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Space, ways of working and actualisation

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‘If you don’t know where you are going, you’ll probably end up somewhere else!’

At the back end of the summer of 2016, the logistics, whether done right or wrong, were a part of the past. I had slightly overcome some of my fears, be it through prayer, talking with others but more importantly, (on my own level),  a self-acknowledgement that only I had got myself into this condition. 

Perseverance is a trait I have never lacked, and mixed with self-disclosure you end up with a wonderful formulae. It was now edging on seeing the role of my carer as a God sent gift, and that I should start aspiring to start showing the signs of the nurturing, caring and humbleness, traits my mother displayed with ease through her life.

As I was thinking about those first days of having a live-in-carer three things evolved - all almost simultaneously.

The first was space.

By space I mean the physical space and aura people have. I had lived in my own space, apart from the very uncomfortable hospital, for almost three years. The reason why I feel discomfort in hospital settings is that no-one knows each other’s space, and nurses, doctors and other patients enter and exit your space and this creates a sense of apprehension, After returning from my many trips from hospital, this became a stronger and stronger desire to return home – my own space.

On my selfish side all I had done was give up a room in my house for the carer, and had a hospital bed provided which we had to put into the dining room/lounge. Naturally as this is the main living activity area of the house it imposed limitations on what I could have near the bedside as apart from the bed the room had to be fulfil it’s daily social function. 

Much of space was about me, hence me referring to it as my selfish side. Then I started thinking about the carer. It then struck me that live-in-carers are not concerned about space, given that they generally are more concerned about sacrifice. To give up one’s own home space and to so tactfully enter my space was about sacrifice. A new perspective developed for me here. This person has made a life sacrifice to support me and be at my side and all I could worry about was sleeping in the bloody lounge! Showmanship, acting and thinking that this is just another care approach just flew out of my thoughts as quick as it had entered. 

There was now another realisation, difficult for me to grasp. I had to acknowledge the sacrifices being made on my behalf, when I had messed up my life, and that I should start demonstrating this through being genuine, altruistic and honest.

So for me to grow towards wellness, I had to put all these ‘arrows’ of thoughts together and that the outcome of wellness was not dependent on how good the live-in-carer was, (albeit essential), but how I respected her sacrifice and I delicately opened my space. 

This is where the second ‘thing evolved – ways of working!

This thing called ways of working, is about forming the foundation of the relationship. At this stage the third thing, which was ‘my thing’ started showing signs of prominence. I will cover this later, but it is imperative to note it started somewhere here.

Ways of working is an extension of space in a more tangible, visible and active way.

At the beginning of scoping ways of working live-in-carers read and hold tightly onto their ‘blue bible’. In this rigid folder, (a Care Plan), is a written description of me as a ‘client’ covering every detail of my likes, dislikes, habits, eating, contact numbers, patterns of sleep, toilet and cleaning ability. To mention but a few.

The most important is the medication types, amounts and times of consumption.

I called this a rigid folder, but as you start developing daily activities I realised that this is indeed an important record of change, occurrences, which formed the monitoring of trends, (how many times I had got sick etc.), as this is all essential in reporting to doctors and surgeons. It too has legal status as a reference document. 

Inherent in our ways of working was keeping this document fresh. I have a sense that a carer does not see the day as complete without entering the latest daily events. As replacement carers rotated I noticed that this was not necessarily the case.

It was one of my first acts of letting go. I wanted to make it easy for the carer to use the Care Plan in a way best suiting their own caring style.

Ways of working evolve, and seldom can you sit down and discuss and tick them off. The more rigid the ways of working, the less chance there is for the client/carer relationship to develop and therefore to create unique ways of working.

A sign that the relationship is developing is if new ways of working are formed by client and carer – together!

Ways of working are either rational (relatively easy) or emotional (more difficult to notice and difficult to discuss). 

Rational ways of working:

  • An outline of the day in a life of a client and carer – from waking, medication, meals and finally slowing down to the days end
  • Nutrition contribution and an outline of the meal plan
  • Beyond home support – visits to GP’s, surgeons and tests as well my personal outings and visits from my children and their mother. (She is still my partner but we decided best to live apart once we had lost all our possessions and my condition became obvious).

Once the more relatively mundane ways of working become routine the client/carer relationship matures and sharing goes up a level into the emotional ways of working,

Emotional ways of working:

These are simply about the heart and our feelings. It was about allowing carer personal time for family, calls and shopping but also recognising that as carers they are full time in their dedication to your wellness. I was privileged to have a main carer whose dedication to my growth was personal. Later I discovered the extent of this privilege. Replacement carers, albeit with me for shorter period, placed their own personal needs above mine. Their own agenda’s like shopping, visiting the beach, and spending excessive time on communication devices meant I for long periods had my own space – but like the hospitals space issue mentioned earlier, this created confusion for me about my right of intervention and my escalation options within Agincare. 

Emotionally ways of working became quite solid. My carer knew instinctively when to leave me alone so I can reflect, listen to past music – loud, and cry about the sensitive and nostalgic parts of my life.

In the end, together our emotional ground became solid, noticeable through the amount of sharing, laughing, coaching, shared learning and liking the same type of TV programmes that could bring a sense of togetherness and a platform for even more sharing of opinions and outcomes.

This was one of the most powerful criteria eventually having a major impact on the carer’s capability and my own path toward normalcy. The next blog covers this more explicitly.

It is here that that I cover that third ‘thing’ I mentioned earlier as it’s source started filling my thoughts when I sensed that this whole live-in-carer position was becoming mutually beneficial.

I simply call it actualisation. It’s about starting to think about where is this all going? What does success look and feel like for me, do I have a compelling vision, and what period is covered in this self-actualisation dream?

I started thinking about where I could end up, who will help me get there and given my condition, was this realistic? 

In the personal reflection time my carer so kindly created for me I started writing down my vision. Throughout my previous life I always had a vision, clearly articulated and visual for all to see.

I approached this in 6 month chunks. 

  • Vision up to December 2016 – the single outcome here was simple. I wanted to spend a lovely, family and joyous Christmas with my family. I wanted to be embraced and rewarded for what I had done in the last quarter. The only check point was a medical review in the first week of December. It was with the surgeon that only nine months earlier had given me a two month lifespan.
  • Vision for the first half of 2017 - included nutritional development, physical fitness, enhanced family support, and proving I am well enough for another chance at a transplant assessment. This included showing significant progress on the conditions I outlined in Blog One.
  • Vision for end 2017 – here is where I maximised my actualisation potential. I wanted to be employed, drive a car, become financially more stable but the highest drive I have ever aspired is to: Be the Best Dad! This meant being almost self-sufficient and an active person within society.

One thing I learned when I was actualising being a psychologist years earlier, is that you don’t need to wait for the moment to say now I am a psychologist and behave accordingly. You can live that way by embracing it in the present. So I wanted to be the best Dad, early one, and being seen and recognised as a laughable joyous character long before end 2017.

My 2017 vision was a simple chalk drawing of key milestones and achievements, Simple, visually prominent, flexible and positioned in my own space, used for sharing ways of working and a symbol of my actualisation. Each month there was an activity plan to enable the realisation of the vision.  

Care Pathway Vision

Figure 1. That 2017 Vision

By now, through some messages on facebook and the Agincare website, you will gauge a closer feeling for who I am, and what I do.

Christmas 2016 was the best ever in my life, and I had solely set up and designed the space and the food. Everyone laughed and jeered through the day, and I knew that I was already embracing the ‘Best Dad’ aspiration. 

Christmas Setting 2016

Figure 2. The great Christmas setting - 2016 

Then the visit to the surgeon in early December! 

When I entered the office of the surgeon he said: ‘I can’t believe it’s you, you look….’ and then he lost his words’. He wanted to go back to discuss my condition earlier the year but I was not too interested.

I wanted 2017 to start. With the support and care of a live-in-carer my life was going somewhere, very, very close to the vision. 

I was not going to end up somewhere else!

Careers in Care Start Your Future Now

"If you like it you'll love it - you just have to give it a go!"

Sarah from Brighton

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