Bethany’s story

Here Bethany one of the Hospice’s HCA’s shares her story around why she does her role, what motivates her and even how she manages to stay awake through the night.

How long have you been a HCA with the Hospice? 

Only 2 and a half months

What is it that drew you to apply for the role?

To be a part of someone’s life right at the end and still make such a positive impact was really important and motivating for me

What do you enjoy most about the role?

The thing I enjoy most about the role is the reason I applied in the first place, the positive impact we have, making things easier for the patient and their families.

What does the role involve?

The role involves anything from personal care needs but mainly giving emotional support to the patients and their carers , allowing them someone to talk to in the middle of the night when they can’t sleep and are worried or anxious about something. We also provide the respite for carers for them to have a break as well so they have time for themselves and don’t go into carer crisis.

Is it hard staying awake all night? And how do you manage it (have you got any little tricks or tips you use to stay awake)

It can be, no matter how much you sleep during the day there comes a time when your body is fighting to go to sleep.

Best thing that keeps me awake is keeping busy and keeping myself occupied. If the patient is sleeping and I’ve done all my jobs, I’ll try and watch TV or out something on the IPad to keep me occupied!

What difference do you think your role has on patients and their loved ones?

A massive difference, we are there at a time that can be a very dark time for some people so being there for them providing the emotional support they need can really shine a light on their day or night! Its having someone to talk to as sometimes they don’t want to speak to their families as they don’t want to worry or trouble them. So us being there and building that bond with them, they will open up and speak to us.

Why should people get involved in the Big Stay Awake campaign?

People should get involved just to see how hard it can be to stay awake through the night when all your body want to do is sleep! Plus we demand on the service continues to be constant and so any funds that are raised can help us all continue supporting patients in their homes where they are happiest and most comfortable. While giving their loved ones a much needed break.

Tania’s Story

My involvement with the Hospice began almost thirty years ago, when my Mum to whom I was extremely close, was diagnosed with breast cancer. We were visited and supported by Dr Lamerton and Jayne Medlicot, who founded the Hospice. They cared for mam so well and always kept us informed of what was going on. Mum sadly passed away in 2009 after being diagnosed with secondary cancer in the bones.  As a family, we had so much support from the Hospice and nothing was ever too much trouble.

Nine months after Mum died, my Dad was diagnosed with Bowel Cancer and once again was referred to the Hospice, knowing the care that we had already received we had no hesitation in the Hospice being involved. Whist still reeling from the loss of my Mum and now Dad’s illness my husband suffered a massive heart attack at home and passed away suddenly.  Still grieving for Mum at one point I felt so confused and wasn’t sure who I was grieving for! I didn’t know if I was coming or going and emotionally felt drained. Again the Hospice were there at my side, I was given so much support, love and reassurance, I knew they were there for me and it was a lovely feeling.

Unbelievably just a few years later my daughter Kerry was diagnosed with breast cancer and died just a year later age 34. I was totally devastated, losing a child is the hardest thing any parent could go through. However, I worked hard to stay strong for my grandson who was only 14 and my dad who was still battling on. Once again, the Hospice were there to help. My Grandson was finding it very hard to cope but thanks to the counselling from the Family Support Team, he’s in a much better place. Kerry would be proud of him and the man he has become – he’s even training to become a nurse himself!

Dad passed away in 2018 and this opened the floodgates once again, it really hit me hard. I knew I could not cope and so turned to the Hospice for support. In my first session with Jonathan the social worker, I cried for the whole three hours. With each session things started to get easier and after such a sad time, he has helped me pull out all the good memories of my family.

It still hurts of course, but I am getting there and I want to move forward. One of the ways I’ll be doing this will be by remembering everyone I’ve lost this Christmas via the Hospice’s Light up a Life campaign. I’ll be dedicating a light on their virtual Christmas tree to each of my family members and writing a message to go with it.

I will be forever grateful to all the staff at the Hospice for the care and support they have given me and my family over the last thirty years. I really do not know how people would manage if they didn’t have the Hospice to turn to.

Lynsey’s Story

‘You treated us like Family’

“Kindness is having the ability to speak with love, listen with patience and act with compassion” RAKtivist.

Whoever spoke these words is a stranger to me. For what reason they were spoken no one can say. But I find myself grateful to a stranger for giving me the words to express how I feel about the staff and volunteers at Hospice of the Valleys.

They came to us at our most difficult time when my mother had been diagnosed with cancer.

Kindness, patience and compassion was in abundance along with an expert duty of care and a gentle and professional demeanour towards tasks that needed to be done.

They came to us at all hours of the day and night giving us the help and support we needed and putting our minds at rest knowing my mother was in good hands.

Jonathan, from the Family Support team, supported me in a way that no one else has ever done, and our chats together helped me overcome some anxieties and come to terms with my mother’s passing. Due to the Covid-19 restrictions we spoke outside under a shelter at the Hospice and his calming words seemed to blend with the scenery. The hills, the trees, and the leaves seemed to rustle and speak in calming whispers.

The Hospice refused to let the pandemic hinder either treatment or care and whenever new restrictions or regulations threatened them in carrying out their duties, they found a way around it. Nurses and carers still came, and we slept at night because they continued to provide the support we needed.

The staff and volunteers at the Hospice were once strangers to us, but they treated us like their family.

Written by Lynsey Wheeler on behalf of her late mother Ann Wheeler, her father Brian Wheeler and sister Catherine Wheeler

Annie’s Story

I don’t know where to start ~ All I know is the Hospice helped my late husband, Phil, who passed away quite recently and myself get through a good few years of utter despair and for that I will always be truly grateful.

We first came into contact with the work of the Hospice when Phil was admitted into the local hospital and it was there that we were able to receive Complementary Therapy with Mat, how amazing!

Phil took a little convincing to try it at first, but it helped him so much to relax and take away a little of his pain and it certainly helped me by making my days calmer.  The support from Mat continued on and off and I am still receiving support from Mat today, helping me to deal with my bereavement.  Covid-19 hasn’t stopped the sessions – Mat calls me at a set time and I put the phone on loud speaker and away we go!

I can’t really put into words what the Hospice has done.  Phil was poorly for a very long time, in and out of hospital, close to dying so many times, but the Hospice was always there for us.  I knew they cared, making Phil feel special and it made him feel safe, he told me this on many occasions.

The visits by the Hospice nurses helped me and Phil as well.  They seemed to know how I was feeling, without me having to say anything.

All through our journey, I had another special person who supported me through some dreadful times and that is Jill Bowen (Social Worker at the Hospice).  Jill has been my angel!  It’s difficult to explain to an outsider just how ill Phil was – but whatever the situation Jill has been there for me.  I could tell Jill anything, she helped me so much and like my contact with Mat it continues throughout the Covid-19 crisis.

When Phil passed away at our home, Jill knew that I was on my own and she came over to support me.  She gave me comfort and support during those hours.  I will never forget that day and what she has done for me

Dr Dylan Harris, the Consultant was so gentle with Phil and made sure in his last days that he wasn’t in any pain, as far as we could tell.

The Hospice at Home Team were so lovely, especially Nanette, who Phil liked so much – such a lovely caring person.

Reverend Roy Watson, the Hospice Chaplain came to see us and it was lovely to see Phil’s face light up when they discussed sport.  Just before Phil deteriorated Roy mentioned in passing that he could bring his case for communion if wanted and to my amazement Phil asked if he could have communion the next time Roy visited.  I can’t begin to say how beautiful and moving it was.  I think Phil realised his time was near, he hadn’t been to church much, but it gave him comfort.

By chance I mentioned to Jill that it would be so lovely if Roy could take the service at the crematorium and he agreed.  This was during the height of lockdown, so all social distancing measures and restrictions were in place, but it was a wonderful service – another big thank you!

There must be many people like me and my husband receiving help and support from the Hospice – but they make you feel as if you are the only people important to them – Thank you angels X

A Day in the Life of Hospice at Home

My name is Alison and I work as a Health Care Assistant (HCA) for the Hospice at Home (H@H) Team at Hospice of the Valleys, we care for patients overnight in their own homes, within the Blaenau Gwent area.

I wanted to share my experience of working as a HCA  for the hospice throughout the Coronavirus pandemic and how my colleagues and I have had to adapt to continue to provide care safely to vulnerable patients of the Hospice at Home Service.

A typical shift starts at 10pm when I arrive at the patient’s home ready to provide care overnight whilst the family catch up on some much needed rest, knowing their loved one is being cared for and all of their needs are being met during the night.

Before Coronavirus, I would arrive at my patient’s home dressed in my uniform, however since the pandemic many things have changed and now I arrive in full personal protective equipment (PPE).  This includes an apron, gloves and a surgical face mask to help protect my patient, their family and myself.

Initially I found arriving in full PPE difficult, especially if it was the first time meeting the patient and family.  They were unable to see my face and it just seemed so impersonal not being able to see my facial expressions or a friendly smile at such a difficult time in their lives.  I found myself using my eyes more when communicating so that they could read me a little better when I was talking, though it did not feel natural it made it a little easier.  The face mask also made communicating difficult, it can muffle speech and I felt it was a little harder to breathe easily when talking.

Wearing full PPE for a 9 hour shift could be very uncomfortable especially during the summer months when there were some very hot nights.  The fitted masks over a long period, would leave marks on my face and make my nose sore, but they were very much needed to keep everyone safe.

During the night I often provide emotional support, when needed, for both patients and their loved ones. To be honest, I have  found it very difficult not being able to give a comforting hug or hold someone’s hand when they were upset and in need of some comfort at a very difficult time in their life.  I could only show empathy with words and on times all a person wants and needs is a comforting hug.  I am a caring person by nature which is why I work in palliative care and not being able to offer this contact made it extremely hard for me.

I am immensely proud to work as part of the Hospice at Home Team and feel very privileged to be invited into a patient’s home to provide care at such an emotional and difficult time in their lives.  I have met some wonderful families during my 5 years working for the hospice and I’m proud to work with such a great multi-disciplinary team providing invaluable clinical care and support to the people of Blaenau Gwent.

Stay safe everyone in these challenging times, we will get there together.

Alison Foote, Health Care Assistant

Jacqui’s Story

Losing someone you love is undoubtedly the hardest thing any of us will go through.  But to lose someone during, or because of, the current COVID-19 pandemic is even more heart-breaking.

Chris Tiley and his daughters Meselle and Aimee share their moving story of how Covid-19 impacted their final weeks with their wife and mother Jacqui, who sadly passed away on 25th April, aged just 57.

Jacqui had been battling cancer for fourteen months but the COVID-19 pandemic meant she spent her final days in hospital without her family by her side and with no-one to hold her hand when she passed away.

Jacqui was referred to Hospice in July 2018, following her diagnosis of cervical cancer, which had spread to her lymph glands and lungs.

‘All of the team at the Hospice were amazing, I can’t put into words how brilliant Michelle was, she advised mam what she could claim when she wasn’t able to work anymore and helped sort out the paperwork. And since mam has died she has helped me loads, changing everything over that was in mam’s name.

Jayne the nurse was also lovely and helped mam understand what things meant when she would have test results or appointments with the doctor, she would call in to see mam just to check in on her, as mam wasn’t one to ring and ask for help’ Meselle recalls.

Jayne continued to support Jacqui and the family during lockdown, via phone calls and also visiting wearing full PPE.

Meselle said: ‘Mam was so ill for the last month that we couldn’t hug her or kiss her as she was so at risk of catching the virus and we were so afraid of giving it to her. I can’t put into words how difficult that was.’

On 16th April Jacqui’s condition deteriorated and so the family called Jayne, When Jayne arrived she suggested that Jacqui needed to go into hospital as she was having trouble breathing.

‘Mam had always said that when the time came she would go into hospital to die as our home was our happy place and she didn’t want us to have sad memories of her passing away here– that was mam always thinking of us. Although when she went in the ambulance that day we didn’t think she wouldn’t be coming home’, Messelle recalls.

‘I sat on the settee and cuddled her while we waited for the ambulance to come.  I didn’t think it would be the last time I held her in my arms’, Chris recalls.

Due to the pandemic none of the family were able to go with Jacqui, she had to go alone in the ambulance and the family had to wait at home for news on how she was.  They also weren’t allowed to visit her in hospital and so all contact was via the phone and FaceTime.

After being in hospital for a week with no physical visits from her family the hospital called to say that Jacqui had requested to see Chris. They would make arrangements for him to go in to see her, but he would have to wear full PPE.

It was during this visit that Chris was told by the doctors that Jacqui’s condition was deteriorating and it could be a matter of days that she had left. Chris had to shoulder this news on his own and then go home and tell his two daughters the earth shattering news.

The girls were totally devastated by the news but felt so helpless and they couldn’t be with their mum during her final days and also couldn’t help thinking of their mum being in hospital all alone.
Left totally distraught Meselle contacted the hospital who agreed that one other family member could go in to see Jacqui.

Meselle was the last person to see her mum alive in hospital and heartbreakingly, Aimee and Chris didn’t get to say their final goodbyes. Aimee recalls:  ‘All I wanted was a cwtch from my friends but they couldn’t come round to the house – it was so hard.  Losing a loved one is always hard but having to deal with it during the pandemic has been so much worse.  If, by sharing our story, we can help just one other family then we will have done mam proud. Knowing the hospice is there to support us really has helped.’

Childhood Bereavement

It is estimated that 92% of young people experience some form of bereavement by the age of 16 in the UK.

The vast majority of children will cope with support from their family, friends and school community, but for those who are unable to be supported in this way, the Hospice bereavement team may be able to help.

Although grief is a normal life experience Western society tends to avoid talk about death and dying which can make some of us reluctant to talk about grief, particularly to children and young people.  At the Hospice, specialist bereavement practitioners are on hand to provide support.  Children cope and respond best when supported by those trusted adults in their life who know them best. We can support family members to find the words to talk to their children and offer reassurance.  We offer consultancy and training to professionals to raise awareness of bereavement and grief in children and young people and how to support someone who is bereaved.

The Hospice can also offer individual support for those with more complex bereavement needs.

Layne’s Story

The passing of a loved one can have a devastating impact and for one man in particular he was able to cope thanks to the care and support that Hospice of the Valleys was able to offer him and proved to be a vital lifeline.

As an only child Layne’s mother, Pat, was his life and they were extremely close.  Pat lived next door to Layne and although she loved her own independence Layne visited at least three times a day.

One day while visiting his Mum Layne became concerned and following tests he received the devastating news that his Mother’s prognosis was terminal and no treatment was available.  Layne was asked if he wanted support from the Hospice and at that point he had never heard of the charity or what we did, but he was relieved to be offered some help.

Pat was initially cared for at Layne’s home where she went to live following her discharge from Hospital, being visited by the nurses, physiotherapist and complimentary therapist.  The Family Support Team also offered support as Layne was reaching breaking point and struggling to come to terms with his mother’s prognosis.

“The Family Support Officer was like a therapist and seemed to be able to answer all my questions and what he said made sense, he could feel and understand what I was going through. I felt close to the edge and in a really bad place but he encouraged me to attend Activate your Life sessions at the Hospice, this helped me to look at things in a different light, I was unable to change what was happening but learned to look at things in a different light and live for today.  This put me in a better place to accept what was going to happen. I knew I wasn’t on my own, he really helped me and I can’t praise him enough” says Layne.

Pat passed away in January 2019 and although devastated by his loss the support that Layne received from the Hospice has enabled him to cope.

“The Hospice gave me the help and support I needed when there was no one else that I could turn to.  I knew the Hospice were behind me 100% and for what they did I can’t thank them enough.  People should have an insight into how my life was turned upside down and they helped put me back together again.  They gave me the confidence to look after Mam giving us special time together.”