Welcome to another one of my blog posts, on this particular post I want to talk about carers. Those who have regularly visited my blog might have some idea what a carer already is, but for those who are new to my blog may wonder “what actually is a carer?” What defines a carer and why do people, families and communities sometimes feel compelled to care?
What is a carer
Someone who looks after another persons needs
Lets say you have known someone most of your life or perhaps someone in your family who has fallen ill. That person tries to do their chores and live their life without much help or support, but after a while it will be noticed by most people that they are struggling.
This is when a person decides to take on some of the responsibilities of that person that has become ill, although the carer’s main focus is to provide help, some security and care for that person.
Not all carers are the same and some have demanding caring duties, while others care on and off for a short time, but no matter what the tasks, they are all carers.
They are mostly not professional carers
When I talk about carers, I am not talking carers who train up on a course and look for people to care for. I am talking about those who find out that care is directed at them due to a family member falling ill, or a neighbour or a friend in desperate caring need. I am talking about parents looking after their children who have sustained serious injuries, disabilities or impairment. I am talking about young carers who are not only trying to understand their place in the world, but also trying to understand why their parents are in need of assistance.
Its not that carers can’t walk away from the care they give, some carers have to make that decision on what they should sacrifice. Carers may have to give up work, education, time and commitments to provide care.
Carers are known as carers because they ARE standing by their loved one. If someone moves on they can still provide some care, but it might not be as demanding as those who are currently providing long term or full time care.
Carers have to juggle many things as if their own life is slightly put on hold while they seek to understand the illness that is affecting who they care for. This is more difficult if the illness happens to be a mental illness or perhaps a devastating physical problem.
Some carers might not have a clue on what they may face and will have to look for answers or support, but we ll get on to that later.
Types of carers
I am not going to make a long list, but I will want to try define at least some of the types of carers. There are always a long list of carers you can search for on the internet, but since all carers are not the same, it makes sense to point out different types of carers.
Carers for elderly
Here we have those who will end up looking after their parents, most do this because they are concerned or worried that their loved ones will end up in a home too far away from them. Quite a lot of older people prefer to stay at home for their own independence, while others fear abuse and neglect.
Some people may wish for their parents to move on, but carers may prefer old aged parents to stay at home. You can also have older aged carers who care for their partners who are ageing. Other older aged carers also may care even for younger people.
Below is a list of symptoms carers may have to care for when looking after older aged loved ones.
List of symptoms these types of carers provide care for
Dementia, including Alzheimer’s disease
Frequent falls, which can lead to fractures
Carers for the disabled
These type of carers can be of any age, but this time care can be demanding depending on the disability the caree has, when I mean caree, I am talking about the person receiving the care.
Types of disabilities a carer will have to care for.
Attention-Deficit / Hyperactivity Disorder (ADHD)
Sickle Cell Disease
Spinal Cord Injury
Traumatic Brain Injury
This is not a full list, but shows what carers may need to tackle in order to provide care. I have two brothers who have Autism and providing care and safety as well as treating them with dignity can be a juggling act, but be aware Autism is a range or spectrum of disabilities.
There are also different ranges of paralysis putting strain on carers wanting to care for those who lack the function to care for themselves.
Carers for mentally ill
Another type of carer who often can be hit pretty hard because they can lack the knowledge of how to deal with mental illness that has struck their loved one. How can you care for someone who may not wish to receive care and yet is recognised by the mental health system as user of the services. What happens if the caree does not wish to engage with services? Where does this leave the carer, what rights do they have?
Here is a list of mental health difficulties in order to understand what some carers provide care for.
Obsessive-compulsive disorder (OCD)
Post-traumatic stress disorder (PTSD)
Stress response syndromes
Sexual and gender disorders
Somatic symptom disorders
Remember this is not a full list.
Some disorders can vary in the type of care needed, while other disorders are devastating and require support not only for the patient or person with lived experience, but also for the carer who can at times be overwhelmed in providing care.
One of the most difficult experiences for a carer is that of a young carer. Young carers can lack decisions on if to provide care or how to cope. Young carers face carer stigma and bullying from other young people who may find it funny that the person is caring for someone with disabilities or other illnesses.
The strain on young carers can be so difficult that often family relationships break down, although relationship breakdown is a common theme among many other types of carers.
Young carers especially need help in supporting their relatives and usually this can depend on how good social services are. One strain could be that pressure is put on the caree to have their child put in some form of care, but this can cause added strain to the child who now lacks family support, but could have freedom to enjoy their childhood. The balance of growing up as a young carer is a very fine line.
What MAKES a person a carer
You do not want to see your loved one hurt physically, emotional
A carer is not a sudden role, usually a carer is formed as a slow process. Since I have been a carer for most of my life, I have come to the conclusion that being a carer is something you become and the role will change.
As a carer you do not wish anyone else to take over your role due to fear that role will not be carried out, but this does depend on the type of care needed. I am now going into controversial mode. In the UK some of the health systems have failed loved ones, the systems designed to protect communities, families and those who fall ill have ended up as part of the problem due to power culture and lack of information share.
The elderly, frail, sick or mentally ill have been put at risk time and time again due to lack of resources, lack of finances, mistrust and neglect and lack of…..care.
I am not going out on a limb to blame the NHS as a whole. Since in the UK this is one of the biggest and best placed institutions, which Britain has to be proud for, we have skilled health professionals working overtime to provide care in difficult circumstances and even then we have carers who fail their loved one due to abuse and also neglect.
However we are always asked this question, the question asked of a carer is who do you trust?
The NHS or care system in any country has to be responsible somewhere, too many stories of failure to provide care and families and communities will mistrust the health system, they will then provide their own care. The primary role of a carer is to not see any more harm come to those that they love.
Carers share time and energy in their role to care
Although carers are put under pressure, but carers noticed that they can share their time to provide some care otherwise a carer would more likely step back and walk away.
There is a threshold where a carer will decide to stop if their caring duties become too much, but carers can see time and energy placed in their role. The resources of time, care and energy must be planned in order to stop a carer from being over burdened, this is not an easy thing to get right and it depends again on what the caree is suffering from as present.
Caring sometimes can be overwhelming, which is why carers need support themselves
No one is a born carer and carers often worry about their own health, be it physical or mental support. Carers who care do not get paid unless its a form of benefit, however caring is almost like a job to most carers, but carers aren’t bankers or engineers, they do not serve the public in that way.
Carers try to keep their families together, families try to keep community together, without the community then what do we have left? That is a frightening thought.
Carers have to emotionally second guess what their loved ones needs are, carers may also have to advocate on behalf of their loved one, sometimes the law may try to support carers, but at the same time block carers access to information (for a good reason), but this can cause conflict in the caring role.
Carers have to do physical chores, shopping, cooking, hygiene care, financial support and keeping the family together as well as sacrifice their own future.
The problem is caring is not something that can be physically traded, care is provided behind doors, caring is just something that is not often seen, so perhaps society does not value carers as they value material things. Maybe this is a human condition, but this human condition has a flaw, because not all in society will be carers, but one day we will all need care ourselves. Think about that for a second.
Carers can be trapped by outside forces who may not recognise them
Carers can be easily trapped, as I have mentioned before no one is forced to care, since caring can be a decision process. Some people can walk away from care, while for other carers the role has become too much and rightly so.
Maybe carers just feel they are not getting that support, but each day a carer will question themselves on how much resources do they have left?
Some people do not wish to be labelled as carers because they feel they are caring out the role as if they are a family member or doing this out of honour for the community. Others prefer that they are labelled supporter or helper, but no matter what they are called, they are providing care and assistance. Some carers are fortunate to have bigger families who can help take turns in the role, while other carers are litarily a one man army digging deep in vast energy resources.
Society is only as strong as the people who live within it and test it. Society is just not the be all and end all, society is changing all the time. The problem is society also must remain a state where community wishes to live within it. We all wish for society to be civil, but the problem is so many things are tied to economics and that includes the health system. Its a numbers game, less resources here and someone has to pay the price and the cost is painful.
Society has rules and unfortunately rules can trap carers. Carers can end up paying the price where they are only trying to help their family or the community.
Carers need to speak up, but not all can speak
Carers need to speak up, if carers wish to be valued for what they do, they need to let others know what battle they face almost every day. Some carers cannot easily do this, while others face the stigma of caring.
I have come across some people who feel carers are just lazy people who should get a real job, and some do have a point, there are other carers who abuse their position, but for most of the time a lot of carers are under huge amounts of pressure. Throughout my caring role I have encountered many organisations in the UK speaking up for carers that being CarersUK or Carers Trust and many more.
We also have engagement and participation groups and healthwatch springs to mind, because they play a greater role on access to quality health care.
If you are a carer yourself or know someone who is starting out as a carer, you are not alone, there is some help to support you on your journey
Going on line to find resources
Its a tough one, but I have always found going online to look for examples of providing good care. Some will say the internet has too much nonsense to make any good idea of what care should be, but use your judgement, compare different sources. Get numbers and ring around, join forums. CarersUK has a forum which offers support, advice and experience.
As for other countries, there usually is some form of carers forums online. If you do not have access to the internet, usually a library or a carers center has some online facilities for carers to use. Use these facilities to also plan your future, since it is important to work on your skillset, since you might not be a carer forever.
Visiting carer centers
You can always physically get support and that is by booking some time at a carers center. I use carers Lewisham myself and sometimes I pop over to other boroughs in London. At carers center you can get emotional support as counselling, financial advice, advocacy and meet other carers. The rule is do not try to cope by yourself.
Speaking to other carers
As I have mentioned before, speaking to other carers is vital. I can say safely say I have written this blog in one sitting, but I have only 10% of knowledge of what is required of carers. Speaking to other carers has several benefits but the biggest is to show that you are not the only one out there, you are not on your own. Carers can also offer advice on starting out on care, they can also offer some emotional support and advocate if need be. The other side of the coin is you can offer advice to carers who are at their wits end.
Information is your currency to your caring role
People often value currency as in money, carers lack financial capital, but money cannot buy love or care. So the thing is what can buy good love or care?
The answer is Information.
Carers should look online, speak to others and do not be afraid to ask. Get information and turn it into knowledge, then apply the knowledge. We are not perfect and the human condition is frail as is also society is not perfect and can also be put under pressure.
As a carer you will make mistakes, you will judge and be judged. You will get angry, you will be pushed aside and lied to and be undervalued, but deep down you can look yourself in the mirror. Money comes and goes, but memories of those who care will last generations to come.
Good luck in your caring journey.