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Living life within a life

We have a great account sent in via email from Brian about being a full time carer, dealing with the emotional aspects but also reflecting on his thoughts about the experiences.

A mere male’s story

Being a full-time carer, at home, to one’s long-term partner, can be considered a privilege, whether decline and death ends at home or finally in a hospice. Beloved Jane, 81, died recently from cancer. Grief passes, but the memory and celebration of the life of a good person – a good lady, in this recounting – is always with us.

At 80 myself, I was her full-time carer for a year, such a brief period of service compared to what many a family member, caring full-time, are increasingly called upon to undertake. I’m with her, all day and increasingly many times during the nights, as weakening effects from her illness deepen – a baby alarm ensured I was quickly to her side; then ensuring her safety in the shower, re-making or changing her bed, and daily running errands to surgery, pharmacy and for groceries, doing some laundry and ironing, fielding calls from concerned friends. Many of you readers know all too well the reality score. No gardener myself, I did not have the task of looking after Jane’s joy, the wild beauty and abundant profusion of her garden – Susan the proficient professional did that; nor (to me, a mere male) the uninspiring ‘drudgery’ of house-cleaning – hard-working treasure Polish-born Magdelena did that. So THAT was my respite – days off not necessary.

I wrote, I communicated, I enjoyed a scotch and soda. I’m within call of Jane, always. For those who can and do become full-time carers at home, the heart-felt service is its own reward – ego and its puffed-up complaints and occasional refusals arise but are denied effective space. You become aware that in your love and the troubled, pressured, trying moments to which you give your constant best, you are, somehow, beginning to live your life within the life of your declining beloved. You give service willingly but the awareness becomes more persistent of acting in a distinct semi-dream world. Knowing you begrudge nothing to your beloved, you then maybe feel you have to renew that sense of willing service. You are wondering what is truly happening. You are involved in, doing, so many activities you were not doing, just a half-year previous. What is this life, your life, caught up in? Yet, that willing labour of love is given full-time to old, ill relatives by many hundreds of thousands of family home carers in the UK today, out of the six million involved in some form of caring. Such duty is at the very heart of (ancient or modern) man or woman’s compassion. It has been a conscious decision for 8,000 or more years. However, ‘full-time’ today can be a significant hurdle for the potential family home carer. Families are widespread, divorced or otherwise fractured. Increasingly decision-time has to surmount this or other hurdles. It is becoming more difficult for middle-aged or older relatives to ‘see MY way to full-care involvement’ and answer ‘WHY become committed and personally involved, when I can look for answer to a care home?’ Financial recompense for full-time home carers may help, or is no answer, often not claimed. It costs locally, the Council and your family financial contribution, an average £750 a week to see a relative into a 24-hour care home, already £1,000 a week or more for some places. Care homes are closing in surprising even shockingly numbers.

This one story, from beginning to end
The surgery doctor proves wonderfully concerned and involved in immediate response to Jane’s first illnesses, bronchial, pneumonia and lassitude. The burden, on family, is then but light. Eventually, hospital tests are no longer helpful, as the dominance of the cancer is undeniable. As the beloved’s strength and mobility declines, it becomes clearer just what continued full-time service by me or you now might mean. She declines from the courageous lady we knew, alive and burgeoning even at 81, like her flowers in her heart’s imagined perfect wild garden; she faces death in uncomplaining style. She needs my arm, the stick, the stroller. Yet retain her dignity. I suffer too, trying to retain dignity. Hospices, such as Sobell Headington Oxford where Jane was lovingly attended yet dies in just ten days, are few.
Projections say nine million, full-time, part-time, family and professional, will be needed by 20 year time. Voluntary full-time family-member carers are a godsend.

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