My Life As a Carer

‘For so long, it’s like I’ve been living in a dark tunnel that gets narrower,’ says Jonathan.  ‘Now I’ve reached the light at the end and I feel completely blinded by it.’
Jonathan Rhodes has been my sister’s carer for 27 years, ever since she was diagnosed with Multiple Sclerosis as a young woman.  Gillian died last month aged 55.  The theme of this year’s Carers’ Week is ‘My Life as a Carer’.  In my opinion, Jonathan epitomises that statement.  Unlike most men of his generation whose career took centre stage throughout their 30’s and 40’s, his was always side-lined; almost all of Jonathan’s adult life has been centred on caring for his wife.
They met as teenagers in London towards the end of the Sixties and to begin with, theirs was a storybook romance.  Gillian finished university before Jonathan’s work took them to Paris for a year.  On their return to the UK, they continued their respective careers, bought a house and a little later, started a family.  But after the birth of their second child, Gillian aged 28, was diagnosed with Multiple Sclerosis. 
Researching the disease, they discovered that it is so wide ranging that no-one could tell them what the future held.    Some sufferers go into a steady decline; others have remitting waves of the illness; yet more are fortunate in being able to maintain their lifestyles with relatively little physical effect.  We all kept our fingers crossed as Gillian and Jonathan continued to enjoy their lives without thinking too much about what lay ahead and had a third child.
            Within a few years though, it was apparent that Gillian was in a slow but progressive decline.  As the children grew, she couldn’t run around playing with them, nor return to work as had previously been planned.  Before the children reached their teens, she could no longer drive with confidence and became housebound, reliant on Jonathan to do the shopping as well as the majority of the household chores.
            ‘We were lucky in a way,’ says Jonathan.  ‘It was different from a stroke or accident.  With Gillian’s MS, it was a long slow illness, so we could plan for the future.’  Like other young couples they had their dreams of travelling when the children were older, but unlike others, knew that these were just dreams.  Instead, once they accepted Gillian’s increasing limitations, they weren’t profligate with money and saved for what they knew could be difficult times ahead.  Jonathan worked for the NHS, helping people with learning disabilities live independently and had a lot of contact with social services.  He knew what provisions were available and how to access them but also how stretched services were.  And they were both adamant that Gillian’s care would not become the responsibility of their children.  But with her mobility reducing, it became increasingly difficult during the day when Jonathan was at work.   
‘I found it terribly worrying when she was using a frame and falling over,’ he says.  ‘I was terrified for her.’  When she could no longer walk, in some ways it was better; he knew that she would still be in the same position when he came home in the evening as she was when he left in the morning.  But still Jonathan grieved with his wife as she took each downward step – walking stick, two sticks, zimmer, wheelchair, permanent catheter.  Finally, he was grateful when offered the chance of redundancy.
At 48, he was too young to qualify for early retirement, but it was obvious Gillian needed full time care.  The redundancy package paid off the mortgage of their house in the southeast and the move to a bungalow in Weymouth left them with a small nest egg.   They entered their 50’s with the comfort of knowing there was enough money in case of an emergency household bill, or a major problem with the car. 
No longer working outside the home, the first few years on the south coast were pleasant.  Without the constraints of a career, Jonathan took life at a gentle pace and enjoyed taking Gillian for walks along the seafront or trips to friends and family.  Gillian hated her disability but still cared about how she looked and Jonathan remembers with affection his efforts in applying her eye make-up.  ‘How was I supposed to know how to put on mascara?’ he laughs.  Despite her decline, apart from a few back pains, Jonathan found the physical side of caring for Gillian relatively easy.  Coping with the vagaries of a woman’s menstrual cycle was an education, but the personal attention Gillian’s care required didn’t bother him. 
‘Although she didn’t like me having to change her catheter or encourage her bowels to open,’ he says, ‘it didn’t affect our intimacy. It was her emotional well-being that was more difficult to handle.’ 
Gillian’s periods of anger and depression became more acute and extremely distressing to deal with.  The only arguments Jonathan can remember with my sister was when she demanded that he help her to commit suicide.  Eventually, there was also a decline in her mental capacities with the loss of her short term memory, along with increasing bouts of terrifying auditory and visual hallucinations.  Life became more challenging.   In recent years, Gillian’s mobility reduced to zero and even when she found the strength to talk, her speech was so slurred that it was very difficult to understand.   The change in their relationship was desperately sad for Jonathan as he gradually realised that he had lost the woman he adored in everything but body.  They were no longer man and wife, but man and child.  Friends still visited, but as Gillian’s health deteriorated, Jonathan became more isolated and lonely in grieving for his wife.  Though children and family encouraged him to obtain additional help in looking after her, he remained determined to manage alone.  He appreciated the excellent support from his doctor and district nurse but started to recognise his limited quality of life. Gradually he became depressed and wondered how much longer he would manage to retain his sanity and morale.
 Finally, just a few weeks ago, it was bronchia pneumonia that gave them both release and Jonathan is still reeling from its effect; the realisation that he is free and still has time to build a new life. 
‘Here I am at 55, no responsibilities, the kids grown up and independent,’ he says.  ‘But what am I to do?’  For the first time as an adult, he has no fixed boundaries or routine to frame each day.  Despite being fit in mind and body, in addition to his grief, he feels overwhelmed, confused and scared.  Like many carers, despite living in his own home, he has been institutionalised by the demands of his occupation.  He is now dazzled by the limitless possibilities for the future.
It is just a year since the death of my disabled daughter Sophie, and I empathise with Jonathan’s dilemma. I’ve been in that state of feeling laden by the opposites of grief and freedom, guilt and happiness.  But like all ex-carers, over time he will assume their weight, get used to the brightness of living, and go forward.