I had been diagnosed with respiratory failure, otherwise known as COPD, and I knew it was serious and knew how serious, but I did not know what to expect following on from that. I could not see into the future, I could not see a future, in fact.
When the COPD team said, “we are going to refer you to St Barnabas,” if you do not know what St Barnabas House does, being referred to a hospice is not a welcome idea. But a lady who was part of the Community Team came to see my wife and I at home, something I did not know St Barnabas had, and she explained what it was all about. I said, “OK, we will go for it,” but I did not know what to expect.
The welcome you receive
I had what I suppose is the most common concept of a hospice as being about the end of life, but it was not. Back in March I visited the hospice and was met by a lady who, it turned out later, was a Counsellor.
She showed me around, we sat and chatted, she asked my background and my history and my health and so on, and I felt comfortable. The surroundings were great. It moved on from there and I realised very quickly that it is not about end of life, it is about living. You suddenly see that there is an opportunity for optimism.
The first time I came to the hospice I was met by Ann, one of the staff nurses, and was introduced to the Day Hospice Team, and what a team they are! You immediately felt wanted, not just welcomed. There is a big difference and your outlook changes.
There was entertainment on, a singer of all things; not something you expect to find in a hospice.
Care for all people
I have been coming here for three months and I have never heard end of life mentioned. People do not talk about illness, it is quite extraordinary.
There are all sorts of different people here. There are people with respiratory failure, renal failure, and they recently set up the Disease Specific Nursing Team with specialised nurses. From outside St Barnabas you have not got the faintest idea of how much they are doing. What it is providing is without price. What is more, you are not charged for it!
You come into a place of calm, of peace, and in fact of happiness. How you work that out, I do not know! It is down to all the people here, the volunteers as well. You have got people who come here several times a week just to help out, doing everything from giving you tea, coffee and juice, to making sure you are comfortable and finding you a cushion.
People with other diseases and other illnesses are all in the same boat. They are all possibly facing end of life eventually, do not know when, it does not matter. But they are company, company who understand each other and each other’s emotions.
Support for carers
People do not think about the carer so much and the burden they carry. St Barnabas have been very clever. They have put together a system which means there is someone there for the carers all the time. They can pick up a phone whenever they like and ask for help. They can go for counselling themselves. They can even have someone come and visit their home to support their needs in looking after another person.
Counselling is only part of it. They can come to an art group called Creative Space, and they can go on trips with the patients. There is that constant sense of support, they are not alone, and this is a constant reassurance to the patient, not just the carer.
What is laid on for the patient and for the carer, is there and it is freely available. It is supported by the most incredible team of people. I had never been in counselling, I have always been a bit sceptical, but it changed my life!
Emotion is a big part of hospice care
I had never been in a situation where I needed to be cared for, and that is a revelation. I did not realise what a dark space I had gone into until I came here. I look forward to coming to the hospice. Now, put that in bold terms in a newspaper, people are going to read that and say he is mad!
Emotion is a big part of what St Barnabas and the Day Hospice are doing, because you can be yourself. You can be as crazy as you like and as cheerful as you like, and we have got one or two here who fit that bill nicely!
You can be quiet and introspective, you can even sleep in a corner and nobody will query. Nobody bats an eyelid as to who you are, what you are, what you do or did, it is who you are now. For me, that is what St Barnabas, the Day Hospice, the Community Team and the whole system have created, and I can never say thank you enough.
Richard died on September 29. He was very keen for his story to be told, and sincere thanks go to his family for sharing it.