Welcome to another blog post from Mental Health Carer Matthew Mckenzie in the borough of Lewisham. This time I want to write about something that is not only bothering me, but carer organisations around the country, in fact I should include other countries since this affects basically everyone across the planet.
Since Carers Awareness Week 2016 is fast approaching, I have decided to release a blog post about the differences between a care worker and carers.
Types of roles
When someone falls ill due to serious or chronic health or mental health problems, usually there are those who support them. These carer roles run into different roles and categories. No one likes to be put in a box or labelled, but the cost of people being unrecognised is far greater.
Basically this is the person who is usually UNPAID to provide care and this usually may fall down to chores such as cleaning, cooking, physical care and emotional support. However the biggest task for a carer is the emotional impact of doing the role and it does NOT often fall down to simple chores as carers are usually the first to witness their loved ones fall prey to serious illnesses over time.
A foster carer is someone who provides care to a caree if no family member is able to provide caring role or they are unavailable. Foster carers are usually paid for the role, but they can also suffer under carer burden. Still carers might not always be fortunate enough to get the choice to give up caring as a foster carer may be able to pass on the role.
Support workers can be in the form of a social worker, advocate and some may help tackle physical health needs.
A paid carer might be in the form of someone providing domestic support, cleaning and cooking, which a carer can also do, but there is a big difference. The carer is paid for that role, although it is true that sometimes carers can get financial support to pay for paid carers to help, but financial support might not always cover the costs.
Protect your identity !!
Although basic in nature, this blog post is aimed at recognising carers who provide care and support to those suffering physical/mental health needs. Make no mistake about it, carers are NOT those coming from nursing homes or support workers and its NOT about doing chores or tasks. It is far more about the title of a carer since its about what family members and those sacrificing their time to provide support those who are too unwell to care for themselves.
Be recognized for what you do
Unfortunately carers are at war, it is sad for me to say this but the system be it the health system, governmental laws or even society does not fully recognise or understand carers. Carers can be pushed out, stigmatized, ignored and isolated and yet as a society we have a long way to go. It is important that if you are providing care to someone close and are unpaid then it is critical you protect your identity. Let no one tell you that you are not a carer without a very good reason, because there will come a time that you will need help in your role if you decide to carrying on caring or relinquish the caring role
Here is where the meat comes on to the bones, this is where I spell out the basic differences between the roles in support of carers, because I have been a mental health carer for a very long time and I now see that I will be championing the role of carers for even longer.
One of them is unpaid
The role of a carer is that they are unpaid. It is all good that a professional carer can provide paid assistance in doing chores or home tasks, but then they are only there for a certain amount of time. If there is no money, would they do this for free? Plus continual tasks still need to be done and carers step in time and time again for such roles. Carers should of course be thankful for paid support, but it is important to note that carers are unpaid and financial support is mostly limited.
Emotional impact of doing something for a loved one
It is not always about doing things for others, an important part of being a carer is the emotional connection carers have for someone they look after. Usually this may fall down to a family member, but this might not always be the case as those outside the family structure might step into that role and it could be a neighbour or close friend.
It is very important that excuses not be made to push carers out of their role because if someone has not been assessed as a carer then it does not mean they are not a carer.
There can be a misunderstanding about what a carer is and this can be placed down to chores and tasks, but unfortunately it is the emotional impact of doing tasks/chores as a carer is frustrated and upset that the person they care for cannot fend for themselves.
Carers are upset as they see the disease or illness slowly take its toil on their loved ones health, no care worker could easily claim they have the same emotional dilemma.
Risk of burnout is higher
Because carers often worry and stress about the health of their loved one, there is a greater risk of burnout as carers struggle to do as much as they can to sustain their loved ones health. Carers can often put themselves last regarding their own health needs because all they care about is to see their loved one continue on for the next day.
Stigma due to role
There are some carers who are proud of their role and others who go very far to ignore their role or even hide it. This does depend on the illness that has affected their loved one. Mental health carers unfortunately can suffer a lot from stigma because others in the community can ridicule the caree for being Mad, Crazy or Dangerous, because of such situations; the mental health carer will wish to hide their role. Plus a caree can often try very hard to hide their illness or ignore it, which can place even more problems on the mental health carer.
System does not fully recognize carers
I tell a lie here, because I do know that there some people in governmental, healthcare and educational roles who work very hard to recognise carers. The problem is that from what I have seen, there are very few of them. Financial pressures on society may have forced lack of support for carers. We also have those masquerading as carers in order to reap the benefits carers can come across be it financial, status and so on. Carers will unfortunately have to throw away their ignorance of their caring role and fight hard to be recognised for what they are.
The Invisible patient
Time and time again we have the caree being diagnosed for chronic health problems, but what is not recognised is that there is another patient nearby the diagnoised patient. That patient is the carer and that carer can also be known as “The invisible patient”.
The emotional and physical toil of caring can wear the carer down and they are often not assessed for physical and mental wellbeing. Carers unfortunately just carry out their role regardless of the impending health problems creeping up on them, even if they are fully aware their own health is failing.
The Completely invisible patient
Even worse their are patients who are completely invisible to the health services, local authorities and research. Apart from a patients behaviour, who can see the mental health of someone? Its practically impossible, so its very hard to tell if a mental health carer is suffering mental distress. Plus what if a family is big, who is doing the most caring and who in that family is taking the credit?
We also have the problem of carers who are not able to speak up due to fears that they would be split up from the family. Yes, I am talking about young carers, it is especially difficult for them since they do not know the complex healthcare system and can be tricked or bullied into accepting changes that are not in their interest. Young carers health needs can suffer greatly because of the problem of not being able to speak up or challenge difficult decisions.
Its all about status
Make no mistake about it, being a carer is actually a highly fought after label. Even with carer stigma, many people would like to lay the claim of being a carer. Why? In the eyes of the community, it is still very noble that people sacrifice their time to sustain the family, because after all this is what community is all about. What helps the family, helps the community, which in turn helps society.
Carers can also get access to support from the government even though it might be small the government does have some responsibility to look after its citizens. Those that champion carers can count on support from many in the community, but such efforts are very hard won. It is very rare that paid carers get the same status symbol as an unpaid carer….after all its about sacrifice?
Who is assessed?
Carers are the ones most likely to be assessed for their role rather than paid carers although there is some checklist paid carers need to go through, but there is a big reason why carers go through a carers assessment and paid carers do NOT go through a carers assessment. This is because carers have needs and to be honest the carer assessment process still needs a lot of work.
Being there for the long haul
People come and go throughout our lives, some people are important and some just pass by without affecting us. The thing with carers is that they are usually in it for the long haul. This cannot be the same for paid carers and I do not always mean to slate them, but when the money dries up, would they continue their role?
It is also known that care workers, social workers and support workers can move on while carers may tend to stay in their role longer and continue to battle it through.
The Advocator role
One of the biggest misconceptions about carers is what they do must always be seen. That means cooking, cleaning, dressing and anything physical. This is a big mistake, since carers often have to advocate on their loved ones behalf, even if they are not really meant to do so.
Carers often have to navigate a difficult system in order to almost second guess what their loved one’s needs are, this goes double for mental health carers who are not fully sure what their loved ones really want.
Basically the difference between a support worker, paid carer and the carer is that most times we have the primary carer. This may fall down to the carer who lives with the patient or their loved one. This cannot be the same for long distance carers, although they may visit their loved ones frequently, it does however depend how far they are from the patient.
As a reminder support workers and paid carers get to go home at the end of the day. Carers do not get that choice and perhaps some are glad to stay and guard their loved ones, which is why they are called the “Primary carer”.
This title is also important if a patient or caree has a big family. It is known for families to place burden on one member of the family and then take credit for the caring role. It is critical that the primary carer be recognised and assessed for their role in order to reduce carer burnout, unfortunately from what I have seen, this is still far off in the future as western society still has a “Me first” attitude.
It might sound selfish to keep mentioning Sacrifice, but when the going gets tough then who is going to see things through? Would it be the paid carer or support worker? I highly doubt it as their interest may fall into funds. When hardship kicks in, then the carer is most likely going to stay until they may wish to stop their role. Carers are known for sacrificing their time, social life, money and health to fight for their loved ones. No other role could easily say the same.
Like I have mentioned before, it is a shame to admit that carers will need to fight for their identity. Carers lack the time and effort to battle it out and get more rights and even more recognition.
A lot of is at stake because once a loved one passes on then who looks after the carer?
The carer has sacrificed so much that no support is left for them.
Good luck on your journey