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My condition, fears and aspirations

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Every day is like Sunday, silent and grey. 

In May 2016, this is where my life had got to. I could not distinguish between days of the week, where I needed to be, promises I’d made and whether the sun was shining or not.

I had just returned from two unsuccessful liver transplant assessments at Kings Hospital, London. I was a high risk for a transplant to save me from the obvious. I was now too declining psychologically, emotionally and in thought.

I, before 2011 was a successful Executive with a global consulting firm, highly qualified, earning a six figure salary. I was happily married with a beautiful daughter and a young son on the way. Mixed in there was a four bedroom double story house in a lucrative area of Brighton, and no doubt a two car family.

Before that I was the youngest global General Manager of a multi-million car manufacturer in South Africa, owned two luxurious cars and had built and designed my own house, long before I had turned 30.

Generally up to 2012 you could say my track record and position in life was untouchable.

Then during 2013 I had multiple seizures, with alcohol abuse and sudden withdrawal being a major contributor. I nonetheless was adamant that time will heal its own course. 

By mid-2015, I has diagnosed with severe alcoholic liver cirrhosis, recurrent decomposition with ascites. I was declined transplant listing due to poor CPEX performance, deconditioning, malnutrition, weak hand grip and lack of support. Along with this was weak heart functioning, continual nausea, oedema, delusion, black outs, falling and complete lack of physical mobility.

After the listing failure I was offered drainage support, which I understood later as merely being an acknowledgement that nothing else could be done, palliative care was out and I was provided day care, 30 minutes in the morning and evening. 

In June 2015, the Head of Liver Studies and Herpetology at Brighton and Sussex Hospital told me: ‘I am sorry to tell you this, but your life will last as long as your liver and that will only be a few months – there is nothing much more we can do’.  

Amidst the blur, the silent and grey, I got a call from an Agincare representative to provie some time for an assessment of my condition for NHS sponsorship. I understood this as being just another care company looking for my custom. 

Post the initial assessment I was told I was eligible for live in care.

This is where my fears started surfacing. Some fast, some through reflection, some through talking to others, some from me creating war stories during my periods of insomnia, and by building hypothetical situations as I could see them folding out.

My fear of the unknown: I was unsure as to what this was about, how Agincare had got into this role, how it would work. The thought of more care confused me even more and remained as weeks went by in my ongoing blur.

My fear of space intrusion: It was becoming obvious that Live in Care meant someone staying in my house, becoming a unwanted resident who would limit my autonomy with strict medical protocols, rules and would change the way I lived. After all, I had spent significant effort proving to the palliative care team at Martletts that I was too independent for a care home. I thought this was merely an extension of a care home.

My fear of the process pressures: I was forwarded ‘profiles; of carers from Agincare to make a selection, when my other fears were still prevalent. This infuriated me even more as the person I selected was unavailable. What use was that? I then re-read the carer enforced on me by process elimination. A few words about the person, with likes and a few more lines about experience. This was laden with half a page of carer jargon, and a list of courses completed by the carer that had me questioning the need for a profile. She had done a course in manual handling, was one I selected and thought: Had manual handling not been replaced by forklifts anyway? That is what it meant to me anyway.

‘You will receive a call’ action: This unknown co-ordinator, told me to expect a call from the carer who I had not selected but was qualified in manual handling. When I tried to establish a date and time I was told carers calls depend on the time they have available with their current clients. I prepared some notes around my fears specifically space and the process while waiting for this call. Two days passed, which did not promote my fears even though I was doing a switch to list positive things as it seemed inevitable this was going to happen.

Time can change your mind but also increase fears:  During the two days of waiting I began to view the possibility that having someone around will mean companionship of some form. Time on my own was significant in getting to the Sunday feeling, as my self-management was sporadic, and I was often asked by medical staff about what I do each day and what support I had access to. 

I was lonely, not because I was alone, but the fresh response I had to general medical staff as I did things beyond what I will normally do. I acknowledge that I thrived on the presence and affection from others and found this extremely rewarding. 

What whispers will surface? I always had a view that someone with care is elderly, needy and self-insufficient in the personal aspects of life, like eating, washing and toilet control. 

The most crucial whisper to shut is from my children. There was nothing wrong with Daddy, but why does someone live in his house? Why is he never on his own? My wife/partner too was an instigator of the fears, and as far as my brother and sister goes, they were too far away to influence the whispers, or to have any of their own.

A day before the Live in Carer was due to arrive, the phone echoed with a new ring. I never covered anything on my list, and the unstructured call was over before I could put context to the next day.

In early August 2016 on that Friday at noon, the carer arrived. While struggling to the door I thought two things. One was how much acting was I to do, and how long will I need to put on a show? The second was my own life-long learning, that self-disclosure rather than acting was far more powerful in relationships.

It was not Sunday, that I knew. It no longer felt silent, and it was not that grey anymore.

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Sarah from Brighton

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