Daphne Zackon's Story
Partners in caring: How care staff and relatives can work together to improve quality of life
When we emigrated from apartheid South Africa to England in the 1960’s, my husband Barney left a couple of months ahead of me and our three children, in order to find somewhere for us to live. I mention this because it was the first time in 17 years of marriage that we were to be apart for more than a very occasional night or two. Our life together then continued uninterrupted for a further 34 years, until we were forced apart by the unwelcome impact of his dementia. The time had come, after I had cared for Barney at home for many years, that his move to a care home could no longer be avoided.
The overwhelming feelings I had on his entry into the home were sadness, but also anxiety and fear. Sadness for my loss after so long together, over 51 years, anxiety and fear for his wellbeing - would he be cared for in ways he could happily accept, by people he could feel a relationship with? Could Barney in fact form good relationships with his fellow- residents and most importantly with the people who were now to take over dealing with all his most private and personal needs? Would the staff LIKE him, and SHOW him that they did? (particularly as his powers of verbal communication were lost?).
On the positive side, I would no longer be ‘on duty’ 24/7. I was exhausted and had been under huge strain trying to care for him for as long as I could. I had to learn to ‘let go’ a little. My comparative relaxed frame of mind communicated itself to him (he still looked towards me for mood clues) and he was gradually able to achieve some acceptance of his situation, and of contentment in the home.
This transition was made so much easier and smoother by the way the care manager and care staff clearly and manifestly involved me in his care, and always welcomed me and the family warmly whenever we visited. They also encouraged me to make suggestions for his care, and to spend time with him, often together with them, for instance at mealtimes when we could chat and he could feel part of the group. I could see that he noted and absorbed this rapport between family and staff, and I am convinced it was a major factor in helping him to feel safe and ‘among friends’ and to trust himself to the care staff, as he could see and hear me doing. On the quite frequent occasions when one of the family could not visit but ‘phoned instead, the care workers or nurses would happily take the ‘phone to Barney and actively share in his visible enjoyment at hearing the familiar voice of a son or daughter. This would unfailingly lighten his mood for a while. A small but important gesture!
In particular, the more the staff were able to glean from the family the little details that featured in his past, (the songs he liked, the natures and quirks of the people in the family photos in his room, etc) the better these links were forged, until he reached a good level of contentment; and this is perhaps the main key to good quality of life for anyone with dementia.
Eventually, by the time Barney’s life was drawing to a close, the sensitivity and indeed affection and respect with which the care staff dealt with the situation was absolutely crucial. I was consulted at every step of the way and my wishes respected. My three children and I spent his last hours with him, holding his hand, singing softly his favourite songs, the nurses and care staff coming into the room from time to time, quietly and unobtrusively to gently attend to his needs. I and the family will never forget what a wonderful contribution these dedicated people made; and to this day I feel that on the whole the care staff and the family together made a good team throughout his stay in the home.
Daphne Zackon