Who cares for people with dementia? The media headlines suggest it is all done in care homes at great cost to the national purse. In fact, only about ten percent of older people end their days in nursing homes. Most older people stay in their own or a relative’s home, cared for by a zillion unpaid carers- usually family members or spouses, many of them older people themselves.
We were privileged to be invited to a carer group meeting that is set up for carers to share their experience, support each other and get information that might help their situation. I was knocked sideways by the parallel of the tangled nerves in thedemented brain and the tangle of carer responsibilities and emotional connections.
The enormity of the impact on carers’ lives cuts right across career plans, personal relationships, finances but more than anything else it cuts across the relationship between the carer and the dementia patient.
I have my own experience of caring for a mother who extended her eccentricity to include Alzheimer’s. At the time, my older sister found this a great relief that we could now blame mother’s strange ways on a medical condition. At first, I found it impossible to know how much of her confusion was related to her condition and to what extent her behaviour was a deliberate attempt to make my life difficult.
Stepping back, of course I knew her dementia was responsible for her looking at me in sympathy and saying
‘You look exhausted. You should give up that job; stay here for a few days and have a rest.’
This was after I had spent yet another precious Saturday taking her out for lunch, cleaning her flat, washing her laundry, searching for her wallet then restoring her flat into some sort of order after she had dragged every item from every drawer, thrown them across the room, upended the bed and moved wardrobe against the window. After that, a day in the office seemed like a day of rest and relaxation.
It is both rewarding and frustrating to care for someone you love when their own personality seems to have left the room. It is devastating to care for that person who no longer knows your name, nor recognises your face and then behaves towards you as if you are the enemy. Yet the emotional tangle, loyalty built on years of love and the memory of golden moments are compounded by the hope, no matter how ridiculous, that the loved one will in fact return.
So many of the older people we have worked with remember their days of dancing to live bands playing in local dance halls.
‘I miss the weight of a man’s arm around my waist.’ said one older woman.
But in later life, the tango, a dance of love, becomes a shuffle around the search for diagnosis, the wait for social services assessment, the criticism from other family members and the endless anxiety and fear.
Dancing to another tune becomes more than just duty; carers deserve recognition and support and the chance to hold fast to their own needs and desires.