This post is an extract from a work in progress, a memoir about the traumatic events that affected my family last year. If you have suggestions about how to make it more readable or relevant, please leave a comment below.
I found that looking after my husband following his heart surgery, and my mother during her last illness, was highly stressful even though it only lasted a few months and involved very little heavy hands-on work. The carers of patients who are disabled or demented must have far more arduous and prolonged ordeals to endure. The experience certainly made me appreciate the challenges of the caring role, with its somewhat uneasy combination of duty and privilege.
Studies from the cancer care setting indicate that levels of emotional distress among patients’ partners are similar, in both frequency and severity, to those for patients themselves. This is not surprising, considering that besides feeling sad and anxious about their loved ones, partners are often physically exhausted by providing practical care and running the household on their own.
There is a sensitive balance between attending to the sick person and meeting one’s own needs. Self-help authorities often say “Look after yourself first, or you will have nothing to give to other people”, usually quoting the airline safety message about putting on your own oxygen mask before assisting anyone else. This is sensible advice, but it can be difficult even to find the time for basic self-care, let alone take a break to enjoy something purely for fun or pleasure. One afternoon when Brian was in hospital, I found myself with half an hour to spare between appointments in the city, and impulsively decided to get a manicure. This frivolity gave a short boost to my morale, even though when I visited Brian in the evening he remarked that my bright pink nails made me look like a whore.
When my mother’s health was failing I discovered what a fine balance there can be between providing help and support that is appropriate to the patient’s needs, and seeming to be interfering with their independence and autonomy. Ideally it is best to check what the patient wants, rather than assuming you know what is good for them. But this does not always work, for sick people can make irrational choices, keep changing their minds, or be incapable of expressing their wishes, in which case the carers can only try to be tolerant.
While attention is focused on the patient, the carer’s vulnerability is not always appreciated, and I felt this a couple of times. A friend of the family sent two beautiful hand-painted cards, one for Brian and one for Clare, but did not send one to me nor mention my name on the messages inside. I did not blame her for leaving me out – I might well have done the same in the past – but, being at a very low ebb at the time, could not help feeling a twinge of self-pity. On another occasion, I phoned the hospital about 11 p.m. and asked to be put through to the ward where my mother was dying. The ward nurses had told me I could ring at any time, but the telephonist was reluctant to make the transfer, and sharply reprimanded me for calling after visiting hours.
Leaving these minor incidents aside, my relatives, friends and healthcare professionals were tremendously helpful to me both on practical and emotional levels. Research consistently shows that good social support is an important factor in buffering the adverse effects of life events, and my experience showed me that this is very true. I will always be grateful to those who took time to listen while I confided my troubles, brought meals to the house when I was too unwell to shop or cook, gave lifts to the hospital when I was too unwell to drive, or sent supportive emails from overseas.
My main confidant and support was Brian himself, and though we were close before his illness we have become even closer since. Finally, as an animal lover, I must also mention the comfort provided by the presence of our three cats.