At the beginning of 2014, Terry Moore received a diagnosis of Ideopathic Pulmonary Fibrosis, a lung disease that occurs when lung tissue becomes damaged and scarred, making it progressively more difficult to breathe properly.
He and his wife Penny were determined that it wouldn’t stop them living their lives and the happily married couple took frequent day trips and enjoyed holidays together as often as Terry’s illness would allow.
However, in 2017, Terry’s health seemed to take a turn for the worse and he found himself becoming more and more dependent on oxygen therapy. In October of the same year, Terry was forced to rely on oxygen around the clock, canisters assisting him everywhere he went.
It was around this time that Terry, for the first time, began to show signs of struggling in getting to grips with dealing with Pulmonary Fibrosis. After speaking of his concerns with the nurse at a routine check-up at the hospital, Terry was referred to his local adult hospice, Dougie Mac.
It was shortly after this when Palliative Care Nurse Specialist Davina Bell visited the Moore’s home to assess the ways in which she could help Terry live as well as possible and to get his affairs in order. This involved discussions around writing a Will and making funeral arrangements, and she provided the couple with all the relevant information needed for someone living with a life-limiting condition.
“It took a little while for Terry to warm to the idea of receiving support from a hospice as he was always so very independent” says Penny. “However, he quickly saw incredible value in Davina’s visits and looked forward to the support he received from her and the rest of the team.”
In January 2018, the visits became more regular as Terry’s health declined. Davina suggested low dose morphine to help manage his breathlessness, and provided a supply of supplement drinks as his appetite decreased. Perceiving that Terry would benefit from psychological support, as is the case with many people dealing with the emotions associated with a life-limiting diagnosis, Davina arranged for Andrea Ryder, Psychological Therapist and Head of Psychological Services, to visit once a week to discuss and address worries and areas of concerns and to chat with both Terry and Penny.
Penny recalls: “We both found it incredible useful and talking things through with Andrea helped put us both at ease during such a tremendously difficult time.”
As Terry s symptoms worsened he was referred to the Hospices Physiotherapy service. This was to help with breathlessness and to help to maintain his physical ability using the specialist equipment in the gym. Terry spent time cycling and using the other machines whilst watching the virtual reality films on the TV which helped take his mind off how difficult his breathing was. He enjoyed his time in the gym, commenting to his wife Penny on return home that “it does me good”.
Terry had two sessions at the gym, and sadly, just before he was due to attend his third session, passed away in May 2018.
“Terry died at home, which was very important to him and what he always wanted. I’m convinced that Dougie Mac made all the difference and lifted his spirits enough so that that was able to happen, and so I will forever be grateful to the hospice” says Penny.
“Terry had made it known to me that he wanted to leave a gift to Dougie Mac in his Will and so I had been tasked with making a donation to the general running costs of the hospice. Dougie Mac needs to raise over £9.3 million of the £12 million through fundraising so it made sense to donate to such a worthy cause. Since seeing the wonderful, positive impact the gym had had on him, a Shapemaster machine was purchased with his legacy gift, so that other Dougie Mac patients can benefit from a tailored plan of care to enable rehabilitation so they can remain at home and as independent as possible like my Terry.”
Dougie Mac Physiotherapist Nicola Silk says: “The Shapemaster machine we were able to purchase is a high tech piece of equipment that allows for chest expansion which is very good for relieving the challenging physical symptoms of respiratory diseases which many of our patients are living with. There is still a perception that the hospice cares only for those with a cancer diagnosis, but in reality, 40% of the people we provide care to have a non-cancer diagnosis.”
In the quest to increase awareness about the disease, Penny has also raised money for Action for Pulmonary Fibrosis, a small charity founded to raise awareness of this condition, support patients and their families with a network of nurses throughout the UK, and most important of all to fund research into this condition which is affecting more people each year.
In addition, Penny has also kindly opted to make an annual donation to Dougie Mac on the anniversary of Terry’s death.
“We are incredibly grateful for Terry’s legacy gift and Penny’s generous regular donation” says Jill Bowler, Head of Individual Giving & Trusts, Legacy & Fundraising. “Their continued support will offer comfort, care and support to local patients and families. As an independent local charity, we rely on gifts in Wills and regular donations to be able to continue to provide our services both at the hospice and within our community.