchase, contact:UnitingCare NSW.ACT: Communication Coordinator on 8267 4358

DVD costs $10 + postage and handling ($3) including GST.

Spare copy available for loan from the editor.

Further info, and study series material, available at:

h t tp: / /unit ingcarenswact .org.au/resources/theological_ref lect ions l iv -

ing_life_with_courage_and_grace

DVD small group study

Luke 14

Launch

Luke 14 is a new, ecumenical study programme designed to assist churches to be more inclusive of people with disabilities who live in their local communities. Following interstate launches it was launched in Adelaide at Adelaide West Unit-ing Church on Thursday April 14th. Speakers included Jim Stallard and Lorna Hallahan. Michelle Thredgold sung a couple of beautiful songs. Janine Lenigas from Amandus spoke of plans to develop the programme across the Lutheran Church. Afterwards there was opportunity for people to network across the various disability services and ministries represented at the gathering. At present an ecumenical group has started meeting with a view to promoting the programme across various denominations. If interested in more info and re-sources contact the editor. More news later.

Disability Blog Spot

The warmth of a hug, or the smell of familiar flowers, may communicate loving care long after words are no longer un-derstood, nor faces recog-nized.

What’s Happening to

Grandpa?

Maria Shriver

There are countless blog sites aimed at people with disabilities. They range from the educational, to the personal, from the fun, to the outra-geous. Here are a few that provide a glimpse into the world of disability.

Chocolate Cherry Pie http://chocolatecherrypie.wordpress.com/

A parent's blog about life with their two kids, one of whom is deaf-blind and has severe disabilities and medical issues. It describes the relation-ship between the kids, and raises awareness of various disability issues.

Can-do-ability http://www.candoability.com.au/

Written by “Jo-Blogs”, a young, female wheelchair user, this site provides information on a wide range of disability resources, national and interna-tional news items, as well as local events. Though the events have a bias towards NSW, there is still plenty of interesting information for all.

Daniela’s Journey to Independence http://www.danielasjourney.blogspot.com/

Daniela is an American student on the way from high school to college. She talks about the skills she needs to learn in order to become an inde-pendent adult, as well as the issues faced that are unique to teenagers. Very helpful for teens with disabilities and their parents.

Grit Media on Facebook Facebook.com/pages/GRIT-MEDIA/126495861313

Grit Media is the production company behind the TV show, „No Limits,‟ and the radio program „The Boldness.‟ Their motto is „Shamelessly Dis-abled,‟ and their output reflects that title. Their Facebook page enables you to contact fans and to keep informed of Grit Media productions. You can also find lists of disability-related blogs from the following sites: Networked Blogs networkedblogs.com/topic/disability E-Ability e-bility.com/links/blogs.php Hopeful Parents hopefulparents.org/blog-directory The Ragged Edge raggededgemagazine.com/blogindex.html

For more info see Link disability magazine, August 2010

Young Kate loves to spend time

with her Grandpa, but she begins to

notice that he keeps telling the same

stories, and forgets her name. After

talking with her Mum she decides to

create a photo album of favourite

shared memories to help the two of

them cope with his progressing Alzeim-

ers Disease.

A helpful book for enabling young

children come to terms with a family

member who is living with dementia.

Publisher: Little

Brown & Co.

$6.20 hardcover

Ages: 6-10

Disability topics:

Alzeimers Disease

dementia