Family Gain Strength from Peace Hospice Care

Sandhya Sakaria, wife of patient Raj tells her story.

‘If I turn the clocks back ten months, I was struggling at home, barely sleeping, barely coping and trying my hardest   to look after my husband Raj who had been diagnosed with a brain tumour. My sons, Mehul and Meraj were a great support but I was sinking with the weight of responsibility.

Raj was at a very low patch in his illness, he was refusing to let anyone help him.  For more than a year, together with my boys, we coped and did everything.  It was the hardest time of my life.

Raj was referred to Peace Hospice Care for admission to the Inpatient Unit.  When he refused I felt such despair as I did not know how I would continue to cope.  But the  Hospice found another way forward.  They offered Raj Complementary Therapy and it proved to be the turning point. A weekly massage has truly turned our lives around.

Over the past ten months Raj’s visits to the Starlight Centre for a body massage have become the climax of our week. It is so important to him and he makes it a priority over any other appointments.  The massage works wonders on him. Not only does it relax him and improve his sleep, it has  also opened him up to other Peace Hospice services.  Most importantly it’s helped all of us to come to terms with his illness.

Raj spent two weeks in the Inpatient Unit which he really appreciated.  He was so well cared for he almost didn’t want to come home!  My sons were very impressed; my youngest even remarked that the rooms were like the villas we had stayed at in Bali!

I also receive a massage from a Complementary Therapist and that helps me relax, cope and offload. Peace Hospice Care is part of our world now, it’s not just helping Raj it’s helping all of us.

Words cannot explain how grateful we are to Peace Hospice Care. It is a truly beautiful set up. I cannot thank the Peace Hospice Care enough for their support for Raj and all of us as a family.

Thank you Peace Hospice Care

As Christmas approaches, many patients and families in South West Herts will take comfort from the support of Peace Hospice Care.  Some patients are newly referred to our services, others have been using them for many months.

Terry Reynolds and his wife Shirley have been benefiting from Peace Hospice Care services throughout 2013. Terry, who has COPD (Chronic Obstructive Pulmonary Disease) has been attending  the Inspire Group, receiving Complementary Therapy and has also been supported in the Inpatient Unit and in his own home by Hospice at Home nurses. His wife Shirley also benefits from Complementary Therapy.

Terry shares his story and appreciation of Peace Hospice Care Services.

‘For a long time I was coping at home with help from my wife Shirley and the family, but I got so very poorly and when I got an infection as well I knew I needed more support.  I really didn’t want to go into hospital again and, thankfully, I was referred to Peace Hospice Care and offered a bed in the Inpatient Unit.
At the time my 22 year old granddaughter was so upset at the thought of her granddad being admitted and the word ‘hospice’ put so much fear in her.  But when she came to visit she realised that it was such a positive place that helps people who are feeling poorly.  Her fears disappeared and she could see for herself there was nothing to worry about.

My time in the Inpatient Unit made such a difference to me and my wife Shirley.  She was able to relax knowing I had all the support I needed. Shirley could visit me at any time and I returned home much more settled.  The staff and volunteers were all so nice – I’ve never had so many women looking after us as in those few days!  I felt so reassured and so did Shirley.

Once a fortnight I go to the Inspire group which is run by Day Services. It gets me out of the house, I meet up with familiar faces and it really does me good.  I also have a massage once a month from one of the Peace Hospice Care Complementary Therapists which relaxes me so much that it usually sends me to sleep.  Shirley also benefits from a monthly massage which is wonderful, it’s important that she gets the opportunity of support as well as me.

The Hospice at Home nurses’ come to visit me once a fortnight and that’s always welcome. Knowing that Peace Hospice Care is there for us is such a comfort.  We feel safe thanks to the Hospice. They have been so brilliant to us.’

Glenn’s List

Glenn Phillips, aged 48 has a long list of all the things he will never be able to do again. Motor Neurone Disease has robbed him not only of his job, independence and mobility, it has also taken away his great passion for watching live football.

But Glenn is now focusing on what he can do. He shares his story, the support he has received from Peace Hospice Care and his determination to raise awareness.

The roar of the crowd, the creek of the turnstiles and the thrill of watching the ball hit the back of the net has been part of 48 year old Glenn Phillips life since his childhood.

For countless seasons, Glenn, from Bushey, has sat down beside his brother Gary in his season ticket seat at White Hart Lane to watch the match unfold. Keeping an eye on Watford FC – his local team, has also been part of his life.

Goals, great times and the emotional highs and lows of football has run through his Spurs blue veins for years.

But on Sept 1st, 2012, Glenn made his way to his seat at White Hart Lane for one last time.  He knew he would not be fit enough to be part of the glorious game again.

‘I knew it was my last match and I would not be going back  to use my seat. My health was against me,’ states Glenn. ‘It was a hard day for me and my brother. Really hard.’

Glenn was diagnosed with Motor Neurone Disease (MND) at 11am, August 18, 2011 at the National  Hospital for Neurology and Neurosurgery. It is a date etched in his mind.

MND is a progressive debilitating disease that  affects two in every 100,000 people. Around 50% die within 14 months of diagnosis. There is no cure and those with MND experience  the motor nerves of neurones in the brain and spinal cord being affected leading to loss of mobility difficulty with speech, swallowing and breathing.

‘I cannot explain the hell I went through for the first two weeks after my diagnosis,’ said Glenn.  I know there is no way out of Motor Neurone Disease. It will kill me. And I do look at the world so different now. I look at all the simple little things that everyone takes for granted.

‘Soon after my diagnosis I had three holidays to the States with family and friends. We had some great times. But holidays are in the past now.  I have a long list of all the things I can’t do anymore. Going to Spurs is one of them.  Not being able to cook, bath, drive, write, use my computer, wear jeans, or go to the pub are also on my list.  I can’t even do my own jeans up.’

Despite his daily battle and deterioration Glenn, who was formerly Head of Faculty at Oaklands College, remains strong in mind. Motor Neurone Disease has not taken his sharp sense of humour or his determination. He is battling on and has a mission to manage MND with help and support.

One part of Glenn’s life that continues are his visits to the Starlight Centre at Peace Hospice Care.

The Starlight Centre offers support to people across South West Hertfordshire with a life limiting illness. The centre offers a range of medical, nursing, therapy, social and support services for people from the earliest stage of their illness aiming to help patients take control of their illness and plan ahead.

For one hour every fortnight, Glenn benefits from a deep body massage, social interaction and the rapport he has built with his Complementary Therapist.

‘That massage does everything for me,’ said Glenn. ‘I hugely look forward to it. I used to be able to drive myself to the Hospice and saw it as a pleasant part of my week.  Now my carer drives me and the massage has become a necessity.  An absolute necessity.

‘When I first got referred I was not aware that there would be Complementary Therapy available at Peace Hospice Care.  But I found out there is so much available. I was given a chance to try it all and find out what suits me.  The massage is just right for me. After a massage it is the only time I can feel any sensation in my arms.  It reaches the deep tissue and it’s wonderful.  And I get to have a laugh. Socially it is very important.  Of all the things I can’t do anymore, I will continue to go to the Starlight Centre at Peace Hospice Care.’

Glenn will also continue checking the football results, catching up with matches on TV, keeping a close eye on Spurs, and Watford FC.

‘I have always checked out Watford’s results and hoped they do well.  They are my local club after all and it was disappointing they didn’t go up last season.’

In addition to keeping football as part of his life Glenn has another major aim.
He is determined to raise awareness of Motor Neurone Disease and is reaching out to friends, family, football fans and the community to put it on the map locally and nationally.

‘This disease is a living nightmare.  It is too abstract to believe you are going to die with Motor Neurone Disease,’ said Glenn. ‘I won’t be here in a few years time.  But with the time that I have left I want to create awareness. I have been instrumental in launching a local meeting and social group for those with MND.  We have our first meeting in December and it will be an important part of a local branch of MNDA.

‘People like me with MND will have a chance to come together with their carers or family. It’s important  those with MND  have a chance to meet, and I am driving it forward.’

Glenn also has inspired his mum to become involved in the Bournemouth group of MNDA.

‘Giving up going to Spurs still hurts and it’s hard for me and my brother. Any football fan would understand that.  But I try on concentrate on what I can do.
‘I can continue to get support from Peace Hospice Care and raise awareness of Motor Neurone Disease. It is my chance to make a difference and reach out to people. My voice is deteriorating. In time there will be more ‘can’t do’s to add to my list.   But I am still determined to communicate and spread awareness. That is my aim. That is what I can do.’

To find out about Complementary Therapy and other services at the Starlight Centre call 01923 330330 or email us

To find out about the local branch of Motor Neurone Disease visit
www.mndasouthherts.org

Those with MND and their carers are invited to attend the first social meeting group on December 11 at Boxmoor Trust Centre, London Rd, HP1 2RE.

Match of the Day for Lesley

Match of the Day for Lesley

When Lesley Boatman leads the Watford Football Club players out onto the pitch against Derby County on Saturday October 19, pride, purpose and joy will shine through her smile!

Lesley will be cheered on by her two sons Rob, 35 and Steve, 33 who will be sat amongst the Vicarage Road crowd.  Her third son James, 29 will be thinking of her on his holiday in the Philippines, and staff from the Peace Hospice will be there to share her magnificent moment. Taking steps onto the Watford Football Club turf is a turning point for 58 year old Lesley.

In January 2012 the mother of three was diagnosed with breast cancer and underwent months of chemotherapy and radiotherapy. Having hit rock bottom she found the lifeline she desperately needed through a six week HOPE course run by the Starlight Centre at the Peace Hospice.

The weekly sessions are available to individuals like Lesley who have had cancer and are getting on with their life after treatment has finished.

‘It was life changing for me,’ said Lesley. ‘My cancer diagnosis and the treatment was so tough to cope with. I lost my job, I lost my energy, I had a severe reaction to the chemotherapy, I was stressed and agitated and felt like I had a rock inside of myself. But I refused to be a cancer patient. Being supported every week was just what I needed.’

Following the HOPE course, Lesley began a meditation drop in sessions at the Starlight Centre at the Peace Hospice.  It was just what she needed to  help turn her life around.

‘Everyone should have meditation,’ beamed Lesley. ‘It has benefited me so much.  I look forward to going to the Starlight Centre every week. If I look back, I was so low and stressed. Now I can smile again and be positive. The Peace Hospice is so much more than a hospice.  It is there for people like me who need support to get on with life again. The staff really care. They have turned me around.’

Lesley thanks the Starlight Centre at the Peace Hospice for their support.  She thanks her sons, friends and family and walks out  at Vicarage Road she will be restored and ready for the next chapter in her life.

‘My sons are simply overjoyed that I am going to be leading out the players.  They have watched matches at Vicarage Road and remarkably when my eldest son was very young he dressed up as Harry the Hornet and did a fun run with me and was in the local papers.  We’re back at Vicarage Road together and what a great day it will be for us all.’

Come on you Lesley. Come on you ‘orns!

This match day focus strengthens Watford FCs strong support for the Peace Hospice, which cares for people living with a life limiting illness and supports their families from across South West Hertfordshire.

It will show the Vicarage Rd home crowd how the Starlight Centre helps patients and their families live well and manage their life limiting illnesses.

Watford FC and their fans  are also extending their support to their local hospice with their ‘no show’ campaign. In a bid to reduce the number of ‘no shows’ at its home games during the forthcoming season, season ticket holders who don’t attend the match can have their seats re sold to benefit the Peace Hospice and Watford FC’s Community Sports and Education Trust.  Match day programmes will also regularly feature ‘Peace Hospice patients stories’.

The match day magic moment comes as a culmination for Hospice Care Week,  a national week of action to raise awareness of quality hospice care.