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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.

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SO INSPIRATIONAL THAT I GOT THE WRONG TRAIN HOME: #IND2014

Ooops...Wrong Train Home!

Ooops…Wrong Train Home!


Today is International Nurses Day 2014, so here is my tribute to all the dedicated nurses, past, present and future.

It had been an exhilarating and inspirational day. So at Paddington station I took stock of what I had experienced.

Then, with my train being called, I rushed with the crowd, got on the train, found a seat, closed my eyes and promptly fell asleep hoping to wake up in my destination: Worcester. I woke to the voice: “The next station will be Didcot.” Funny, I thought, but we did come through Oxford on the way down so it’s close enough!” After dozing again the voice from the intercom said “The next station is Swindon!”

I knew that this meant TROUBLE.

The woman at the refreshment bar gave me the clue with her Welsh accent and words (with a kind of shrug that confirmed I was an idiot) and told me I was heading across the border to Swansea.

Suffice to say all ended well and I got home with help, just catching the last train of the night from Bristol to Worcester Shrub Hill by the skin of my teeth.

But what inspiration event had caused this mishap?

Well I was coming home from London having been at the Student Nursing Times Awards as a guest of my friends at NHS Employers.

And it was INSPIRATIONAL

Nominee after nominee shone with enthusiasm, energy, creativity and passion.

In a former life many years ago, I myself had been a young student RMN; and I felt a surge of joy to see the pony-tailed male winner go and collect his award (remembering that I had long hair once!)

And then there were the Caremakers! People who had signed up as trailblazers for the 6C’s: Care, Compassion, Competence, Communication, Courage and Commitment. Each one a winner in their own right.

Any my favourite of all, Emily Gartshore, winning Student Nurse of the Year, and posing for a ‘selfie’ on the stage with the great and the good.

I felt so proud to have once shared in the profession of nursing

I knew that the future of nursing was in good hands with these students at the vanguard

And I was inspired again at the compassion, care, courage, commitment, competence and communication which was modelled by these nurses.

Almost worth nearly spending a night in Swansea!

So Happy International Nurses Day 2014!

A Woman’s Courage: Patient’s Teach Lessons about the 6C’s Too!

Courage comes in many guises

Courage comes in many guises


Courage comes in many guises. Immediately one thinks of the courage of our armed services in the theatre of battle. Or indeed the courage of those who face victimisation or oppression because of what they believe. In fact, in nursing at the moment, COURAGE is one of the 6C’s which combine to make outstanding care. But it’s easy to miss the attributes and virtues that relatives bring into our hospitals and which are inspirational.

Recently,I have seen COURAGE face to face in my Hospital.

So I was called to a ward and walked into the dimly lit side room and in the gloom made out two figures. A poorly and frail man in the hospital bed, and a woman sitting at his side holding his hand. She was his wife of 40 years, had been his carer for the last decade due to a stroke; and now, when his time was drawing near to leave this earth, was there at his side.

For hours on end, day after day, she would sit with him. When he slept, she rested. When he woke, she reassured him- bringing comfort and peace that no one else could.

And as we chatted, she told me about their life together: of the dogs and holidays; the good times and the bad; and all of it was infused with pragmatism and love. I visited that room a number of times; each time she was there doing what she could, not because it was expected, but because it was the right thing for them.

Now to have an illness yourself is often bearable. But to watch someone you love and are linked to go through something is, well at times, agonising. I did my best for this lady and man. I made her cups of tea; purloined some biscuits; gave her time to tell her story. But I couldn’t walk her journey; merely tread a few steps with her along the way.
She was, I believe, with him when he passed away; but if not- then he still would have known of the love which surrounded him.

We can learn a lot from books; a lot from colleagues; a lot from the internet.
But for me, if I want to know what courage is, I need look no further than this woman.

Now that’s courage.

Treading in the Footsteps of Others: A Chaplain’s Compassion

Others will follow your footsteps easier than they will your advice.

Others will follow your footsteps easier than they will your advice.

I used to play a game on the beach with my daughter when she was younger.
I would walk along the shoreline, barefooted in the wet sand, and she would follow me, trying her best to walk in my footprints and not leave a mark of her own.

It’s easy to think that we are IT isn’t it? Well it is for me at least!
The fact that we are here NOW is obvious. But many have trodden these paths before us, doing the job that we do, making a difference.
We really do stand on the shoulders of giants.

This was brought home to me by a recent email from a retired Chaplain who was a perdecessor of mine: Canon Lisle Ryder.

Lisle had seen mention of my blog somewhere and wrote to express his appreciation. He worked at Castle Street and Ronkswood before the new site and was instrumental in the spiritual care provision (including our lovely Prayer Room) at the present site of Worcestershire Royal Hospital until 2003.

And in amongst all that he went about his business of caregiving and compassionate actions.

Lisle sent me a beautiful poem with a short explanation, which for me sums up what the business of Chaplaincy and care in the NHS are about. It moved me; and I hope it does the same for you.He says:

“This is about Jim (I’ve used his real name). I had been with when his wife had a stroke and he was a wonderful support through her recovery. Later he was admitted himself as a patient and in the meantime his wife Isabel had died. He so much appreciated seeing someone who remembered her.

Jim

You look so pleased to see me
from far along the ward – Jim:
I recognised you after several years and,
returning after analgesia relieved the pain,
shared Communion. Christ’s love
which reminded you of the struggle
of Isabel. Memories re-enacting
that stroke which took so much.
I recalled her first words, that revealed her
Scottish – the long commitment you made
to her recovery. You took her home – risen.
Her life I remember vivid, but her death
is absence.
I left you sorrowful, but
somehow thankful for what we’d known, and shared
and treasured of Isabel – her courage, our faith
made new there at the bedside. Bread
and wine hallowed again and again – risen.

I Just Can’t Imagine It…On the Loss of a Baby

No footprint is to small to leave its impact on the world

No footprint is to small to leave its impact on the world

I JUST CAN’T IMAGINE IT…I’VE TRIED BUT I CAN’T!

I have three teenage children and life is often chaotic, but I wouldn’t be without them – even on the worst of days. And whilst, like many of us, we have had our fair share of tragedy, we are all still here.

But really I can’t begin to imagine what it is like for the mother, carrying her baby for so long, to lose this little one. And what it must be like for dad, or grandparents, or family and friends.

To be confronted with the loss of a fragile little life seems cruel; no, it is cruel. And as much as I try, I can’t put myself in that place.

But I can imagine the treatment I would want from the health professionals around me in a situation like this. I want medical competence, of course. But I want understanding and compassion and sensitivity and care.

This is a big ask anywhere. Who is up to such a task?

Well, I received a most moving letter from someone whose daughter had just lost a baby and was care for on Lavender Unit at Worcestershire Royal Hospital. Did they receive such treatment? READ ON:

“I am writing to you as I note you wish to hear of the wonderful work done at the hospital.

My daughter was cared for over six days whilst she sadly suffered a late miscarriage on Lavender Ward recently.

Every single member of staff we encountered was outstanding in their dedication to their very difficult work. Not only do such circumstances demand the highest level of medical care, but also a clear understand of very complex emotions.

Firstly, the cleaners. They were just so lovely as they unobtrusively appeared and kept [N’s] room beautiful- their level of attention to detail and kindness was wonderful.
Then the Health Care Assistants- so discreet and careful as they made sure my daughter was comfortable and was eating enough to keep her energy up.

And the doctors and consultants, of whom there were many, and yet the consistency of approach and continuity of care was outstanding. Their skills and compassion created an atmosphere of confidence and most certainly diminished my daughter’s most extreme fears.

And, of course, the nurses. I lost count of how often I saw them work beyond their designated shift times to ensure [N’s] wellbeing. Their clear knowledge and understanding of her circumstances, and their swift action at the most difficult times exemplified the very best of human endeavour.

Not only that, but everyone working on the ward showed such care and concern for me and for my daughter’s partner.

Since her discharge, I would also like to pay tribute to the Bereavement Services from the Hospital who visited [N] and her partner at home. Their visit coincided with a very hard period for her – one of those days when it is easy to be overwhelmed by sadness and loss. The visit visibly lifted both of them, allowing them to express their deepest thoughts and to receive exactly the right comfort to sustain them as they adjust to their lives.

I have written to the ward, but saw your request on the website. It’s so important, especially in our negative media-led times not to overlook the everyday work of the highest levels of professionalism which goes on in our Hospitals.”

[Name and Address Supplied]

Christmas @ The Royal: AMU, BEECH & MATERNITY

From Worcester News. 30th December 2013

From Worcester News. 30th December 2013

I had great fun putting this article together with my friends and colleagues and want to thank Tarik Al Rasheed from the Worcester News for widening its focus. Here is the full blog which I composed.

OK, let’s face facts. No one really wants to be in Hospital at all, let alone at Christmas. The season seems to speak loudly of fun, and jollity, and the TV wants us to think that everyone is having the most special and enjoyable time of their lives. We all know it’s a fiction, but we still buy into it.

But for many people Christmas will be different this year. They will be spending it in Worcestershire Royal. So is it just another day at the office for the Nurses? Well, let them tell you in their own words. This is nursing; recognising the patients’ needs at whatever time of year, and meeting them with professionalism, compassion and care.”

ALISON DAVIS- MATRON FOR SURGERY

Alison Davis is Matron for Surgery and has been nursing for 30 odd years (although she doesn’t look it!). She reckons she must have worked more than 20 Christmas days in her career and she loves it.
“Of course, most of the patients who can go home are discharged, but for the patients who remain on the wards the staff pull out all the stops and go the extra mile. It’s wonderful to see how the staff are always putting themselves out, making the patients feel as relaxed as possible. This year, of course, we will be putting up our decorations on the Beech Unit and on Christmas Day the patients will have their Christmas Meal with a cracker and lovely Christmassy napkin, and be given a present from us. It really is lovely to see the staff so happy as well.”
Alison and the staff are well aware that Christmas can be a sad time for some. “Invariably on our wards there will be people for whom this Christmas is the first one on their own, having had the sadness of losing their spouse, but the staff do their bit and offer some and love. And we can always stretch to getting those who are well enough to go home for a few hours for the day.”
Matron’s favourite Christmas story is from a few years back, in a different place. “A young boy had been in a Road Traffic Accident. He had been unconscious for a few days and it just so happened that Carol Singers came around the ward; and whilst singing “Away in a Manger” the young boy woke up.”

ANITA CUPPER- MATRON FOR MEDICINE

Anita Cupper is Matron for Medicine. She too has long experience in the NHS and has had worked more than 15 Christmases- and despite being off this year she will come in on Christmas Day and wish all her patients on the Acute Medical Unit (one of the busiest wards at Worcester Royal with 900+ patients per month) a “Merry Christmas”. Again there will be decorations and gifts for patients on a ward which will be fully staffed. Anita, described by her colleagues as a “whirlwind”, said that the ward will be full of happiness and cheer, although is well aware that there will be some people who have no family or visitors. “It is up to us provide that family element which some patients will be lacking,” she says with passion. “After all that is what nursing is all about. If Christmas is about anything it is about believing you can make anything happen!” Senior Sister Ruth Clack overhears us talking and shares her Christmas story. “One Christmas Eve I admitted a patient who came in very poorly. The Medic thought his chances of surviving were slim and I stayed late to transfer him to the Intensive Care Unit. I was delighted to see him back with us three days later and he had three good years more of quality life.” But perhaps most touching, Ruth told me that on the day that he died, “the patient’s wife phoned me to tell me the news and how much I had meant to the family. This was a while ago but it’s funny what you remember.”

PAM JONES- MIDWIFE AND MIDWIFERY MANAGER

The maternity unit at Worcestershire Royal is a special place, and with all the hype of Christmas you would be forgiven for thinking that it was the centre of Christmas in the Hospital. After all we have all seen the TV programmes on Christmas Day from Maternity Wards celebrating Christmas Babies, and the ward at Worcester often has the local radio station phoning up on 25th December asking “if they have enough hay and hot water.”
“But mostly for us it is a normal working day,” says Pam. “We enjoy working at Christmas, and it is a privilege to be involved with bringing new life into the world, but our main aim is to help the women deliver their babies safely, efficiently and in as comfortable a way as possible as with every day. Once the baby is born, the family want to get them home as quickly as possible and we do our very best to facilitate that. We do, of course, recognise it as a special time of year and celebrate it. And this year the Community Champion at ASDA in Worcester has kindly donated some festive baby clothes which we will give to each family, along with a little gift for each baby.”

REV DAVID SOUTHALL- CHAPLAIN

“There is a buzz about the hospital at this time of year, like there is everywhere else, which in some ways makes my job more challenging. So there are times of great sadness, when families need a supportive and sympathetic person to be with them for a spell; and times of great joy which are worth a celebration. The hospital is life writ large, but to be there for people in sorrow or joy is an enormous privilege. I take my hat off to all the staff working over the Christmas period. I can assure you that you will have the same level of professionalism and support as at any other time of the year and staff will continue to go the extra mile. So my thoughts and prayers are for peace this Christmastime wherever people are and whatever the challenges they are facing.”

Hope in the Face of Adversity: A Christmas Baby

Baby SOPHIA with Mum Alice and Dad Ben (used with permission)

Baby SOPHIA with Mum Alice and Dad Ben (used with permission)

In May I will have been at Worcestershire Royal Hospital as Chaplain for 5 years.

And so every now and then I bump into people who I have met in other circumstances- none more so that this story.

I was minding my own business chatting to a Volunteer in the Main Entrance of the Royal when I noticed a dishevelled man out of the corner of my eye. You kind of get a second sense when you think someone wants to speak with you, and so I asked him if he was OK. His name was Ben, he looked knackered, and he told me why. “My wife Alice is expecting a baby and I have been awake for 36 hours straight.” He said his wife was called Alice, and I wished him good luck and went on my way.

Later that day I was about to go home and I saw him again. This time he still looked knackered but with a dazed air about him; almost floating through the entrance of the hospital (on his way out to have a fag). “How’s it going I asked?” “O Great, she’s had, I ,mean we’ve had, a baby girl.” “Congratulations! Have a cigar!” I said (more a turn of phrase than an anti-health promotion message.”

He told me that their baby was called SOPHIA, and that his partner was called Alice. More than that “Alice would like to see you after what happened before.”

O dear, now the penny dropped. I obviously had some connection to this woman; (not her partner- he was new to me); and so I was wracking my brains.

I went down to post-natal, and when I found ALICE the memories immediately flooded back. Three and a half years ago I had taken the funeral of her son after a pregnancy loss. I remember Alice in particular; vulnerable and still and reserved but full of grief. And I remembered the service, and the blessing I gave to her little boy: “May the Lord bless you…”

And now here she was, and in her arms was a beautiful baby girl. And as Alice saw me her face crinkled into gratitude and relief. “Oh. I’m so glad you’ve come; you’ve really made this time special.”

I was speechless. I’d only just shown my face (and that’s enough to put most people off). I am aware that so often I’m involved in some of the saddest times in peoples lives, and, understandably, they don’t want that bringing back to them by memories evoked by my presence.

But not Alice.

So she passed baby Sophia to me and for a few moments I stood there rocking her and admiring this new life who had emerged into the world. She was beautiful, and fragile, and it felt like I was treading on “Holy Ground”.

And after a moment Alice asked: “Would you say a blessing for Sophia?”

And so, in the same words which were echoed three and a half years ago for her brother for whom time was so short, I prayed for Sophia:

“Sophia, may the Lord bless you and keep you. The Lord make his face shine upon you. The Lord turn his face towards you and give you his peace.”

And now, one final, bold request. “Can I have a photo and share it on my Blog? No worries if not!” “Corse you can Dave. You’ve done so much for you. We’ll never forget what you’ve done for your Son. We owe you such a lot!”

So glad to be there.
So glad to have, for a short while at least, become interweaved with the story of Alice and Ben and Sophia.
So glad to have witnessed a new life start her journey in the world.

Believe me I know that not all stories have happy endings.
I know that many will, this Christmas, face grief which seems insurmountable.
But for now I pass on a story that speaks of HOPE.

And say that, for me at least, my thoughts and prayers will continue to be with this little ball of ‘WISDOM’.