Here is another blog by Matthew McKenzie author of “Experiences of Mental Health unpaid caring”. This time I am covering a difficult and compex topic. Caring for someone and trying to maintain the family connection.
If you want to watch the detailed version of this blog, you can watch the video below.
Another awareness video and blog by carer activist Matthew McKenzie. If you wish to watch the video. Please click below.
Addiction is a powerful force affecting millions of lives around the globe. As we approach Addiction Awareness Week 2024, it’s essential to shine a spotlight on this critical issue, emphasizing that while addiction affects everyone, recovery is always possible.
Continue readingAs a person of lived experience in caring for those close to me. I have always tried to advocate that a caring attitude leads to caring communities. We all want a place where we can thrive. We all want somewhere that we are connected and supported. This takes work, it takes energy and yes, it takes a lot of experience.
Its not just about caring for someone, we want a place that cares for us, but we must all chip in. We must all do our bit, but the goal is that we will all benefit.
Caring for one another is something that is a wonderful thing, it is not easy and I know many walk away from the role because the challenge is too much. This is understanding, we should have that choice.
However, the choice gets more expensive if we all decide to walk away from connecting with each other. Such a choice leads to isolation, misunderstandings, fragmentation and certainly poor mental health. We should try to care for our community. It is something that will benefit us in the long run. Its a wonderful thing to learn from each other, but we must chose wisely. We must look at the long term picture and not focus on short easy gains that never last.
Building a caring community is the way forward. For far too long we have become isolated and no one benefits. We need to connect and look for what brings us together. There is no quick solutions, it takes hard work, but together we will all rise.
Community is important, especially a community that cares.
Lets connect.
Welcome to another blog from carer activist Matthew McKenzie. You know, when I first was caring for someone, I did not pay much attention to detail. I just rushed in and tried to care for my mother without much thought to how to support myself.
In the end, I had to reflect back about my experiences. I had to share what I had learned as a carer, so then I wrote a book called “A Caring Mind”.
Still, writing a book is not enough, I had to write blogs and make videos in order to influence and raise carer awareness.
It is so important to stop and think about the long journey ahead. We are not certain of the future, but one thing I can tell many carers is that there certainly will be challenges and frustrations.
I felt it was high time to do a short video reminding others that there are ways to cope when caring. We do not need to rush and exhaust ourselves when providing unpaid care, or at least limit the challenges.
Feel free to watch my short video below on how to cope as a carer.
Welcome back.
Here is a new blog post from carer activist Matthew McKenzie. I write about the challenges, roles and journeys of those caring for someone. Usually the experience of caring for someone with mental health challenges or someone living with cancer.
However, I find that writing is not enough when trying to connect with others. I find poetry a great way of sharing experiences, creativity and understanding.
There can be challenges of using creativity to explain the experiences of caring. It all becomes worth while in the performance, even if things do not go as expected.
Each person finds the poem will mean something different to them. Just as no carer’s journey is the same, this can be included as to how poems can mean something different.
In order to promote the power of poetry, I have made a short video of my ideas, which you can see below.
In life, whatever we experience will eventually pass and things move so fast that we are left wondering what it was all about. If we can leave something behind, express our experiences, share our thoughts of our existance then we can for a brief moment connect with others.
Thanks for reading.
Great news for those caring for someone with Psychosis and Schizophrenia. Kings College London is starting up their free online course for carers, which should be available from 20th of May 2024
When starting out as a carer for a family member or friend, many are not aware of the pitfalls and challenges. We all want to be there for our loved ones, but we do not want to make any mistakes.
The journey as a carer can be fraught with many problems, so it is worth getting as much information and education as possible.
Designed by Dr Juliana Onwumere, the course was designed with carers in mind. The course runs for 4 weeks and is available on the platform FutureLearn.
To access the course check out the link below.
https://www.futurelearn.com/courses/caring-psychosis-schizophrenia
Welcome back to an update of another carers event. This time my blog is on the Carers UK members’ conference for 2024. The carers event took place on the 19th of March 2024 and was held at Woburn House over at Tavistock Square.
The event was sponsored by Regina Blitz, which will continue to support Carers UK’s Care for a Cuppa online sessions
This event is always something that I am looking forward to. Just for those who do not know. Carers UK is a national charity that supports and fights for carer’s rights.
Caring for someone unpaid although is a rewarding experience can also come with many challenges. If you are caring full time, then it is hard to pay your way on other costs, which could be bills, food, travel or even equipment to help provide care. The more difficult the condition of someone you are caring for, the more strain the carer will take on and this leads on to the importance of organisations that lobby for change and raise carer awareness.
At this particular conference we carers who have joined as a member to Carers UK and want to hear what the charity is doing for carers. Such events are recommended to attend because you can network, learn of updates and get a chance to ask questions or state your views.
The Carers UK members conference was also hosted online since there are carers who are too far or were caring and could not travel.
As I arrived at the venue, I could hear classical music and noticed that Orchestra Vitae was playing at the main hall. I felt relaxed and welcomed by the Carers UK staff who greeted everyone and also asked about how my travel to the venue turned out. I had a lovely breakfast at the start of the event and talked to a few people at the Carers UK stands. I spoke to representatives of Carers Scotland, Carers Wales and Carers Ireland.
It was not long before I spoke to carers from my own area where I voluntarly run my carer groups. It was great to spend time with those who understand the caring role. I also met many of the Carers UK staff who were also looking forward to the day. Everyone was relaxed and among friends and comrades.
We heard from many speakers including
• Nick Baird, Chair, Carers UK
• Helen Walker, Chief Executive, Carers UK
• Emily Kenway
• Emily Holzhausen OBE, Director of Policy and Public Affairs, Carers UK
• Claire Morgan, Director of Carers Wales, Carers UK
• Richard Meade, Director of Carers Scotland and Carers NI, Carers UK
There were many highlights of the conference, especially the importance of carers recognising they do have the power to change things, especially with the election coming up. It is so important carers hold MPs to account on what they are doing to help unpaid carers have a better future.
Another highlight was the carers panel where we heard from carers experiences and the impact of the caring role. The panel was led by Emily Kenway who is an author of many books who also researches, writes and speaks about thought-provoking social issues.
After a lovely lunch there were breakout sessions which carers could choose to attend. The following sessions are listed below.
I attended the membership and support for Carers session as being a member, I am often interested in updates provided. We got to hear of the latest initiatives, available online groups and issues affecting carers. We also got to hear from carer member Hitesh Daudia who also is a carer activist and has an excellent website aimed at providing information resources for carers.
I also had a spot at the conference due to being a long standing member of Carers UK since 2013. My role at Carers UK as a volunteer has grown as my profile raising carer awareness has grown. With Michael Shann who is Head of Carers support at Carers UK, I spoke to the audience of the importance of growing the carers network. It is vital that we all work towards growing the carers movement. This could be through sharing our stories, speaking to leaders who have the power to shape our lives, raising awareness or engaging with other carers.
The Conference finished with several songs from Matt Hill who is a accomplished singer songwriter. Matt sung songs that promoted the difficulties carers face. I felt the songs brought carers together as they all recognised the common struggles and felt this event was a place of belonging.
Through our lived experience, it is so important carers are included in the political agenda. We all must work together for a better future for unpaid carers and this can be done through Carers UK.
If you want to be a member of Carers UK one of the biggest national charities fighting for the carer cause, please check out the link below. You can also volunteer at Carers UK in a role that suits your caring situation.
Welcome fellow unpaid carers and carer activists. Did you know at the time of this blog post that it is Young Carers Action Day 2024?
Young Carers Action Day or YCAD 2024 takes place on the 13th of March each year. The carers awareness day is lead by Carers Trust and supported by many organisations across the country
The purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs.
The theme for Young Carers Action Day 2024 is ‘Make Time for Young Carers‘. The theme looks at fair futures for young carers which will be focussing on why caring should not be a barrier to learning.
It is not good news if you are a young carer. Stats say that 1 in 3 young carers struggle to balance caring with our education, this can have a big impact on whether they can get on at school, go to university, or get a job or an apprenticeship.
The impact on young carers can be tremendous. If someone is providing unpaid care, they will struggle to do schoolwork and even when at school the young carer will be tired. All this will impact on the carers school performance, which will have a knock on affect for further education.
It is not just about education, young carers can be isolated and stigmatised, especially if caring for someone with mental illness. Young carers are often bullied and excluded, by only doing what is expected of a caring community.
So what can you do to help make a difference for Young Carers Action Day?
Tips
Every young carer should have the chance to develop their own futures. Young Carers Action Day aims to create a future where young carers do not have to struggle so much.
No one rushes to be a carer, usually most people plan to care for loved ones when they are much older, but life is not often like this. Life is complex, unexpected and has its ups and downs.
You did not expect this day to happen, but here it is. The person close to you has suddenly become unwell, it could be a close relative, a lonely neighbour or a dear friend. It’s different for everyone depend on the relationship, but no matter what the definition is going to be the same. You have become a carer.
What next? What will you do?
There is no hard and fast guide, a lot depends on your resources, support or connections. Caring for someone even depends on knowledge and information, but most of all caring depends on the care given. You know you will probably have to do this, there still is a choice, but are you prepared to live with the consequences?
No one should be forced into the caring role, no one should be that reluctant carer, but that day has arrived. Depending on that relation, you want to be there for someone, you feel you have to try. It might be out of duty, it might be out of love or sympathy. You want to care and you have made that decision.
You are going to care…..
Yet you are not fully aware what you have prepared yourself for. Until you and the person you care for know what the diagonsis is. You are hoping and praying that it is nothing too serious. You have a lot on the line. You do not want that person to suffer their quality of life. You also have plans, dreams and ambitions. All this has been sudden and you just do not feel prepared. You feel anxious on what the future brings, but you want to be there. You want to be there for that special person. It is all up to you because there might not be anyone else around to step in.
Then it suddenly happens.
You are told that diagnosis by a health professional. It does not sink in right away, for some the diagnosis brings relief. Some people know what they must tackle and this is all information. For other people the diagnosis could being heart felt grief and sadness. The diagnosis of the medical illness could be life threatening. It could be a demanding role, but you have already made your decision. You are going to be there, you are going to stay with the ‘cared for’ until as far as you can go.
It is just you still are not fully aware. No one has told you that you are now defined a carer. You think it might be a paid care worker, or a professional carer. You think that you are not doing anything special. You might be the husband, wife, daughter or son. You are just doing what is expected of a close relation, but it is hard.
It is so difficult….
You have to advocate and chase up information for your loved one. You have to cook and clean, check and double check that the ‘cared for’ health is not deteoriating. It is like a juggling act, you are careful not to upset the person you are caring for. They are emotionally struggling with how their life has turned out. They maybe upset that they have to rely on you, then again they cherish that you are standing by and ‘caring’ for them. Yet day by day, month afer month and onto the years, it could get harder. It takes around 2 years before many know they are a carer, but should it take that long?
Should you step back and focus on your own health and wellbeing needs?
Other people are telling you that you need a break, others say you need to know more about what you are caring for. Some people say you should join a carers group. Whatever others say, you being to feel guilty. Is it that bad to focus on your own needs once in a while?
No it is not bad to take time to focus on you.
We cannot care for others if we neglect our own health and wellbeing needs. There is stigma in the caring role, we can all agree on this. Many do not want to be defined as a carer, but that is ok. What is more important is that we get the help and support we need to provide the best care possible. It is not always about caring for others, it is also about caring for ourselves.
If you have found out that you are to do that caring role, ask health and social care services what support you can get as a carer.
Carers need that support as well.
Thank you for reading.
Welcome carers. Another new research project for unpaid carers to get involved and feedback their lived experience. This research is from Emily Oputa who is doing her Postgraduate Research in Psychology. She is studying at the University of Surrey.
Emily would like to interview carers and hear about their experience of caring for a Black person with a lifelong disability including ageing.
If you want to give your views please contact Emily Oputa at eo00455@surrey.ac.uk
See poster below for details.
A Caring Mind 