Inspirational Stories

Simon's story

Simon Leigh used to think Hospice looked after elderly cancer patients in their last few weeks of life. At the age of 46 he is terminally ill with genetic emphysema and is now a Hospice patient himself. He has gone from having no idea of the range of services Hospice provides, to thanking its staff and volunteers for restoring his enjoyment in life.

Diagnosed with Alpha-1 antitrypsin deficiency 10 years ago after a bout of wallpaper-stripping brought on his first shortness of breath attack, Simon is now confined to bed and permanently attached to an oxygen concentrator. He says it can take him an hour to get to his en suite toilet and back to bed, and candidly admits he is "one decent dose of pneumonia away from the end". He was able to draw on his life insurance policy because the respiratory specialist confirmed – in September 2008 - that he was unlikely to live beyond 12 months.

"I only half jokingly say that I'm now on bonus time," Simon says.

Despite the ongoing deterioration in his health, he says he is much happier now than he was 20 months ago when he asked his GP for a referral to North Shore Hospice. They had discussed Hospice in general terms over the years since his diagnosis but by January 2008, he says, "the writing was on the wall".

"I was already getting home care through the District Health Board twice a week and I still wasn't feeding myself properly. I was in a pretty poor emotional state and had entertained a few suicidal thoughts."

He and his wife, Michelle, had separated two years earlier but remained on good terms and, when Simon's health declined, they looked for a suitable house to rent together. They found what they needed on the North Shore and made the move in July 2008 – Michelle upstairs with their boys, 12-year-old Kieran and 15-year-old Dylan, and Simon in a self-contained unit downstairs.

While the move was necessary, it put Simon under considerable strain and he believes it was the catalyst for he and his doctor getting Hospice involved.

"She sent the referral and within about two days it was like being engulfed in a small cyclone," he says. "All these people came out of the woodwork."

The first was community palliative care nurse Suzanne Walding (Suss). Simon describes her as "a one-off character from Lincolnshire - very direct and with a wicked sense of humour".

"She was just what I needed, in having the right personality and to give me a good kick in the pants, as well as being supportive," he says.

Suss sorted out a District Health Board needs assessment, counselling, equipment, occupational therapist and physiotherapist. The equipment included a walker, showering stool, a bed lifter – recently superseded by a hospital bed – and, most importantly, an oxygen concentrator that filters the nitrogen from the ambient air to serve up a potent mix of 91 percent oxygen.

"It all happened so quickly and efficiently and the communication was really good. All the nurses since then have been really good and positive too, but Suss is one out of the box," Simon says.

He now gets a call or a visit from a palliative care nurse at least once a week. With his medication under control his need for nursing has reduced, but fast action is needed if he suffers a shortness of breath attack or contracts an infection.

Anti-anxiety medicine is a recent, and crucial, addition to his regime.

"I started to get shortness of breath attacks more frequently and with apparently less provocation," he says. "I'm sure a good part of it is psychological and, with the knowledge that I'm not too far from the end, it's all getting a bit scary."

Although every attack or illness prompts a new wave of grieving and coming to terms with his fate, Simon says he is "in a good place" mentally. He gives much of the credit for his state of mind to the Hospice counsellor Maxine.

"When she first came I was on the verge of being suicidal. I'd had enough and I was ready to give up," Simon says. "Now, I'm physically so much worse but I'm enjoying life much more. I can't speak highly enough of her, and her colleagues. As well as Maxine there are several other Hospice staff members I'm proud to call my friends; they are so much more than just caregivers and health professionals."

Maxine is now North Shore Hospice's Family Support Team Leader but she still visits Simon. She also has regular chats with Dylan – about school, how he's getting on with his brother and other teenager-relevant topics, but rarely about his father's health. Dylan says he doesn't need to talk about that. His feeling for his dad shows up, though, in the nightly ritual of ‘tucking him in' – making sure he's comfortable and readying his coffee for the morning.

"He can't do anything for himself but it's just one of those things you've got to deal with," Dylan says. "I've been doing it long enough that it's normal."

Dylan was just a toddler when Simon got sick and his parents never tried to shelter him or his brother from the reality of the illness. He feels he is more mature than his mates but doesn't regard that as a consequence of coping with a difficult situation. His father does.

When Simon asks if he ever wishes for it to be over, Dylan's reply is fast and emphatic.

"No, because the next day I would want you back."

Twelve-year-old Kieran spends an hour with Simon on most evenings, watching TV or working on a number of model making projects such as one of the narrow-gauge model railways that they both enjoy. The younger son is more likely to express his feelings about his father's illness.

"He occasionally says things like ‘my life sucks because my dad's dying'," Simon says.

In addition to allowing Simon the "hugely rewarding" gift of daily contact with his sons, Michelle comes downstairs a couple of times a week to chat over a glass of wine. With death looking over their shoulders, the pair have developed a dark sense of humour that sometimes shocks their friends, Simon says.

Hospice physiotherapist Pippa is another regular visitor. Having taught Simon about diaphragmatic breathing and what goes on with the muscles in the chest, she now comes about once a fortnight to give him "a good pounding". Massage is a key part of managing his pain.

Hospice volunteer Ken provides a more spiritual kind of pain relief with semi-regular reiki sessions. Simon enjoys his straight-talking personality as much as the treatments, and describes him as really good value.

Hospice helped organise payment, through the District Health Board, for a caregiver to come and stay if Michelle and the boys want to go away for a few days; Simon has used that facility once so far. Although he doesn't need fulltime care – he is usually on his own for six or seven hours a day – he tries to time his marathon trips to the bathroom for when someone else is in the house, and he needs someone to provide meals. Two caregivers share a Monday to Friday roster, arriving late morning with a bagged lunch, and Michelle makes dinner.

Hospice also arranged an agency nurse to sit in his room for a night when Simon had a chest infection. Her presence helped allay his anxiety and allowed Michelle to get a good night's sleep.

The final service that Simon is grateful for – and where he expects to spend his last hours – is the North Shore Hospice In Patient Unit. The Unit provides respite care to give him a change of scene, give his carers a break, or for intensive nursing if required.

"I can go in for a week or longer, and I'm treated like a guest at a 5 star hotel, with 24-hour nursing care on tap. I'm looked after superbly and the food is great," Simon says.

He says Hospice staff have been upfront about their intention to stay involved with his family after he dies and that is a relief for him; he thinks it is for Michelle too.

"All these services are provided at no cost to me. I'm conscious that Hospice isn't fully funded by government and that makes me more appreciative."

Although Simon is in a good financial position and could have managed if the services were not free, he says the real value for him is in knowing all those services exist and having access to them.

"Just as important is the positive attitude and the support mechanism. It's making you – not exactly feel good about needing these things – but saying it's okay to be like this. It's an attitude you don't get in other environments. You're treated as if you matter and you're someone special rather than just another statistic."

"Generally speaking, the public health system has looked after me pretty well, and I have been lucky to have the support of an exceptional GP, and some very good specialists. In some areas of my care, I have sometimes felt like more of a statistic, or a line item in someone's budget, than a person. My experiences with Hospice have gone a hell of a long way to redress that.

"It's about something as simple as someone coming into your room and giving you a cheerful smile."

Written by Lesley Ingham

Simon's illness is caused by a genetic deficiency of a protein called Alpha-1 antitrypsin. This protein protects the body from a powerful enzyme that the white blood cells release to fight infection; without it the enzyme can attack normal tissues, especially the lungs. Abnormal 1-antitrypsin can also accumulate in the liver and, as in Simon's case, lead to cirrhosis.

Simon was a smoker for 20 years and he accepts that his habit hastened the onset of the disease. Every time his immune system fights off an infection his lungs are damaged further, leaving him ever more frail and more vulnerable to another infection.