Towards the end of her life my Mum became very frail. We were able to help her stay in her own home for a long time by creating a support network that met many of her wishes and needs.
I would visit after work each day to chat and help her with whatever she needed. One of my brothers spent every Saturday with her doing housework, playing scrabble, and talking. On Sundays Mum either came to us or we visited her. Home care came twice a day to help with personal care, snacks and medicines, daily main meals were delivered Monday to Friday. She also had an occasional visit from a Macmillan nurse; this wonderful organisation continued to visit Mum long after they had finished caring for Dad with his cancer.
Many people would say Mum had a substantial support network. But the gaps between all the visits were long and lonely and they became a focus for her thoughts which made her feel unhappy. She also knew our purpose for visiting was largely to care for her. She saw the visits as functional to get things done. Not the way we had always visited in the past.
It must feel awful to always be dependent on someone else. We often hear, `sorry to trouble you but would you mind….?’
Kerin, Mum’s evening care person, visited every day; sometimes providing practical care but often just being there; talking about the day, her children, the weather – most of the conversation was stimulated by Emmerdale (a TV soap opera set in England). Both avid Emmerdale fans the current storyline would be brought to life by discussing the various relationships and tragedies. Kerin was an excellent care partner and Mum loved these visits more than anything else. Kerin was more than happy to do anything, provide any care needed, but the companionship was what Mum most loved.
Many people living in care homes live with loneliness, dependency and experience the `sorry to trouble you’ feeling, every day. We know that busy care teams are often unable to spend the amount of time they would like with each person.
Modern care teams are asked to focus less on `doing tasks’ and more on `being’ a friend to people who live in care homes. It is an important distinction to make and, when done well, the benefit to the people living and working in care homes is dynamic. Although, this change in mindset takes a lot of learning and planning. The Butterfly Approach to care is without doubt what we all deserve.
Notwithstanding great Butterfly care, where, amongst other things, the people are acknowledged as a priority above care home tasks, there are many times each day when something must be done that simply cannot wait. Someone falls and needs help – the hoist battery is flat, a team member calls in sick at the last minute – with no time to find a replacement, the doctor arrives and needs someone to accompany the consultation, plus a million other scenarios.
Family care partners can be the constant when the care team is busy. Having a friend or relative to become their care partners provides a sense of security for the person living in the home and a sense of inclusivity and purpose for the care partner.
Family and friends are the people who know the important things to think and talk about. They can be the extra someone that makes the day special. They can turn the long, lonely day into something much more meaningful – perhaps by talking about Emmerdale.