Penny Jarvis’s husband Colin died in 2009, five years after he was first diagnosed with a rare degenerative brain disease. Penny was Colin’s main carer and he was able to die in his own home surrounded by his family and his own things according to his wishes. Ten years on and Penny, a Nursing Assistant, now helps other families in a similar situation as part of the Hospice at Home team at Sue Ryder South Oxfordshire Palliative Care Hub.
My husband was first diagnosed in 2004. He had started slurring and his speech became impaired and we initially thought he might have had a transient ischemic attack (similar to a stroke). He went into the hospital for tests but they were inconclusive.
When he became very poorly again they did lots and lots of tests, and finally sat us down and said that he had a degenerative brain disorder.
“The Sue Ryder Nurses immediately took us under their wing.”
We carried on as best we could. They said he would eventually lose his ability to walk, talk, eat and swallow and, although they said it could take years, things actually started to deteriorate really quickly.
There were lots of telltale signs: there was the speech impairment and he was finding it increasingly hard to walk. In 2008, I had to give up work and, by late September, he was very poorly and the doctor referred us to Sue Ryder.
The Sue Ryder Nurses immediately took us under their wing and Colin started going up to Nettlebed [now the South Oxfordshire Palliative Care Hub] to the day hospice so I could have a break on a Thursday. I was looking after him and three teenage daughters so I really needed that time out. It gave me a few hours so I could just go shopping or have a coffee with a friend and have a little break, and he enjoyed it too. They were marvellous.
The Sue Ryder Nurses up there were so lovely and, as time went on, I was introduced to the community matrons. [The Sue Ryder community matron scheme has since developed to become a full Hospice at Home service.]
Honouring Colin’s final wishes
Colin’s health deteriorated rapidly through 2009 and, after further tests and scans, on 29th September they told me that they had found cancer in his lungs, and that it had spread to his pancreas, spine and bones, which was devastating. I remember asking if Christmas was a reasonable request.
We left the hospital on the Friday. My husband’s wish was to be at home. He didn’t want to be in hospital; he wanted to be in his own environment, surrounded by his own things with his family and friends around him. Every day I was talking to the Sue Ryder community matron and our GP was also a wonderful support.
Colin refused to have any care so it was just me 24/7 and my girls were also fantastic about helping their Dad. I nursed him until he died on 21st October. We didn’t even get four weeks in the end but it was exactly how he wanted it to be. He had his own bed linen on the bed and a fleecy blanket that he liked; there was nothing clinical about it and it was just us and the girls.
How I came to work for Sue Ryder
The following year, I went to work in the community as a Support Worker, which was my daughter’s idea, and spent four years doing that. I also worked for the ambulance service for five years, but when I saw Sue Ryder South Oxfordshire Palliative Care Hub were advertising for Nursing Assistants to work in their Hospice at Home scheme, I just thought: ‘That’s the job!’
After going through what I did with my husband, I felt I would love to be able to work in palliative care, to be able to use my own experience to support other people who were going through it.
I remember going for the interview and I really felt it was the job I was meant to do. They rang me that very same day and offered it to me.
I have been with Sue Ryder now for about a year and I absolutely love it. Some people are unsure about intervention from the outside world but it’s about gaining their trust.
I sing to them! I find people often find comfort in music. It really does break the ice and often they will join in and sing with me. It’s things like that which make the job so wonderful – when you can break down a barrier.
We have a fantastic team and I wouldn’t want to work anywhere else. No day is the same and I never wake up thinking: ‘I don’t want to go to work today.’ It’s a privilege to be on that journey with someone and to support them through it.
Our useful Sue Ryder 'A Better Death' guide can help you discuss dying and plan for the end of life that you want.
Penny Jarvis is a Nursing Assistant at our Sue Ryder South Oxfordshire Palliative Care Hub’s Hospice at Home team.