Tag Archives: spiritual care

Faith, hope and dementia: ‘Why did God give me Dementia?’

Lucy Frost Guest Blogs about #Dementia

Lucy Frost, Guest Blogger, speaks about #Dementia and Spirituality

Sometimes I invite guest bloggers, from other specialities, to post on the Blog. The only trouble is that they do it so much better than me. Lucy Frost and Peter Wells are no exception. In a thought provoking, inspiring and moving blog they help us to think about spiritual care. And if you want any more stories by Lucy you can visit her blog at http://t.co/7hkpKRG4x5.

Read on….

A Strategy for equality and diversity? Tick. Meeting of ‘Spiritual need’? Tick. Of course, we seek to holistically meet the needs of those we care for. It’s a tough ask in a very busy hospital. What is spiritual need anyway? Ah, of course, it’s the essence of who we are. Sharon Janis in Spirituality for Dummies helpfully talks of the great divine light that shines in us all. Of course, the word ‘spirit’ can be whatever gives ‘meaning’ as an individual.

I can tell you plenty of stories of clumsy attempts to meet spiritual need, but you’ve probably heard them before. You know, the wheeling across to the chapel on a Sunday a handful of patients, fit enough to make the trip. Probably because *Mrs Jones daughter said mum went to church once in 1953. The setting up of a table in a corner with a selection panpipe CD’s and a sign saying ‘Spiritual Space’ (Yes – I have actually seen this). Easy to feel disheartened then.
So it feels quite hard to meaningfully give spiritual care for a person with dementia: How can we bring comfort to those we care for? A quick fire search of ‘religion and dementia’ finds articles and web sites lauding the ‘comfort’ faith can bring. This is surely true if the opportunity to embrace one’s own faith is given truly and holistically.

A divine light? Spirituality for Dummies can’t surely have it nailed so simply? Is that really what exists within us? That can’t surely be the definition of what lies within ourselves? So many questions, and not really a right or wrong answer.

So, how do we, as nurses, doctors, health care staff, reach out to that light and meaning that’s there inside all of the people we care for? Of course!! We call the hospital chaplain/ Imam / faith leader, because he/she will have all the answers. Alas they are not always available instantly. Trouble is, for those of us who help people with dementia – they often are living for the moment. ‘Sorry, could you just wait while I contact the hospital chaplain now I’ve assessed your spiritual need’ – It’s just not going to cut it.

‘Why did God give me dementia?’ This is a question I was faced with not so very long ago. A person with a recent diagnosis of alzheimer’s disease asked me this. This person had a strong Christian faith. They said: ‘I must have done something really bad for this to happen’. Patricia Higgins, writing in the Catholic Medical Quarterly, reminds us of the need not to confuse spirituality as being the same as religion. A common mistake it seems.

So, what did I say to this person who asked me possibly the very hardest question I have ever had to answer? To be honest, its times like this, when you could use an hour or two to think about the right answer. Well, I didn’t have two hours – I had that one precious moment to help this person in their time of need. I said ‘I don’t know. I don’t think it was God that gave it to you, it seems like it’s your body that has given you dementia. Maybe your faith in God will give you the strength to live with dementia’ ‘I hope so’ was the reply.

Hope! I realised that in hope lies a possible answer to this conundrum. What always amazes me, and inspires me is this: The people with dementia I am so privileged to help, still have hope. They have lots of hopes. Yes: People with dementia have hopes, fears, dreams and aspirations as we all do. Why shouldn’t they?

A hospital is where people come in a time of crisis. I see a lot of people living with dementia, for who life is throwing a lot of challenges their way. For this person, their reply of ‘I hope so’, came with a smile. As we held hands – I felt I had helped to connect them with their feelings of hope. Hope through faith in this person’s case. Wow: What a moment. What an utter privilege for me as a nurse.

A person with dementia might be hoping they will not need to move to a care home, they may hope friends will still visit, still care even. They may hope for their physical health to remain robust. The point is, there does always seem to be something to hope for. We must help the people we care for reach for that hope. Maybe that comes from ‘recognising that light within’, but it definitely comes from seeing the person and not the illness.

Faith might be religious, it might be a faith in a way of living, it might be a faith in one’s own beliefs and values. It’s deeply personal and unique to each human being. Dementia can tap away at your cognition, it can take away your physical ability to do many many things. Dementia can’t touch that light within. It can’t erase feelings.

We often talk of inspiring and amazing people. Well here is someone who really does fit that billing. Christine Bryden, a lady living with dementia, has written about spirituality in her book ‘Dancing with dementia’. It’s a bold statement, but I agree with her. “Dementia cannot touch your very soul, existing at the heart of many layers of self. If we, in our efforts to reach out to a person with dementia remember this, and we see inside beyond the disease: then there can indeed be ‘Faith, hope and dementia’.”

Lucy Frost: Dementia Champion and Nurse Specialist, Brighton and Sussex University Hospitals NHS Trust.
Reverend Peter Wells: Lead Chaplain, Brighton and Sussex University Hospitals NHS Trust kindly proof read and assisted the author with this blog.

Sharing the Cloak: a Chaplaincy Volunteer speaks about her role

crucifix

Sue Meredith is a chaplaincy volunteer. She comes in every week to visit patient and one regular Sundays to distribute Holy Communion. Here she speaks movingly of one encounter where she made a difference. Spiritual care at its finest. Oh and the word chaplain is derived from cloak- and the sharing of a cloak in the cold brings great comfort!

At Mid-day, on Sunday, 19th May 2013, the Special Day of Pentecost ~
( for those of you who’ve never heard of Pentecost, take a glimpse at the following light-hearted article on the following website )
http://www.huffingtonpost.com/jack-levison/after-the-jelly-beans-are-all-gone-comes-pentecost_b_3294387.html

~ in beautiful sunshine, I left Worcestershire Royal Hospital with an immense sense of inner peace, something very difficult to describe in real terms, especially when my tour of duty as a Volunteer Chaplain had finished after leaving the bedside of a poorly gentleman who had been overcome whilst he outpoured heart-breaking news of a family trauma, a tragic situation independent of his own medical condition.

We shared Holy Communion as I knelt on the floor by his bedside. No great public act of falling to my knees, simply a means of my being at the same height where the gentleman lay.
In place of the altar in a church building, a small, disposable, soft white tissue placed on the gentleman’s bed. Imprinted on the border of the tissue a lovely, sunny scene was depicted.

On top of this simple, disposable tissue ( which I used for a very practical reason in the name of infection control ), was placed a beautiful , small, contemporary style silver & gold crucifix : a personal gift to me by a dear friend who is not remotely religious, nor a churchgoer, nor connected in any way to any particular formal faith. Yet her love of giving to others in all she’s suffered and endured during the last two years, has been absolutely incredible in her successful battle against cancer at Worcestershire Royal Hospital. My friend’s courage, brightness & sense of humour radiates like sunshine ; and it’s her beautiful gift to me that is now bringing brightness and uplifting to others. Everyone who sees this beautiful little item admires it.

Sharing the ambience of a short, bedside Communion Service full of hope and re-assurance, with that wonderful gentleman on Sunday morning, from the window of his hospital side room , a glimpse of sky could be seen. Beautiful, bright blue intercepted by stunning white clouds amidst sunshine of a lovely May Spring Day, all unexpectedly endorsing the lovely scene on the tissue.

Without pre-planning or pre-determining any agenda before arriving at the hospital, I had no idea that I would visit this gentleman. Yet something had stirred in my heart to place a hand-made card in my bag before leaving home.

The card incorporated my own photo of a gorgeous beach on the tiny island of Eriskay in the Outer Hebrides with turquoise seas, bright blue sky, lovely, white clouds and silver sand … in part mirroring that stunning skyscape from the window in the gentleman’s hospital room, the skyscape which I pointed out to him as he lay in his bed ; and which brought him a new focus and a smile.

Words on the card quoted “The Prayer of St. Francis of Assisi”. It was indeed an intensely emotional moment as we both shared the photocard, speaking words of the prayer together. In the gentleman’s devastation of his family’s tragic circumstances, his voice faltered as tears flowed; and then tears filled my own eyes. Yet, in that sincere emotion, a calm and beauty beyond one’s comprehension filled the room as brightness broke through, echoing some of the words
“…. … where there is despair, HOPE.”

I offered for the gentleman to keep the bedside Communion Service sheet, together with the white tissue and photo card which he very kindly accepted. Inexpensive, humble items to focus on during his overwhelmingly difficult time.

He apologised to me for crying. I gently nudged his forearm and assured him that in his honesty to cry, there was no need for an apology because tears were a release button. I confirmed it was an honour to meet him ; and as I spoke, I began to stand up ready to take my leave, struggling every inch of the way to fight back my own tears. This kindly, and very courageous gentleman, accepted my offer to share with him comforting words in “The Grace” before I thanked him for receiving me. Then I thanked the staff at the Nurses Station on the ward for welcoming me and directing me to his room before departing to travel home to my own family.

As a Volunteer Chaplain, to witness the gentleman’s uplifting whilst, in return, receiving his genuine appreciation & gratitude of my visit, in all that he’s enduring, was better than gold-dust: absolutely priceless.

Chaplains are people who are happy to simply “share the cloak”. We can’t possibly put ourselves into another’s shoes. Each life is unique and different ~ everyone travels along an individual road. Yet, together we’re all stronger in sharing & caring.

I’m nothing special, merely an ordinary person with a longing: to be a presence in supporting the vital, professional work of doctors, nurses and associated colleagues.

That’s why being a Volunteer Hospital Chaplain is so precious in my own journey. It’s where I love to be: meeting people unexpectedly, wherever they are, whatever they believe, whatever their circumstances. Simply being there with them for a while.

My voluntary role comes under the directive of Rev. Dr. David Southall, author of this blog, so
if my experience stirs something in your own heart today, why not write to David, telephone him or even knock on his office door at the hospital? I do know he’d be delighted to meet you.
eriskay