OVER the past decade life has changed immeasurably for Judith Magill and her husband Patrick.
The Flintshire-based couple, who were both teachers – Judith, now 66, head of sixth form at a secondary school, and Patrick, now 68, a deputy head and maths teacher – had grand plans for their retirement but those plans were not to be.
At the beginning of 2000 Patrick was diagnosed with Parkinson’s disease. As a result of the disease, Patrick had to give up work and, soon afterwards, Judith also had to leave her job in order to care for her husband.
Patrick subsequently suffered a number of falls which, unbeknown to them at the time, would lead to his condition deteriorating dramatically.
“The underlying thing is Parkinson’s but the thing that has made his care need so acute is a severe spinal lesion,” Judith explained. “He has no power of movement from the neck down – he is literally unable to do anything for himself.
“The severe problems have been evident over the last three or four years. He needed care before that but it was at a less acute level.”
I met Judith at the couple’s home in Mold. Patrick had been taken into hospital a few days previously and, before going to visit him, Judith had agreed to speak to the Leader in order to highlight the role of carers.
Because of the severity of Patrick’s condition, Judith’s commitments as his carer mean she has very little time for herself.
The couple have five children between them, who help out as much they can, but they all live far away, the closest being in London, and have careers or families.
“They are as supportive as they can be given that they live a long way away and that they have their own careers and, in the case of my daughter, a young family,” Judith continued.
“When my daughter was pregnant there were times when she needed help and I couldn’t go.
I’d have loved to go, to just drop everything but you can’t – you do get that conflict of loyalty sometimes.”
“There’s a huge loss of personal freedom. During the day I really shouldn’t leave Patrick at all and, if I do I have to rush around, get my shopping and be as quick as possible because things can go really wrong in a very short space of time.
“I can’t do things spontaneously with friends. I can organise things in advance.
I can arrange for a carer but, again that takes organising and it is expensive.
“It is amazingly time consuming and that is one thing I wasn’t prepared for – things like ordering and administering medication and co-ordinating all the services that we receive.”
She added: “There are times when you feel more like a service industry than a person. You reach the end of the day and you think ‘have I done anything for myself today?’
“Very often the answer is no. Not that I resent that at all, when you take on that level of care at home you know it’s not going to be easy.”
While she might have very little time for herself, even when she is given some respite, Judith worries terribly about Patrick.
“It is very stressful,” she admitted. “Patrick’s state of health is very precarious and he’s prone to infections.
“When that happens he basically loses consciousness, he has no control of his body temperature which can be very dangerous.
“You are continuously on edge in case something happens. Even when I’m away and someone else is caring for him, the phone will go. I went to see my daughter’s baby recently and no sooner had I got there than I got a call to say that Patrick had been taken into hospital.”
However, the hardest thing that Judith has to bear is not being able to spend her retirement with the man she married as they would have wanted.
“The loss of companionship, all the things one expects to do when you are married and retired, we can’t do,” she mused. “We can’t go out together, can’t cuddle up on the sofa, Patrick can’t really go out in the garden in his wheelchair. We can’t even talk really because Patrick’s concentration isn’t really up to it.
“There is that loss of companionship in the relationship, that’s probably not the case with all carers. If it were just immobility I think it would be easier to cope with.”
It is impossible, for anyone who has not been in a similar situation to the Magills, to imagine what they have had to endure.
However, while Judith herself has had to give up so much, she recognises that it is Patrick who has suffered the most.
“It’s ever such a lot worse for Patrick,” she said. “He had lots of ambitions for retirement, he wanted to paint, to learn guitar and develop the garden.”
However, after Patrick was diagnosed in 2000, and before his condition became too debilitating, they strove to do as much as possible together, travelling to as many places as possible.
“One of the things I would say to anybody who is caring is do what you can, when you can,” Judith added. “And to ask for help because there is help out there.”
The couple do have help from various organisations, including the Marie Curie charity who provide Patrick with an nurse who comes about once a week.
They also have a great deal of support from the NHS – which provides respite care, physiotherapy and occupational therapy among others – of which Judith is very complementary.
“The services we receive are brilliant, we get a tremendous service from the NHS and there are lots of people offering support and help,” she said. “It really is extraordinary how many services are out there. I won’t say it’s (the NHS) is perfect
but we have so much to be grateful for.
“I couldn’t manage without the care package we have and the hospital and respite care.”
One organisation in the region which provides support specifically for the carer is NEWCIS.
Judith added: “It’s strangely reassuring when someone comes to your house and says ‘we are here to talk about you’ and that’s what NEWCIS do.
“It helps psychologically. It’s something you don’t understand unless you have been in the role of a carer because you don’t really know what it involves.
“They (NEWCIS) also have a wealth of information in a co-ordinated form and they have the channels to explore the other possibilities.
They have offered me a lot of help with services I didn’t even know existed.”