My Mum. We were very close when I was in my twenties. Thick as thieves. When I had babies, she was there to support me. She was the monitor of extended family members’ birthdays. Never missed. Cards were bought and signed on our behalf. Somewhere along the line, the vivacious woman, interested in life, who dressed up and performed skits at her work leaving-dos, started to fade. Maybe it was retirement and having a handy husband who gradually took over the household duties that meant she didn’t have to do. She stopped walking, except from the car to the shops. The driving stopped too, although she had a sporty car that she was tremendously proud of. She continued to pass her written driving test, but we knew that she wouldn’t be confident or competent behind the wheel. She tells us, of course she can drive, has driven all her life.
Watching the world go by through the window is the new television. The stories are too hard to hear and follow. But she knits. Thank goodness for knitting. Choosing the colours, remembering where she bought the wool, anticipating the new blanket or jumper she will make and creating it and giving it to someone she loves. It is saving her life and her mind as it simplifies.
Too much information or choice creates panic. She says her brain doesn’t work properly; that she is stupid as she reaches for the right word and can’t find it. Yet we find ways to communicate because of our history together. If I am patient and attentive, I know what she means even without the right words. We communicate with concepts and fewer words. There is a knowingness that communicates meaning.
Recently she moved into a residential care home, small and homely. Her room is lovely, with large sash windows and her familiar things lovingly arranged. But it is not home. She lives with strange people she doesn’t know and carers who don’t know her. We are told she gets aggressive and needs medication. Medication that will make her easier to manage, apparently. Get to know her, we say. She may not have a great intellect anymore, but she has a sense of humour. It is her invitation to connect. Spend time with her. We are happy to interpret, just care enough to ask.
The heroine is still inside; she has hope for the future; connection is still possible; she wants a life where moments are worthwhile; enjoyable experiences and skills from the past can be built on; choice is important but keep it simple; her actions and reactions maybe childlike at times so care for her as you would a child, but remember, she has lived a lifetime and is worthy of respect.
“Once we understand why these great people we care for do what they do, then we accept the challenges with a positive outlook. We now have energy to find a solution instead of dwelling on the problem. Behaviours, or more positively called actions and reactions, are windows to a person’s mind, and can bring light to that window.” (Brackley, Jolene, Creating Moments of Joy)