Terminally ill County Derry man faces homelessness while caring for his sons

A terminally ill County Derry man is desperately trying to find new housing for him and his sons as he faces homelessness with a year to live.

Darren Keenan from Portstewart has idiopathic pulmonary fibrosis (IPF), a degenerative respiratory condition with no cure.

He was served an eviction notice to leave his property by February 3 but while in hospital he was told he could not return before then due to his condition.

“I can't go back. I got let out of hospital the week before Christmas there and the consultant advised me not to go back.

“I've pretty much been homeless since then. I've been sort of sofa-surfing with friends. It was a nurse from the hospital who is a friend of mine who initially put me up.

“I had to leave then after Christmas so I'm now staying with another friend but my boys are still at the house,” he said.

Darren says he has about a year of life left but a lung transplant from the Freeman Hospital in Newcastle could give him five years.

The list has some strict criteria and his previous housing situation meant he could not stay there and be considered.

He says the heating system in the house had not been fit for purpose for a while and was costing him a fortune to keep his house continually warm. He says he needed the heat to ensure his condition did not worsen leading him into debt.

“Whenever it's cold and damp it affects my cough and irritates the condition. The whole anxiety of the situation irritates the stomach too and it affects my lungs as well. The bacteria from the stress builds up as well.

After a while a new boiler was installed but nothing else had been done to the house.

“When they did put in the new boiler they did nothing to the house at all. So when the heating went on the spores opened up and released. So it left me just constantly in hospital with pneumonia.

“Then the spores, when I breathe them in, exacerbate the whole thing and leaves me coughing and breathless. I end up in hospital with pneumonia quite often.

“When I get pneumonia they tell me I'm putting serious pressure on my heart and that can stop me getting on the [lung transplant] list. Plus the medication they're giving me to treat me is very severe on the liver and if the liver gets damaged I also won't get on the list.”

“The environmental health came out and gave a list of recommendations to the agent to give to the owner. So then he decided to sell and he gave us an eviction notice to be out by February 3,” he said.

The eviction did not come as a shock to Darren. He said he had known the rent was going to go up which would have left him unable to afford it anyway. Even so, he described it as ‘devastating’.

“Whenever I got the news that I was being evicted it was obviously devastating because the state my health is in and the way my boys are.

“It's a big blow and it's finding the money and the energy to do it. I can't get around a room and now I have to move house in the middle of winter.

“But that's the way it goes. There's nothing you can do about that. That's private rent for you.”

Still caring for loved ones

Although he couldn’t continue to live there, the stress of homelessness and trying to continue his life in the meantime may also be impacting his chances of getting on the waiting list.

Darren continues to dutifully care for his family. However this adds both stress and financial burden to his life.

He has two sons and a daughter but his daughter doesn't live in the house. His eldest son has ADHD, volunteers for the Education Board and is an instructor in the Cadets.

His younger son is autistic and is currently undertaking a pathway to work program. Darren drives Keith to this program and anywhere else he needs to go, spending £20 to £30 on petrol daily.

His mother also relies on him for her transport, shopping and medication.

This year Darren has started to pay in for a prepaid funeral plan costing him around £250 a month.

“When I was getting the assessment done they told me that I had to get that in place because I might not make the operation, I mightn't make it two operations in,

“If something goes wrong I need to have this in place. Plus the boys couldn't cope if anything happened to me,” he said.

While Darren stays with friends his sons continue to stay in the house until their notice period is up at the start of February.

Darren is still paying to keep his boys warm in the house.

“I'm just after putting oil in the boiler and now we're out of oil. The oil lasted four weeks with the new boiler. I paid £520 for that 500 litres. I know it has come down a bit since then but now I don't know what to do – whether I should oil in or not. The boys just have electric heaters in their rooms.

Darren cannot afford to continue to rent privately. He was self-employed and lost his income when he got sick. He currently receives a weekly benefit allowance for himself and his youngest son.

“To go private now the average price is around £750 a month in Coleraine. That leaves me needing £1,500. That's the first month's rent and deposit. I just don't have that income.”

Darren is trying to find social housing so his sons will have some stability if he passes.

“There's emergency housing sitting there for emergencies. I'm in a crisis situation but they're not suggesting that. They're just waiting to see because I hadn't got the points.

“The homeless points just kicked in there so I have 12 social housing points plus the homeless points which are worth 70 but that still leaves me very shy of what I need to have any chance of getting anywhere,” he says.

The Housing Executive suggested putting his family in the hospital but Darren says that wouldn't work because he requires 24 hour oxygen which he can't get delivered to hospital because of the risk of fire/explosion.

“I'm also trying to explain to them the way my middle son Keith is but they seem to be just working within the very set criteria they have in front of them – there doesn't seem to be much leeway.”

Path forward is unclear

Meanwhile he has no clear timeline for progression for the lung transplant waiting list.

“Once I get on the list there are 350 people on it so you're prioritised by your need for the transplant.

“There's a small window for transplants. They don't want to do it when you're too young because it might limit your life. But then there's a limit obviously because of the state the condition is in.

“They're saying the window is now for me but with all this stress they're saying that the stomach is spilling into the lungs and they want more investigation into that.

“They said I need to try and stop that from happening but I can't live without stress. How do you do that? I just don't know how to do that,” he said.

While he is out in public Darren must constantly remain vigilant and to ensure he does not catch an infection.

As part of his treatment he takes immune suppressants – leaving him unable to fight any infection.

It also means he can't get vaccinated against any viruses.

“Covid is one of the things they're stressing that if I got it I wouldn't do well. It would add to more scarring.

“I had Covid in July. One of the criteria to get on the list was to lose weight. I was 18 stone at the time and now I'm down to under 13. I was doing all I could at the time and then in July I got Covid and now I'm not fit to do anything – I can't exercise much at all,” Darren said.