The phone rang. It was late, but my favourite cousin is free to call day or night. Her shaky voice said, "Nick's had a massive stroke, badly affecting the whole of his left-hand side. My dear husband always overworked, and this is the result. He'll need help for the rest of his life.” "Now, without warning, I'm a carer. How am I going to cope? I'm not like all those wonderful people you read about in the papers - self-sacrificingsaints, one and all - who care for their ailing spouses, children and relatives without a word of complaint”, she moaned.
As she was unable to leave him, even for short periods of time, we often spoke on the phone. I watched her life change dramatically from that of a busy fashion magazine journalist in London to that of a home-bound carer. "Nick needs a lot of physical support as well as help with his speech”, she told me. "He's nervous about stepping into the shower unless I can be there to ensure his safety. The doctors say he should carry on walking while he still can but he's lost his nerve. And I'm losing mine, too. I know I mustn't give up but it is such hard work and my patience is wearing thin. I get ratty, then cross with him, which is so unfair. Afterwards I get depressed. What kind of a future is there for me, for us? It can only get worse”, she sobbed.
Over time, she became responsible for everything from car maintenance to finances. She learned to squeeze what little remained of her journalistic work into the gaps between the laundry, household and caring chores, and rare trips to the hairdresser. Minding Nick was her new role in life, which changed her sense of identity. When well-meaning friends asked how Nick was, she wanted to say, "Why can't you ask me how I am for a change?” Then she felt
a stab of guilt for being self-centred. She'd force herself to consider the afflictions of others, those suddenly struck down by a severe illness, young mothers of children with disabilities. They had put aside their own lives to dedicate themselves as carers, so why couldn't she care freely and willingly for her husband? "You know, I just wanted to run away from everything. The pressure was so great.”
Not only had she changed but so had he. The dynamic business man, whose favourite pastime had been playing village cricket on summer Sunday afternoons, was now completely dependent on his wife's support, which he hated. Frustrated and angry for being helpless, he took it out on his wife. "Oh do stop that. Don't make such a damn fuss”, he'd shout, reducing her to tears as she attempted to lift him after a fall.
My cousin and her husband developed a modus vivendi which brought them closer for a while. They did small, enjoyable things together that they hadn't been able to do in their salad days, when they were working. Now house-bound, they would listen to music, watch old movies and read aloud to each other. My cousin gradually became a dutiful, if reluctant, carer. But her husband had to carry the far greater burden.
Unless you are a carer yourself, you will never know what it's like to feel your own life being eaten away as you lose your freedom to act independently. The carer and the cared for have to reinvent their life together. The physical side of caring is not the hard bit: the tough part is the absolute tie, with no way out, no escape.
Reader, believe me, there is very little you can do to comfort a carer. The best support is to listen, listen again and be there for them when they run out of will.