Instinctively caring

They say fools rush in where angels fear to tread, and here I am, rushing along like the old fool that  I am.

Today I want to share some thoughts about something I definitely don’t understand at all yet, however, I can’t try to explain why our type of care works without attempting to discuss it at least once  in my blog’s life.

I have witnessed how clinical institutions have disempowered both their workers and their patients by wanting to put everything in neat little boxes and routines. This concept works wonderfully for computers and cars. I suspect the process would even have worked well if we were just bodies, but the fact that we have minds and souls messes with the science and clock-work routines, which – in the Western World at least – is an acceptable form of care… maybe even the only acceptable type?

People often joke that they get woken up in order to be given a sleeping tablet, but I’ve seen this happen in institutions. Frail bodies get shaken awake on icy mornings in order to have a bed bath before the shifts change. In order to get through the countless forms and documents to be completed, staff in hospital settings are forced to rush through all patient contact so that laborious admin tasks can take preference. These poor staff members hardly even make eye contact with their patients sometimes, as they dare not feel compassion because they realise there is no time for this in the regimented checks and balances of the day.

How lucky are we that we can leave our guests to wake up when they want to. This morning I popped my head in to see a much loved patient fast asleep. She was curled up around our one cat that has the habit of going in to her room and purring softly next to a tumour in her abdomen. She was so comfortable; almost as if she were at home in her own bed. I gently closed the door and told the staff that we are going to let her sleep. I knew she had many visitors the previous day and she was exhausted. It was 9am before she  rang her bell and we took her coffee and a rusk. Sleep is such a wonderful healer and so needed. It suits my staff and our routine to get everyone bathed and ready at the same time so that they can tick that box and move on, but bathing someone who is grumpy, sore and sleep deprived is also not a pleasure, so we let our people sleep. We priorities their needs over ours, which seems like an obvious choice when it comes to patient care, but so often isn’t. I suppose it is the same as a young mother with a baby… you simply sense that a baby needs to rest or needs comforting. With babies and toddlers, you adapt to them and their ever-changing routines. Why would we not generously afford our patients the same respect and understanding?

We think of our relationship with our guests as a dance. As you learn each others’ rhythm and moves, you step on a few toes in the beginning, but eventually you start swaying together without even thinking. As our carers are permanent employees and not contract or agency based, they have the time to build relationships. They learn people’s physicality and needs the same way we learn their love language, body clock, likes and dislikes and personalities.

During training we had the pleasure to work on a very scary Frankensteinish dummy named Suzie. She was the average weight and length of a female human and we practised on her all the time. The first time I worked with a real patient, I actually understood why dear Suzie taught us almost nothing. Add pains, preferences, wounds and mobility issues in to any equation, along with broken hearts, depression, fatigue and additional stress and you have yourself a disheartening challenge. But this is where we are lucky… we know when it is the best time to do the procedures that are hard. We know what joke to make to get a smile. We know which carers are favoured and we have the time set things up to work out in a way that will make things easier and kinder. This way, there is little inconvenience for the patient, plus the carer has a much easier job and gets to have greater work satisfaction. This is not rocket science. This is instinct and using your knowledge of an individual to care for them better.

We are all so different, and of course our journeys to recovery or end-of-life will be different. We simply must then adapt to them and learn to make space for, or even embrace, the differences. Just like healthy people, people who stay with us are either morning or evening people. Some guests lie in bed at night, often with a loved one in the lazyboy next to them, and binge watch Netflix and then sleep late in the mornings. I know one mom who is with us wakes up early as her daughter pops in before work. They have a coffee together and then the daughter pops in later after work again. How special that they can have these precious moments, storing memories, and giving each other strength for the day ahead. This guest has wonderfully long afternoon nap and then and looks forward to seeing her daughter twice a day. Her visiting times at the lodge correspond with absolutely no visiting times on the face of the earth at institutions, but it works for them, and it works for us as both mom and daughter are happy.

At the moment I have a Catholic woman, Rebecca, with us (She is more Catholic than the pope I think –  there is no end to the nuns and priests that come and see her!) Her son is here from Germany. He is very much aware that this will be the last time he will spend with his mom and sleeps in her room holding her hand every night. They have long beautiful conversations and we only ask him to step outside the room so that we can assist her with her daily living tasks. He feels at home here, and I am so grateful for my staff that nurture and love him too, as he is far from his own family and is being drained emotionally as he bears this burden of hard things that must be done.

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In our environment we can do things instinctively. I know that for Rebecca, having her son with her in this time gives indescribable comfort.  I also know that the same will not work for any of my other guests right now. Families are different. People’s needs are different and change as their journey changes. 

We have another guest whose sister visits but almost every time, it causes great emotional trauma for them both. We’ve realised that when the sister visits, she is stressed and tired after fighting the traffic and a bad day at work. We now get her to sit outside for ten minutes, give her a cup of tea and once she is calm and less anxious, we encourage a short visit. Some days we help our guest rather to video call her sister. We do not need to have these “interventions”,  but it works. This is what is needed for them to function. Over the weekend the same sister came and for no reason I could understand, they had the best visit for hours. We did not need to make a hard and fast rule about her visits. We just feel it out and judge it. We read the room and all the people in it. We read and learn about, not just their bodies and physical needs, but their minds and souls too.

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When my father’s end-of-life journey started, we had the choice to put him in a state of the art facility, registered with every department and body one can dream of, but we would not dare steal his dignity or be party to carers being robbed of their compassion and instincts because it is more important for them to complete forms, follow strict routines and protocols.

When my dad started dying he just wanted ice cream, and that is what he got. He still wanted to sit with me, and so we put him on a couch next to my desk and I would work with him by my side, holding his hand often. We were able to instinctively inject Dormincon, Buscopan for the death rattle and morphine for the pain as we saw fit (under the expert supervision of our end-of-life medical professionals). These were new steps in our dance, but the dance partners knew each other, so as my dad needed different medicines I was able to provide them. When we knew the time was close, I climbed into bed with him, lay with my head on his chest and held his hand, just like I have done often throughout the past 50 years. We just lay there surrounded by things we knew, sounds were familiar, until he gracefully slipped away. Everything was so  gentle, almost like this is the way it should be. There was no conflict or coldness. My instinct was that he should die like this… a beautiful death. Do we not all deserve this – to both live and act on instinct when we can, and not be dictated to by boxes and lists that may make us more efficient, but make us less human?

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