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.”

Running in her Dad’s Memory

Charlotte Ralph has raised almost £2000 for Hospice of the Valleys by running the Newport Marathon in memory of her dad. Charlotte’s father, Andrew was a keen runner himself and had been a member of the Lliswerry Runners for around seven years and took part in several half and full marathons. It wasn’t until Charlotte left university that she began joining her Dad on his runs and then joined the Lliswerry Runners herself.

Initially Charlotte would struggle to keep up, saying:

“At first I was always behind him but he would always run with me and never leave me behind,”

Through commitment and perseverance Charlotte became fitter and faster and could finally keep up with her dad:

“When I got faster he would always say that ‘I had age on my side’, unfortunately, when he got ill he had to give up running which he hated.”

Even after having to give up his own running, Andrew was so supportive of his daughter that he would be at every single race, always keen to spur her on.

This year, Charlotte took part in her first ever marathon in her dad’s memory, raising funds for the Hospice who supported him in the final stages of his illness. Taking on such a big challenge not only demonstrates the special relationship between Charlotte and her father, but shows Charlotte’s natural determination to overcoming obstacles to reach positive outcomes even in spite of devastating circumstances.

Charlotte has said that she chose the Hospice of the Valleys because of the “great support network” they provided for the family during her dad’s cancer battle. And that:

“After my father passed away they called to see how we were and were just amazing. As I had never done a marathon before I knew it would be something that I could do to raise money for them.” Charlotte also wants to say a special thanks to the Lliswerry running club who helped in her fundraising.

Helen’s Story

Helen’s husband Graham shares his story of how the hospice supported him and his children following the death of his wife Helen, aged 43. Helen died in mid-December, in the small hours of the night. The hospice social worker was there, pre-arranged the next day, which happened to be a Saturday. The social worker supported me in telling my children who were aged five and six and
we put up the Christmas tree up together. Doing something really helped. Although the children didn’t really understand that Mummy wasn’t coming home any more. I needed to talk. Whenever I needed to talk the hospice social worker was there on the phone, or would arrange to pop and see me. The hospice gave me certainty in a very uncertain time. We drank coffee. We laughed. Often I cried. Hard for a bloke of six foot two to cry. But the hospice guys let me. With their help, I gave myself permission to grieve and deal with life. They were at the funeral when the reality hit my eldest and the tears flowed. I had someone by my side to help me. My girls found a new friend who played games with them, did colouring with them, and helped them to understand. Visits became less regular as time progressed. Every time you stumble, you can shout, and they answer.

Harold’s Story

Pam Hopkins experienced first-hand the support that the hospice and more specifically the CARIAD service could offer. Her husband Harold was initially diagnosed with Alzheimer’s in December 2014, however this later changed to Lewy Body Dementia with Parkinsonism. Originally Pam was reluctant to receive support, but she praised the patience of the nurse who persevered so that Harold and the rest of the family could access the support they needed almost two years later.

“The nurse was wonderful and would ring me every month to see how Harold was and to check on how me and my daughter Sarah were coping”.

Over time the clinical team developed a strong relationship with Pam and Sarah and made them aware of the varied support that the hospice and the CARIAD service could provide for them all.

The whole family were able to benefit from not only practical support, but the Hospice at Home service enabled Pam and Sarah to have a break for a few hours or to get a good night’s sleep. Both Harold and Sarah also benefited greatly from reflexology. The therapist was also able to provide emotional support for Pam who would look forward to her visits at home.

“The hospice’s intervention came at a critical time for us and my husband was very well looked after at the end of his life by the hospice team”.

Phillip’s Story

Phillip was referred to the hospice to help with his symptoms, in particular his pain. Phillip accessed therapies, family support and nursing services who all worked together to help with the problems that he shared with us as he got to know the team better.

Phillip has now been discharged from the hospice, this is what he said about how the Family Support Team helped him.

“The practical, financial and emotional support has made a tremendous difference to me, at one of the most difficult times of my life. If a problem arose, the exceptional staff would step in and provide help, advice and support. It would seem like the team had taken the problem from me, but they had just supported me to get through it. I cannot thank or praise the team enough, for the difference they have made to my partner and myself, during a very difficult time for both of us