Lessons From My Experiences

The two most important lessons from my experiences are:

I Should Have Told Someone

As I mention in Chapter Two, My Experiences as a Young Carer, my biggest regret is that I did not tell my school friends or adults I trusted what my life was really like. I kept difficult parts of my life hidden, whilst I tried to have normal experiences in other parts of my life.  However this did not address the key problems, and therefore nothing got better. If I could go back in time I would tell someone what was happening. I’m sure that good people would have helped both Mum and I.

Whilst I did not recognise it at the time, I think a lot of my approach to being a young carer was based on what I had seen my dad do. I had seen him make numerous sacrifices in order to provide care. I had watched him struggle alone but never demand support from others. I should have asked for help, even if Dad never did.

I Have Had to Work Hard to Achieve My Ambitions

It was clear that some people expected me to sacrifice my goals and become a full-time carer for my whole life, regardless of what I actually wanted to do. Achieving my ambitions, as a child and an adult, whilst also providing care for Mum has been challenging. It has taken a range of behaviours to achieve success, including hard work, carefully prioritising my time, questioning authority and sometimes breaking rules.

Below I mention some keys lessons from my experiences. I make observations regarding other people’s opinions, people in authority, public sector workers, stress, and my emotions and behaviour.

Other People’s Opinions

Over the years many people have commented on my mother’s condition and my actions as a carer. Some of those comments have been useful, whilst others were completely useless.

The following two tables summarise comments made by others, how their comments made me feel and the usefulness of their comments:

Sensible Comments

Some of the sensible comments I received from other people include:

  • “What you have done for your mother is incredible.”
  • “It is such a shame that you have come home on leave and now you will have to spend all your time sorting out your mother’s problems.”
  • “I think your mother would benefit from being in full time care, and it would relieve the pressure on you.” 

The sensible comments were useful to me because they gave encouragement and support.  The people making those comments were genuinely trying to help and had taken the time and effort to try to understand the situation.

Stupid Comments

Unfortunately I have encountered lots of stupid people who formed opinions and made decisions without some or all the facts. Often they had no knowledge of my situation or the care I had already provided.  Even though they had no experience or understanding of the situation, they still gave an opinion.

These are some of the stupid comments made by others:

  • “If she was my mother, I would not do what you are doing, I would do ….”
  • “If she was my mother, I would provide any care she needed. I am surprised and disappointed you are complaining.”
  • “I would go to Social Services and demand they take responsibility.”
  • “You need to have a strong word with your mother and tell her to stop drinking and eat properly.”
  • “You are her Next of Kin so it is your responsibility.”
  • “I would not let her impact on my life, I would walk away.”

Often other people’s opinions reflected what they wanted, for example, “It is your responsibility,” or “You need to sort out this problem”. Such people simply wanted to pass the problem to me and avoid taking any form of responsibility themselves.

Some people found it very easy to give criticism, but did not recognise that I was trying my best in awful circumstances. Sometimes there were no positive outcomes, just bad ones. Sometimes I had to identify the least worst option and work towards that, even though it was still a bad outcome that could be criticised.  

There were other occasions when people gave opinions simply to make themselves sound important.

People in Authority

I have been on the receiving end of a lot of behaviour and/or decisions from people in positions of authority. As a young carer, I was told what to do by adult relatives, and adults who were health and social care professionals. As an adult carer I asked for help and was refused by adults who were health and social care professionals. As an adult in various jobs, I have been told what to do by a range of bosses.

There are very clear comparisons between adults who spoke to me when I was a child, health and social care professionals who spoke to me when I was an adult, and bosses I have worked for who spoke to me when I was an employee. These are some of the sensible and stupid approaches I have experienced:

Sensible Approach

Some people in authority behave excellently. Earlier in the book I mention the Norwegian General I worked for in Sudan. Jan-Erik Wilhelmsen was firm, fair, and compassionate. He led by example, understood human relationships, accepted reality and planned for it, and always expected high standards.

The good people in authority asked open questions and valued my opinions. They wanted to understand the situation and act in the best way for all involved. They were realistic about the problems and likely outcomes, and they wanted to help and encourage me.

Stupid Approach

I have also seen many people in authority behave dreadfully. I have encountered people who made quick decisions without trying to understand the situation. Others have taken no account of the individuals in their team, or how to behave to get the best results from their team members. Some people in authority have gone as far as lying and cheating for their own personal gain, regardless of the consequences for everyone around them. Therefore don't assume that someone's opinions are correct just because they are in a position of authority.

Public Sector Workers

Some public sector workers (doctors, nurses, social workers, etc) have been excellent in providing help, whilst I feel I have been failed by many others. I have met a lot of public sector workers who were uninterested and unrealistic. Many of them filled in forms without actually doing anything, made judgements without knowing any facts, and repeatedly assumed I was willing and able to provide support without understanding anything about my life. In addition, a lot of them seemed to regard themselves as lone decision-makers, so there was no team approach to providing care for Mum and me.  

I genuinely believe that the approach taken by many public sector workers put my mother at increased risk and put me under increased pressure.

I found that writing everything down helped in getting support from public sector workers. Keeping records makes it hard for people to ignore difficult situations.

Stress

As a young carer I experienced extremely high levels of stress, and this continued during my time as an adult providing care.

Experiencing Stress as A Young Carer

I believe the reasons I experienced stress as a young carer include the following:

  • I spent years trying to manage a situation that I did not want and I had not asked for.
  • I was often coping with multiple stressful issues at the same time.
  • Some aspects of my situation were out of my control.
  • I was completely unsupported by family.
  • I was making considerable sacrifices in my own life.
  • I was expected to place my caring responsibilities ahead of all aspects of my own life.
  • I often received criticism for things that went wrong, rather than any sort of recognition or praise.
  • I received criticism from people who occasionally visited, but left when things became difficult.
  • I often felt that I was being exploited and unfairly treated.
  • I felt that my needs were never considered by anyone.
  • Sometimes, however hard I worked, it was difficult to make any progress.

Experiencing Stress As An Adult Carer

As an adult I have found providing care very stressful because it had a massive impact on my life. Sometimes things repeatedly went wrong despite my best efforts, such as the problems caused by Mum due to her inability to understand the situation. I also had to deal with uninterested professionals who offered no solutions, and I had to deal with the aftermath of cruel people exploiting Mum.

Why Is Being a Carer So Stressful?

I have worked in various jobs that might have appeared stressful, but actually they were nowhere near as stressful as being a carer. For example, working in Sudan involved some very difficult situations, but for a variety of reasons I experienced much less stress than when I was a carer. Ultimately, I had chosen to go to Sudan and I knew I could resign if I no longer wanted to stay. I was part of a team where everyone was working together to complete our tasks, the workload was allocated fairly and everyone supported each other. The workload was manageable because I would do periods of 10 to 12 weeks in Sudan and then have 2 to 3 weeks leave to travel elsewhere and relax. The final key reason why I did not find Sudan particularly stressful was that I and the team were having a positive effect on the ceasefire and we knew we were actually making progress.

I know friends and work colleagues who have said they are going through a frustrating time in their lives. However, that was often when they were doing something they wanted to do, but they had not been able to achieve absolutely everything.  

I would suggest that carers are in a much worse position because they might be doing something they did not choose to do, might not receive any support and might feel they are not making any progress. Depending on the people in their lives, young carers might receive criticism and no praise, be expected to make unreasonable sacrifices, and to provide care over very long periods of time without any rest.

Being a carer can be very stressful. Anyone who tries to tell you otherwise is lying.

My Emotions and Behaviour

I think it is useful to highlight some links between the behaviour of others, and my emotions and behaviour.

My Emotions and Behaviour as A Young Carer

I would summarise my emotions and behaviour as a young carer as follows:

  • I felt let down by my family, health and social care professionals, and society in general.
  • Sometimes I found it hard to dream about the future when dealing with the grim daily reality, which often seemed endless.
  • I was unguided, angry and unsure of my own emotions. My attempts to express feelings were clumsy compared to my peer group, and any emotional vulnerabilities led to anger and withdrawal so I could not be hurt.
  • I hid the truth and I focused on the areas of my life that were under my control. Other people would have seen behaviours like toughness and humour.
  • I looked after my basic needs and either ignored or was unaware of my emotional needs. I became completely self-sufficient at a practical level.
  • I was confident in some areas and I felt very comfortable making decisions.
  • I was a natural problem solver and could analyse situations and suggest solutions without the need to follow procedures.
  • I questioned authority and did not automatically accept what I was told by others in higher positions.
  • It might have appeared that I was doing well, but under the surface I was not.

Negative Behaviours I Demonstrated

Sometimes stress has led to me demonstrate negative behaviours, both as a young carer and as an adult. I have made mistakes and sometimes I have treated others unfairly. There have been times in my life when I have felt consumed by anger. Sometimes I have encountered people who initially did something wrong, but I then responded far too severely.

The sequence of my emotions and negative behaviour normally went through the following eight steps:

  1. I felt that others were being selfish, unreasonable and inconsiderate.
  2. I felt exploited and unfairly treated, which led to stress and anger.
  3. The anger came out, which surprised other people.
  4. The focus turned to my angry outburst, not the cause of the anger, even if my argument was valid.
  5.  The person I thought had done something wrong, was seen as the ‘victim’ of my anger.
  6. I got a telling-off for being volatile and people thought I had a temper problem.
  7. No one in authority tried to understand the background to the situation.
  8. I became even more annoyed, angry and isolated.

I increasingly became dismissive of people in authority. I regarded them as stupid because they could not understand my situation, and I started breaking more of their rules because I did not respect them or their position. However, I was mistaken to assume that everyone in authority was wrong and consequently I made some decisions and broke some rules that I should not have done.

Behaviours That Led To Success

In my life, and my time as a carer, I have achieved many successes. All my successes were achieved by demonstrating positive behaviours such as determination, integrity, hard work, accepting set-backs and trying again. Positive behaviour towards others has resulted in successes in my personal life.

Key Lessons About My Behaviour

When I look back now I can see that my behaviour was hugely influenced by how others behaved towards me. Basically, when I did not receive love or consideration, I did not demonstrate love or consideration towards others. Later in life, when I did receive love, I demonstrated love towards others. This does not mean I can blame my behaviour on others, it simply allows me to understand my behaviour so I can control it.

I have had to accept that when I blamed others for the parts of my life that I was unhappy with, it did not improve the situation, even if I was right and they were to blame. I had to take responsibility for my own actions. I could not blame my actions on my tough childhood. Finally, I had to learn from the past, but move on with the future.