As of this blog post, today is valentine’s day. This is the day where people share their appreciation of each other. Where there is a chance to express your love interest or rekindle the flame of love on your current partner. Of course there will be many others there who do not have anyone to share the special day with, but maybe there will come a time when it is there turn.
If you are a carer or have recently been one, I guess you are at least aware of some of the difficulties carers can face. If you are a new to the caring world then feel free to wander around my blog site, which is usually dedicated to carers helping to support those suffering mental health difficulties. My site also touches on other subjects like awareness, events and learning more about mental health and psychology, but for now I want to delve into a topic on what defines a carer.
Well as of this blog, it is new year’s eve and soon it will be 2015. I cannot believe how fast 2014 has gone, but then again time moves so fast if you have been so busy, and yes I have been so busy during 2014. What did I get up to? What were the highlights?
LMHC Xmas Party 2014
On the 18th Of December 2014. I enjoyed the Lewisham Mental Health Connection Xmas party. There were lots of activities, having fun and being part of the community. I met many old and new friends and hope to contribute and help the LMHC in 2015.
Health Watch Lewisham Annual Event
On the 15th Dec 2014 at Lewisham civic suite. I attended the Healthwatch Lewisham Annual event where we got updates on what Lewisham Healthwatch has been up to, plus the 2014 Care Act was explained and we got a chance to influence Lewisham Healthwatch priorities for the coming 2015.
PerPlexUs: MA Applied Imagination Degree Show 2014
On 12th of December 2014. I headed over to PerPlexUs, MA Applied Imagination’s 2014 degree show. This took place over at one of the University of the Arts London sites. I met my friend Adele Orcajada who explained her Yarn work and project, plus I got the chance to visit many more of the other students art projects and participated in their group sessions.
Hidden Gems Exhibition at the SMART Gallery
On the 10th of December 2014, I attended the SHARP gallary which stands for Social Inclusion, Hope and Recovery Project. This is where I got to visited and view many of the mental health trust staff art work. There were lots of hidden gems to find and I enjoyed capturing all the creativity that was held at the gallery including the event itself.
Southwark Healthwatch One Year on Event
On the 22nd of November 2014, I took a trip over to Pembroke House over in Southwark to attended and capture the Southwark Healthwatch On Year on Event where we got to hear updates from the past year where Healthwatch Southwark have been very busy collecting stories of those who use the health services. Healthwatch Southwark heavily engages with the public and those who champion health services.
Lewisham Mental Health and Wellbeing Day 2014
On the 20th of November over at the Lewisham Civic Suite, I attended the Lewisham Mental Health Wellbeing day which was presented by the NHS Lewisham CCG, South London and Maudsley NHS Foundation Trust and Lewisham Council. The MH and Wellbeing stakehold event wanted to concentrate on the service user/survivor aspect.
CarersUK National Summit
On the 13th of November 2014 I attended the CarersUK National. My friend and Carer representative Bridget Jones also attended along with another governor. We heard many updates and issues from CarersUK, plus I was lucky enough to have my blog included in CarersUK newsletter.
The anatomy of melancholy
On the 23rd of October 2014 I was lucky enough to watch an Opera performance describing the form of depression and the anatomy of melancholy. The Opera was a fascinating experience and a joy to watch, every actor kept my attention and there was so much to learn from the performance.
World Mental Health Day 2014
On the 10th of October was an awareness day, this being World Mental Health day, which falls on the 10th of October each year. I managed to visit 5 events from the Lambeth & Southwark Mind stall, to the South East London Arts Network workshop at Horniman Museum. I even attened a series of talks at the GV Art gallery.
Carers Lewisham Annual General Event
Carers Lewisham held its AGM in 2014, this is one the most carers centers I use in order to get support for my caring duties. I have used Carers Lewisham for probably 8 years or so. At the AGM we heard what Carers Lewisham have been up to since their last AGM and we got to hear carers stories, including my own carer experience.
Lambeth Carers Hub Forums 2014
Lambeth runs around about 4 carers forums each year. I managed to attend and capture 2 of the forums. The forums are very large and although not all carers are mental health carers you can at least capture the general field of what carers go through and what issues are raised.
Family and Carers Listening event 2014
The South London & Maudlsey Foundation Trust run family and carer’s conferences each year. I was lucky enough to help plan and participate in the conference where families and carers get the chance to be informed of the work and updates the trust is doing to help families and carers of those using the services. There were lots of speakers, stalls and activities at the conference, I hope to blog about this soon.
Lewisham Mental Health Connection Conference 2014
The Lewisham Mental Health Connection ran another of their yearly conferences and this one took place at the Lewisham Civic Suite on Thursday 11th September. We got to hear from many speakers in the field of mental health and volunteering, there were many workshops and stalls and I got to hear from friends who influence the field of mental health.
Healthwatch Lewisham Best community care
Healthwatch Lewisham run many engagement events and one of them focused on community care. This event was held over at the Lewisham & Greenwich University hospital on the 28th of June. There was many great ideas from the event coming from those passionate about the community and passionate about healthcare. The event was run in partnership with the Save Lewisham Hospital campaign.
Disability MH and wellbeing event
Those who have learning disabilities can unfortunately develop mental ill health, but what things are being done to help those who have those challenges? I was asked to cover the Wellbeing event over at the Maudsley Learning Center situated over at Denmark Hill. This event was huge and practically used most of the building. There were many stalls ranging from health eating, mental health projects, healthy and active lifestyles and also workshops. I was most impressed with the involvement from those who use the services at the event.
Croydon HearUs Celebration 2014
Hear Us is the Mental Health Service User Group which acts as a coordinating body to facilitate, and ensure service users involvement in the planning, delivery and monitoring of mental health services in Croydon. They have gone from strength to strength ever since the group started and this event was to celebrate their archievements. I was impressed with the presentations and stories from those with lived experiences.
Sydenham Garden Autumn Fair 2014
On saturday the 27th of September, I was lucky enough to attend the sydenham Garden Autumn fair and lucky enough the weather was just right for it. Sydenham Gardens is award-winning charity providing gardening, nature conservation & creative opportunities for the well-being residents of Lewisham. At the fair was music, children’s activities, apple juicing and a chance to visit many of their gardens. Sydenham Gardens are also a member of the Lewisham Mental Health Connection.
Southwark HealthWatch Social Care
I visit quite a few healthwatch events and other healthwatches are happy enough for me to promote and blog their events. Southwark healthwatch held the Social care event in 2014 where we got to hear what they are doing for Access to GP services, Access to Mental Health services, Sexual Health Services, specifically HIV and of course Social Care. We also had the oppertunity to influence what needs to improve social care in the borough.
Bethlem Summer Farye 2014
On Saturday 5 July 12-5pm I decided to visit Bethlem Hospital grounds to attend the Bethlem Sunfayre 2014. Each year they hold the Bethlem Sunfayre where there are some of the stalls selling various wares, plus five zones. There were BBQ and music and entertainment stage, Art workshops, ceramic workshops and the Bethlem Gallery plus bethlem Archives and Museum. There was also a Community Centre, Complimentary therapies and cafe. I spoke to Victoria Northwood on the developments of the new Bethlem Museum.
Asylum movie event – London Anxiety 2014 Festival
The Anxiety 2014 is a London-wide arts festival taking place at multiple venues throughout June 2014 and I attened around 5 of the events and blogged, video blogged and captured a few events as well as networked with many of the attendees. One of the events was a documentary on film maker RD Laing’s controversial Archway Community, testing Laing’s conviction that mentally ill people can only heal their shattered “self” in a space where they are free.
Cooltan Arts Summer Solstice midnight walk 2014
Cooltan Arts held their midnight walk, where about 130 walkers gathered for their Summer Solstice Midnight Walk on the 21st June CoolTan Arts is a a mental health and arts charity that believes mental well-being is enhanced by the power of creativity. I had an amazing journey on their 5 to 6 hour walk. We explored the area of Southwark and heard many stories and got to do some activities, however most importantly we learnt more about mental health and made new friends.
Hear Us Wellbeing event
Back over in the London borough of Croydon on Tuesday 1st of July I attended the Hear Us wellbeing event where nearly 200 people, including those experiencing mental health problems, carers, staff and members of the public attended. I took part in some football, visiting some stalls, had some massage therapy and viewed some creative writing.
Refocus on Recovery 2014
On the on 2nd and 3rd of June 2014 the Refocus on Recovery 2014 international conference took place over at New Hunt’s House at Guy’s Hospital. The conference had four themes being, System transformation, Relationships that support recovery, Recovery in crisis and Keeping well in daily life.
Staying strong as a mental health carer
Are you caring for someone? maybe a close relative or friend? Perhaps a neighbour or maybe you are keeping an eye on your work colleague, but what if you have been caring for someone suffering mental health problems? What I mean is if you are being there for someone suffering addiction problems, psychosis disorders, bipolar, chronic stress or others that I have not mentioned.
Welcome to a caring mind blogsite. A site dedicated to a carer’s perspective on mental health awareness and sometimes other health topics and events. On this post I want to talk about carers rights. You see Carer’s Rights Day is on the 28th of November and I am writing this post just before the day.
However, what is a carer? and why is it important that carers need to be aware of their rights?
Well basically a carer is someone who looks after either a close relative, friend or neighbour who are not able to take care of themselves. The caree (the one receiving care) can either be suffering from a physical or mental health problem. Now I am a carer of someone suffering mental ill health, so as a carer I am passionate about what carers have to go through.
Embed from Getty ImagesCarers unfortunately do not have it easy, if you are caring for someone who is chronically ill, then as a carer you will spend more time caring than looking after your own needs. Another difficult situation is carers have to SACRIFICE so much to able to carry out their role. Carers find it hard to work normal hours, carers have to spend a lot of time and energy in their roles, plus carers sometimes have to navigate the difficult maze of confidentiality.
The problems I have pointed out above only make a small percent of what carers have to tackle. So if there are even more difficulties in a caring role, what could make the difference? What could make a caring role more easier to bear?
Embed from Getty ImagesThe answer is carers having their needs supported, plus also having their rights protected. As of this writing we have two acts over in the UK, these are “The Children and Families Act” and “The Care Act”. The Children and Families Act 2014 introduces a system of support which extends from birth to 25, while the Care Act deals with adult social care for anyone over the age of 18. These Acts, which hopefully will become bills will help support carers in their role.
I expect Carers Rights Day to focus on these acts and help explain what rights carers are meant to be given. There are around 6 to 6.5 million carers in the UK and carers save the NHS £87 billion every year!! However looking at carers these days, you would not think anyone would notice how much value carers add to the community. The problem is that carers help save money, but if carers were buying into something then carers would be protected.
Now we have two new acts which looks to protect carers, but this is not the end of the story, how does Carers Rights Day help in carer awareness? Well if you are a carer, you may have already known how difficult it is to get support in order to make your role easier, or make your life easier. Carer’s Rights Day makes it known that carers have a right to information that supports their role, it is also important to help raise awareness of carers rights.
Carers also have the right to have financial support and also be aware of where to get that financial support. This is because carers just do not have the time to work if they are so busy caring, which is something so many people do not understand. Carers are financially poor not because they do not work, but they just do not always have the time.
Embed from Getty ImagesA national carers organisation called CarersUK has released a report which examines how financial pressures affect health, wealth, and well-being of carers. It is worth reading off their site.
Carers also struggle to find information, sometimes its difficult for carers to find the right person to get such information, but What can be worse is if that the carer finally finds that person who may end up withholding information for other reasons. Carer’s Rights day should also focus on how carers can get access to information within the right context to carry out their role.
Time and time again carers can be driven back into a role that is unsafe, unhealthy and unnerving for many carers not only across the UK, but across the world. Carers need to take a step forward and be counted for their efforts. Not everyone has the time and patience to look after someone. Carers should be valued for their skill-set in keeping the family together and keeping the community together. For far too long carers have been denied access to so much support.
Carers Rights Day should also be a celebration for carers across the UK. I for one am going to spend part of the day visiting Carers Lewisham and I am also keen to see what the other carer’s centers are up to on the day.
What amazes me as a carer is wondering what would the situation be for carers if there was no Carers Rights day? How bad would it have to be for carers to continually care for someone with little support, before that carer suffers from bad health themselves?
We can all make that difference on Carers Rights Day. As a carer I urge other carers to blog about their experience of Carers Rights day, I also hope many people attend carers awareness events and pick up information about Carers Rights Day.
Thank you for reading.
Welcome back to another one of my blog posts. I guess I have not done a carers post for a while, so it seems fitting to do a post on the CarersUK National Carers Summit, which was held on the 13th of Novemeber 2014. This was an impressive Summit and I do admit the Clifford Chance building is certainly stylish.
I am sure I may have mentioned CarersUK in one or two of my posts already and you might have actually seen the CarersUK link off my carers site list, but if you are still not sure what is CarersUK all about. Let me point out a bit about the organisation.
Basically in a nutshell CarersUK give expert advice, information and support to all different types of carers, but not only that. CarersUK fundraise, the lobby the UK government, raise awareness of carers and try to support other carers to get involved in the carers movement.
Here is a brief video about CarersUK.
CarersUK have several important messages which I heard a few times at their National summit. These being :-
“You do not have to care alone” or “If only I had known” and many more important motto’s for carers.
Now, I am a member of CarersUK myself and often pop on to their carers forum every so often. I have even phoned CarersUK for advice and even if I did not get the advice I could have hoped for, then at least someone was on the other line who at least listened to me.
So why did I decide to take some of my precious carer’s time and head off the their national summit or AGM? Well there were several reasons.
1. CarersUK is BIG, if you have been a carer for a while then you should have heard of them. I was very curious to see what CarersUK have been up to and wanted to experience what their AGM was like.
2. I also wanted to meet and see how many other carers turn up, I felt if there was a chance to form a network or make a connection then it has to be at this event. I have to be honest and state it is not so easy to get a majority of carers in one place. Why is this? Carers just do not have the time. Time for one thing is a precious commodity for carers, but if I at least shook a hand of another carer or spoke to a carer then at least I felt I was not alone.
3. Other reasons I wanted to attend the event is to gain information and to be part of the special occasion. I could not attend the previous event because it was fully booked, I was not happy about this, but this time I was not going to miss this AGM. I did not specifically go there to ask questions, I felt it was just nice to be there and feel part of the carers movement, it was nice to belong and to not feel alone any more.
There were numerous others of reasons why I wanted to be there, but anyway what happened at the AGM? What could I remember?
Well I met up with long time carer and carer representative Bridget Jones who has been working so hard in the field to spread carer awareness at the mental health trust South London and Maudsley, both Bridget and myself planned to attend the event a while back.
Bridget and myself were so excited to visit the building and hear of any new developments, but in the back of my mind I knew there were going to be some difficult questions asked of CarersUK. For one I have noticed the austerity measures and cuts beginning to bite into social care.
The thing is, carers are trying to protect the vulnerable, which is their loved ones, but such cuts, bedroom tax and austerity measures always hits the vulnerable first.
As I walked into the building and collected my pass, I was impressed by the space and size of the area. The staff were welcoming and very friendly, I even bumped into fellow South London & Maudsley carer Governor Angela Flood, plus I also managed to shake hands with Heléna Herklots who is the CarersUK CEO as she greeted other carers into the auditorium, which I felt was one of the highlights since I know CEOs of big organisations can be distance or very busy to notice everyone.
Eventually Brigdet, Angela and myself sat down to hear the welcome from Professor David Greyson the chairman of CarersUK. He gave a very good speech, but a fair bit of my attention was on other carers and the surroundings. I also noticed some excellent and very challenging questions about the financial situation of carers.
We also got to hear from Heléna who gave a review of 2014 and what carersUK have been up to. I picked up a few points and those were
– How CarersUK have managed to increase their advice service from 2 days to 5 days a week
– Developed more training to NHS Staff
– Produced an e-learning package
– Plus producing leaflets for carers since not all carers have access to the internet
– CarersUK have increased membership and one of the major members is NHS England, which I was very glad to hear
– CarersUK have also made an impact on the Care act by getting parent carers included in the care act.
– It has also been a difficult year, as I have mentioned before. A lot of carers have been hit by bedroom tax, social care cuts and more cuts are on the way.
One thing that kept popping up at the AGM is that a number of CarersUK centers have closed due to limited funds or not being able to adapt systems CarersUK has tried to set up. It is important that carers who have had issues with CarersUK had to be heard and to be honest I expected the tough questions and statements to be raised at the AGM.
We then had a 10 minute break where I spoke the Emily Holzhausen who is the director of policy and public affairs for CarersUK. I have met Emily quite a few times and she has spoken at the SLaM family and carers listening event a few times. I can certainly say that Emily works very hard for carers since it can be difficult to get someone of her stature to speak at such NHS trust events.
I also took time to make a pledge off the carersUK pledge wall and hoped to do just a bit more for CarersUK, but I know my time is very limited since not only am I still caring, but having to hold down a job and push forward carer awareness in South London and sometimes beyond.
After the break we got to hear from more carer questions and I noticed another carer Kelvin Wheelan asking some interesting, but tough questions at the CarersUK board.
There were also questions of the trustee members and stating if they represented carers on their gender and race, which is a very difficult balance, but I did agree with the counter argument that if there were such criticisms then other carers should put themselves forward.
Next to present was Gavin Macgregor Director of communications and Engagement, plus we heard from Rucksana Mahmood who is the local ambassador in Glasgow and a member of the Carers Scotland Committee. We also heard from Denise Lee who is one of the CarersUK Adviceline volunteer who spoke passionately about her role to carers. We also got to listen to Caroline Toll who is another CarersUK ambassador in Somerset.
Unfortunately I could not stay long for the carersUK AGM, but I did get to listen to several poems from Cheryl Moskowitz and also from the short story winner Val Ormrod. As I write this blog now, I can still hear their voices as they read out their stories and poems from the AGM.
However, this blog is not mainly about what happened at the AGM, I wanted to put my 2 cents about the carers movement, I want to put my feet on the side of the fence, but which side?
Well throughout the AGM, I did hear tough questions being asked of CarersUK. The thing is big organisations have big responsibilities and I do notice CarersUK shoulders are broad, but I also know that carers can complain and are not always silent as one may notice.
There are of course millions of carers who are isolated and do not know of their role or do not get any support, but I could not help notice some unfair questions being thrown at CarersUK. Yes, I am sure some of the CarersUK staff get paid well for what they do, but I still feel that job is not the easiest of roles. I also notice CarersUK need support as well, but from who? you ve guessed it, us carers.
It is a shame that carers in the UK have to muster up more energy and determination to help the carers movement, but I feel its not just any carer can take up that role. I feel it takes a carer who has the energy, spirit and heart to give not only care for their loved ones, but also to support their carer organisation or centers.
If I was talking about the banker movement, then yes, it would be far easier for other bankers to support their financial sector, but alas it is us carers having to spread the message.
Its not that CarersUK is forcing people to help in the movement, but I am aware that if we are to be heard on our struggles then we all need to work together, but I am aware that the system does not work for all carers and there will be tough decisions ahead. Carers will be let down and yes CarersUK have struggled to be there for some carers, but I also know resources are hard to come by.
So I guess the side of the fence I am sitting on is to support CarersUK. I feel it does no good complaining about them or blaming them for too many things, which of course some things are clearly out of their control.
Plus thinking back to the AGM, I cannot remember any carer in the audience thanking carersUK for their hard work that they have done so far, although I could be wrong since I had to leave around lunch time.
Overall I was impressed with the AGM and I felt all speakers spoke from their heart, which is what I want to hear most of all. I want to see the passion in the movement, I also want to see carers rally to support not just carersUK, but many other carers organisations as well. I want carers to link up and support other carers. Us carers can support fellow carers by listening, giving advice and pointing to other carers where to find good resources.
I wish to thank all CarersUK staff for running a successful AGM, which kept to its time limit and keeping my interest (which is not an easy thing to do). Us carers need to connected more than ever now because we are at risk due to cuts and the care bill although promising has not been tested in an uncertain society. With big changes in politics, the NHS and the community, we need the big organisations that cannot be so easily ignored. Us carers can usually be ignored because we are not often heard, we just continue to struggle on caring, but rest assured when carers speak, I know carersUK will amplify our voices.
Let our caring voices ring out “We do not have to care alone“.
Welcome back to another of my blog posts. If you do not know already, I tend to blog about caring, especially caring for those suffering mental ill health, if I am not blogging about caring, then I review events on psychiatry, psychology or sociology, if not reviewing events, I help on mental health promotion and also review the odd audio lecture.
However this particular blog post is about the Carer’s Lewisham Annual General Meeting. This AGM took place on the 7th of November 2014 over at the Methodist Hall church in Albion Way.
The Carers Lewisham AGM was about the recent developments Carers Lewisham have been up to, plus a chance to hear from 5 carers talking about their journeys as carers and how Carers Lewisham has helped them.
Before I continue, what exactly is Carers Lewisham? What do they do? Here is one of their videos about Philip the young carers advocate.
Now continuing about what Carers Lewisham does. Taken from their site. Carers Lewisham supports Carers in the London Borough of Lewisham from aged 5 upwards. They provide a range of services including advice, information, emotional support, breaks, opportunities to meet other carers, time out from caring activities such as relaxation days and well being sessions; coping strategies, specialist support for parent carers, carers of people with dementia, carers of people with mental health problems, older carers and carers who are caring for someone who is nearing the end of their life.
So you see Carers Lewisham does a lot for carers and as a carer myself, all this help is appreciated, considering that us carers are often unappreciated at times. I was so pleased with all the support Carers Lewisham has given me over the years, I was more than happy to be one of the 5 carers to do a talk at their AGM.
I will not go into too much over the Carers Lewisham AGM, but what tends to happen there? Well basically we get the minutes from the previous year’s AGM. We then got to ask questions on any matter’s arising. Members are provided with the previous years Annual Report and Audited Accounts from the previous year and we get to hear any other business.
It has been a difficult year due many cuts in services and I am sure a lot of other charities are facing similar difficulties, so Carers Lewisham was no exception. I know they have been working very hard on behalf of carers like myself who also face a tough time almost trying to survive.
However from the past year, Carers Lewisham have still been very busy and have done several outstanding Achievements. They have gained the ‘Center of Excellence Award’ from Carers Trust. Carers Lewisham have also developed their social media communications and their Ebay shop is going strong. Plus they have supported hundred’s more carers and saved carers thousands of pounds of legal fees by helping them with Power of Attorney’ forms.
Carers Lewisham have done all this and more. You might have noticed I often blog about other carer centers, but being since I am from the London Borough of Lewisham, I ll always have Carers Lewisham close to my heart.
After the AGM was finished, the guests and members at the Methodist Hall Church got to hear from 5 carers stories about their journey. I felt so privileged to tell my story and journey, I felt the day was quite special to me, even though deep down my heart aches with sorrow for who I look after.
Every carer who spoke at the AGM about their journey struggled to hold back their emotions, all the 5 carers let the audience know how much their caring role has affected them and how Carers Lewisham has sort to get them through a difficult and challenging role.
Another carer story told was from Kevin Wheelan who told the audience about who he is looking after and how difficult the journey was for himself. Kevin has been active with many organisations and groups. I could say that Kevin is a great spokesperson for carers.
Overall I felt the AGM went rather well and it was with sad regret to hear the CEO of Carers Lewisham Diana Jones is to leave the charity after some months. The reason why? She is compelled to care for her close relatives.
I have known Diana many years and from what I have seen and will remember of her is that smile and putting carers close to her heart.
Here is a video below with some hints and tips from Diana.
Going back to my story, I said the usual things about my journey, but if I have not thanked all the staff at carers Lewisham then I do apologize, I have special thanks for Jey Siva who has helped me through the most difficult periods of my life.
Jey has attended meetings with me and advocated on my behalf, even outside her working hours. You could say both Jey and myself have walk the journey together.
Who knows what the future may bring on our caring journeys, but one thing will always remain is that I will never forget the great support Carers Lewisham has provided for myself.
Here’s to the great memories and adventures to come.
Welcome to another of my blog posts. Did you know that caring for someone can come with some difficulties? There are many difficulties in providing care, but one of those difficulties is stress. Did you also know that the date of this blog post is written on National Stress Awareness day 2014?
National Stress Awareness day 2014 is promoted by many organisations, but the one that initially pushes the awareness campaign is The International Stress Management Association which is a registered charity dedicated to Promoting Wellbeing and Performance.
Well hopefully you have managed to attend some events about stress awareness or perhaps you have read up on what stress can do to people, especially workers or carers. However what exactly is stress?
Basically our thought processes control our body and this can be done at such speed, that our body quickly reacts to our thoughts. The thing is Stress happens when we feel that we can’t cope with pressure and this pressure comes in many shapes and forms, and triggers physiological responses. What are these things called pressure? How can pressure affect how much stress a person can take?
Embed from Getty ImagesPressures come in many form, basically the idea that we should set out to achieve a specific task or number of tasks, but what happens if those tasks become increasingly difficult to do?
Let me go back to the world of carers, many carers find out they have to set themselves a task to provide care with almost next to no support. Of course this is depending on what care is expected from a carer, but unfortunately the tougher the aliment of the caree (person receiving care) then the tougher the caring role.
Embed from Getty ImagesIf the task of caring seems never ending or other tasks get in the way, then the pressure increases, if a specific carer cannot cope with the pressure, then stress increases, if the carer cannot find a way to cope with the stress or no support is available to cope with the stress then the carer can suffer many difficult symptoms.
What are the symptoms of stress?
Stress can affect people differently and this can also boil down to the level of stress. Below is a small list of how stress can affect some people.
Inability to concentrate – If a person worries all the time due to stress, they can find it hard to concentrate.
Seeing only the negative – Stress can cause people to lack confidence, especially if they fail at a task. Many carers often blame themselves when faced with the difficult task of providing care.
Anxious thoughts – One of the most common symptoms of stress, we become so anxious that we cannot decide what task to achieve.
Constant worrying – Some stress can become a roundabout, we want to rid of stress, but worry about stress and eventually it can lead to worrying about worrying about stress.
Moodiness – Some people can become short tempered of moody if feeling stress.
Agitation, inability to relax – Since the body may be in ‘fight or flight’ mode, it can be very difficult to sit still.
Feeling overwhelmed – Another common symptom of stress, especially if a carer is multi-tasking, a carer would feel overwhelmed
Depression or general unhappiness – One of the most common psychological traits that can unhappiness
Aches and pains – constant stress can lead to physical problems
Chest pain, rapid heartbeat – Stress can also affect people physically.
Loss of sex drive – Things that people enjoy can also be affected, too much stress can stop us relaxing or having an interest in many things.
Frequent colds – One of the most common symptoms of stress, which affects workforce heavily, constant stress can affect our immune system, where it becomes harder to fight off infections.
Trouble Sleeping – Stress can keep the body in flight or fight mode that it can be difficult to sleep due to constant worrying.
So can you imagine some of the situations a carer may find themselves in if they take on too much within their role. It might not be so bad for carers coming from larger families, since a another member of the family might take over, but if a carer is on their own then the stress can affect a carer till they feel they can no longer carer any more. Plus coming back to larger families, I have heard some families leave a single member caring for someone because the family refuses to get involved.
Embed from Getty ImagesWell what can be done about this? What should a carer seek to do?
The first thing would be to understand when stress can become a problem for themselves. Here is a video I have made to explain more about National Stress Awareness day.
Other things a carer can try to get done is get a carers assessment, especially in the UK a carer can get assessed to see if their caring duties are are risk of overwhelming the carer.
The next task is for carers to try get themselves respite or a break away from the stress of caring, usually the assessment can indicate when respites are needed, a break might not solve the problems of caring but it at least it is a start.
The video I listed above can also be an educating factor for carers experiencing stress, there are steps where carers can look out for the signs of stress. The best steps are the following
– Take time out to do the things you enjoy
– Watch carefully for how you breathe, try slow down breathing during stressful situations
– Exercise whenever you can get the time
– Connect with friends, family or even other carers
– Try to stay positive.
Stress is such a huge problem for society, no wonder there are awareness days dedicated to stress problems. Stress also is a major problem for the workplace especially the NHS and organisations need to take notice to protect their staff. Even if the stress awareness opportunity was missed, let it not be a one time event, but a nudge to implement stress awareness into policies and protect staff.
Thank you for visiting my blog on carers who care for those suffering mental health problems. I have just come from a carers group in Lewisham, which is run by South London and Maudsley carer support officers and a carers advocate from Carers Lewisham. I felt the group turned out very well for carers as also for myself, even if I did not learnt as much as I could, or felt I could not release any of the emotional turmoil as much as I had noticed other carers going through then that is ok, because I do not feel too alone when I walk the path with other carers facing a similar journey.
On this blog I want to talk about the changing role of a carer. The thing is if you are caring by yourself or in a family, you are still a carer, but the word carer runs a lot deeper than it seems. I am sure I have mentioned this many times, but carers are not usually trained to care when their loved one becomes unwell, this is more the case for carers who care for those suffering difficult but mysterious mental health crisis. I suppose eventually we know that a carer will pick up a few things alone the way in their journey of caring.
I will speak for you
However the road of a carers journey can be long with many winding paths and difficult uphill battles. Now I have been caring for many years and when I look back at my roles, I have begun to realise that I not just a carer. At times I have noticed that I would have to advocate on my loved ones behalf. Why is this?
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Well as you might have guessed that if you are caring for someone who has difficultly with mental capacity, you will find that you may have to take that step forward to contact services on their behalf, which can cause relationship difficulties, because as a carer, you are drifting into the patients rights, but at the same time you as a carer cannot stand to see your loved ones life falling apart.
You as a carer may find yourself speaking up for your loved one on perhaps a ward round, you may end up ringing around to get your caree financial support, you as a carer may end up having to deal with correspondence, but in the long run you as a carer will speak to your loved one on what you feel they may need to get their life on track. Of course whether your loved one listens to you is another thing, but you are advocating on their behalf, unless they have an independent mental health advocate who advocates for them, which can be a good thing, but its not uncommon for even the carer to step in and update the IMHA (Independent Mental Health Advocate) on their loved ones situation.
So ok, we have one of the roles a carer will probably have to carry out or learn on their caring journey, but what are the other roles?
A healing hand
When a carer who is looking after someone suffering mental health difficulties, its only a matter of time before a carer deals with medication, its only a matter of time before the carer looks around for side effects, its only a matter of time before a carer tends to their loved one’s physical health problems. I may have already mentioned this in another of my blog posts, but those suffering schizophrenia unfortunately have a shorter life span than those who do not suffering such devastating mental health problems. The question is why? Could it be that those suffering such a condition are not proactive in seeking help when physical symptoms arise due to perhaps bad life choices? Maybe it could be mental health stigma or perhaps some health professionals may not take the patient seriously.
So we then have a carer whose role will change to a nurse and I do not mean a professional trained nurse, what I mean is that the carer will try and tend towards the carer’s physical health problems. The carer will also try to alert the GP or a health professional when critical symptoms arise. The carer will also check if medication is being taken on time and will look for side affects. Its not like I want carers out there to do all what I have mentioned, but I do realize that many mental health carers go through such roles almost on a daily occurrence.
The words we use can heal
So now we have covered two roles where the carer could shift into, but there are more, I would at least like to cover 3 more roles. What could these roles be? especially ones concerning those who look after someone suffering mental health difficulties?
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The next role is a difficult one which many carers including myself struggle through. This role is when a carer ends up having to be a counsellor to who they care for. Now those looking after someone with physical aliments would have to try some counselling to someone who feels the world is collapsing around them, perhaps because the caree is not as independent at that particular time. However consider what a carer needs to do if they are caring for someone suffering mental health difficulties.
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It is fairly well known that counselling can work benefits for those suffering anxiety, phobias, compulsive disorders, depression and other mental health disorders, but what happens if the service user cannot access a counsellor? We have to remember that the carer may be living with their loved one and there will be times when their loved one will reach out for reassurance.
The carer will have to listen to their loved one, sometimes the carer will have to second guess what their loved one is feeling. The carer will also have to be very careful what they say and try to see what words or suggestions could help their loved one make it through the day.
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This role is without a doubt extremely tough and requires not only some training, but knowing the person you care for, since we all have different personalities, we are all different characters. The mind is a mysterious and wonderful thing, but it has many complexities where so much is unexplored, psychiatrists take years to train, so can you imagine the worry or fear when carers need to explore this role?
To serve and protect
You might frown at this next role, but fortunately it might not be too often a mental health carer needs to carry out the next role, but this role is where the carer becomes a safety guard. Now its not uncommon to hear the word “vulnerable” when you define someone suffering mental health problems. As a carer, your loved ones state of mind may have changed to where they may lack capacity internally, but unfortunately the world externally has not changed, your loved one is still under the same difficult situations where those not suffering mental ill health are exposed to.
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Are you worried about those seeking to exploit your loved ones finances? Then yes you will take on the safety guard role.
Are you worried about fire hazards or if your loved one falls? Then think about the safety guard role.
How about abusive relationships where it might be your son or daughter loosing their mind due to abuse or neglect? As a carer you will take on that role to try protect them.
A Helping Hand
For the last role, it might turn out to be the most common. Unfortunately with this role, it can be used because of carer stigma. The thing is you see, not everyone likes to be labelled, some people feel they are only caring for someone because they are carrying out their duty as a family member. Some feel they do not need that special label because they are doing only what is required of them. Others out there feel the carer label is difficult to get rid of, so this next role is when a carer becomes……a helper.
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With this role a helper does all the roles mentioned above and more, a helper aides, assists and carries out support when their loved one needs it. A helper may stand back quietly carrying out care without trying to disrupt their loved ones routine. You may tend to find helper roles in large families or in old aged carers who would have supported their loved ones anyway.
The many roles of a carers journey
No matter what role a carers definition may be, those roles usually fall under some form of caring. If you are caring for someone, it might be wise to think to yourself about these roles and ponder what information, course or help would be required for you to carry out such roles.
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I do not wish it for carers to over burden themselves with switching from role to role, nor should carers smother their loved ones, because it is not right or fair for someone to sacrifice and care for so long, but the longer someone does provide care, then the more roles a carer will pick up along the way. It is important that carers like ourselves are more than just a label, we are ever changing and our journey requires many skills.
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.
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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.
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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
Heart conditions
Dementia, including Alzheimer’s disease
Depression
Incontinence
Arthritis
Osteoporosis
Diabetes
Breathing problems
Frequent falls, which can lead to fractures
Parkinson’s disease
Cancer
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)
Autism
Cerebral Palsy
Hearing Loss
Haemophilia
Intellectual Disability
Paralysis
Sickle Cell Disease
Spinal Cord Injury
Tourette Syndrome
Traumatic Brain Injury
Vision Impairment
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?
Embed from Getty ImagesHere is a list of mental health difficulties in order to understand what some carers provide care for.
Addictions
Bipolar
Obsessive-compulsive disorder (OCD)
Body Disorder
Post-traumatic stress disorder (PTSD)
Personality disorders
Eating disorders
Psychotic disorders
Mood disorders
Anxiety disorders
Stress response syndromes
Dissociative disorders
Factitious disorders
Sexual and gender disorders
Somatic symptom disorders
Tic 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.
Youngs Carers
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.
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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.
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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.
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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.
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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?
Carer Stigma
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.
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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.
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We also have engagement and participation groups and healthwatch springs to mind, because they play a greater role on access to quality health care.
Some support
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.
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A Caring Mind 