The concept of groundhog day has been popularised in the film by that name with Bill Murray as the main character, where he experiences the same day occurring over and over again. This happens for Mum every time there is someone new taking care of her. That could be a new carer, or as with events this week, even with someone new in the kitchen.
Mum has special needs. She is not the person going slowly demented, and waiting to die. She is bright of mind, but has lost muscle in her arms and legs. She cannot use her hands or do anything for herself. She has no grip, and no movement in her fingers and her hands hang from a wrist no longer strong and straight. She can only feed herself by using special cutlery with very thick handles that she is only able to partially grip, and move them using the strength that still remains in her upper arms. This is all because she has a neurological condition – a form of slow progressing motor neuron disease where all her limb muscles are wasting away.
Because she cannot cut anything, she has instructions on the name tag on her food tray for her food to be cut into bite size pieces. I was unexpectedly there when she had lunch this week and the food came all shredded, ie, slightly larger than if it had been grated. Even the peas were chopped up!
Her reaction was one of
- anger, that her instructions about what works to deal with her incapacity had been disregarded. ‘Shredded’ to her is not ‘bite size’;
- hurt, at the lack of respect in not having her needs met, her disability recognised and responded to appropriately;
- frustration, that with a new person in the kitchen, it means that yet again she was not considered, and would now have to exert more energy to get them to do what was needed to manage her limited capabilities;
- disappointment, because food is a rare enjoyment in a bleak world, and this meant she did not enjoy it because she was so upset, and her whole appetite was destroyed by a plate of mush placed in front of her.
She had a few mouthfuls, and left the rest. When the carer came to collect her lunch tray, she accompanied her to the kitchen to advise the new kitchen person that bite size means bite size, not shredded, when you are disabled. It may not seem important to them but it is to her.
In our own homes we seldom have to deal with new people time after time. Perhaps at work we might have to sometimes deal with new people being trained, depending on the job. In residential aged cared there is a constant flow of new people, new carers or relief carers, new nurses, new admin people, new managers, and new staff in the kitchen. Each time it takes energy, a lot of energy, for someone like mum to get to know the new person and interact with them/have them understand her needs. Its mum’s job to train them they let her know, and its groundhog day each time for her. With her special needs it is doubly, triply difficult, as despite the care plan, a new carer is seldom given the time or opportunity to read and absorb it. So when a ‘stranger’ comes to look after mum she has to explain to them every single step required to wash, dress, and organise her. The morning session itself, washing and dressing and making up the room can take an hour or more. New carers are told by others that mum can tell them what to do. With mum’s determination not to put herself at risk of falling, even on a good day with a regular known carer, the morning session is tiring. With a new carer, it is extremely exhausting, and she would have to rest once the session was over.
If that new person is from a different culture, language, or age, as they usually are these days, the lack of cultural understanding exacerbates the problem. More on that another time.
Its a sometimes a natural response when asked to get something to hold it or point to it and ask “this one?” That’s the problem for mum. The carer does this (maybe is even trained to do it), to the point where each “this one?” feels like a tug to pull her off her centre and from her focus, and she needs to repeat or confirm her instruction again, doubling her work… She takes care of the carer rather than the carer taking care of her, despite them doing their best, and needs to reassure them every time that they have heard her correctly. The question itself invalidates mum, says that she is not clear. This creates a psychic and emotional toll on her time and time again.
Is there a better way it could be done? A new person has to be trained, that’s true. In a system that is run on minimal staff, turnover will always be a constant. The solution is to have more people available consistently, more of the time, and pay them more. This would give workers more satisfaction, reduce turnover, and reduce the load on those in residential aged care. This would in turn help those like mum, who is very clear about what she needs and how she wants it be to best manage her disability, though is often frustrated about how to achieve it. I would dread her ‘groundhog day’ of new carers, as she does, sometimes 3 times a day, morning, noon and night.