Monthly Archives: June 2014

Lewisham Healthwatch & Save Lewisham Campaign Community Health Care Event

On the 28th of June, I attended the Lewisham Healthwatch &  Save Lewisham Campaign “Winning the Best Community Health Care” Event.

Healthwatch Event

This took place at Lessof Auditorium, Lewisham Hospital. The event was mainly for interested parties, where we had representatives from SaveLewishamHospital Campaign, Lewisham Carers, LeSoCo, Voluntary Action Lewisham, Lewisham’s Health & Wellbeing Board, some of the Lewisham’s Councillor’s, Lewisham’s Young Advisors, Lewisham Disability Coalition and many more.

As you can tell from the list above, many groups and organisations attended, but What is Healthwatch?

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Healthwatch

Healthwatch is the national consumer champion in health and care. They have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services.

You can find more about Lewisham Healthwatch below.

http://www.healthwatchlewisham.co.uk/

This event was also a joint event with Save Lewisham Campaign

Save Lewisham A&E was set up by local organisations, residents, Dr’s, nurses, therapists and patients because they do not believe the Tory-appointed Trust Special Administrator should jeopardise the health of South Londoners to pay for debts that were caused by years of political mismanagement.

You can find out more about them below.

http://www.savelewishamhospital.com/

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Going back to the event. On the day we looked into what makes community Health care brilliant, identified healthcare that needs to be cherished to ensure future community health care.

We also learned from people’s stories about community healthcare, which gave us ideas in order to build a vision for what the best community health care could be for Lewisham.

You might have probably already guessed it, but this blog is based in the UK and mentions many UK mental health organisations off my links page. I often try to go to mental health or health community events or meetings and the “Winning the best community Health care” event was the latest.

I think we had around 40 or more turn up to the event to give their ideas about what makes the best community health care.

There are cuts coming to the NHS and these cuts will create many problems, Perhaps no one will receive the quality of health services like they did before. There is a risk that privatization will not hold patients interest at heart, plus the cuts won’t stop at the NHS, it will hit quite a lot of voluntary organisations which already are under pressure from limited funds.

Lewisham Hospital had a campaign to save the A&E, which was a long and hard fight that ended in success, but even still the hospital is under threat.

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Recently the six Clinical Commissioning Groups which commissions or buys services for the doctors are running their plan for integrated care across south London. There is a lot of planning and consultancy the will be needed.

So how do we tackle such problems?

At the event we needed to define what is community health care. We have to understand that quantitative health care does not make qualitative community health care. Before this event, Lewisham Healthwatch collected over ‘100’ stories from those who used community health care in order to discern the very qualities of health care.

Throughout the day we as a group worked on declaring a vision for the perfect community health care system, we also had several members in the group produce their own ideas about burning issues for enhancing community care, which was followed by a brainstorming session.

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So how did I think the event went?

To be honest, before I turned up to the event, I was not sure what to expect, but by the end of the day I could say that there was so much I learnt. I felt empowered giving my views as a carer within such a group, not only because I use carers Lewisham (which is a voluntary community service) but because who I care for also uses a lot of services.

The event also gave me a lot more opportunity not only to participate, but also to have fun in participating, plus to gain further insight into the problems of the National Health Service, which faces its greatest test ever since it was formed.

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There is fear of the unknown that if such services are cut. A lot of people are worried the more things are privatized then value for money will be lost, community will be lost and quality of service would be at risk.

Not only is it vitally important Healthwatch runs such events, it is also important that the public give their views on the services they use. They do not have to always complain, the public can just make a statement or congratulate on a service.

I hope Healthwatch continues to do a vitally important role engaging and obtaining views from the community in future for the community.

Caring is being there for someone

Here is another skill set for carers which I want to raise on this blog post. Oddly enough this one is the most common that is used among carers.

There are times when some of the most simple things in providing care is all that is needed. You do not have to spend large amounts or money or lots of energy. Sometimes you do not have to say a word. If you are a carer or have been a carer then you perhaps already guessed what I am talking about.

Being there…..

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If you felt you have done nothing or not provided much of any care and yet you visited your loved one, then at least you are providing some sort of care. This is done by just being there.

If you feel you are the only one in a large family providing care to someone, then rest assured you are being there for them.

If you feel a family relationship breakdown has pushed you away, then at least you have been there for them.

If you speak to someone on your loved one’s behalf then that is still classified as being there for them.

Even phoning, writing a letter or asking if everything is ok, is still being there for someone.

You know who I am talking about. Yes! Its you.

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If you have done any of the above and feel down because things are not going as planned, then at least you have been there for someone. Being there is half the battle, because you have turned up to be part of someone’s world, unfortunately their world is falling apart perhaps due to mental health problems, but you have and will be there for them.

We are sometimes placed in difficult situations where in today’s society we are told that we should be there for ourselves. We should be independent, we should move on and get a life and not spend too much time or energy on our loved ones.

Carers can be often told that they should have their own families, if they are caring for a relative, who may be deemed as a burden.
Carers can be told that they should find another partner if the one they are with is suffering mental health difficulties.
Carers can be told that other services will take care of the situation if their loved ones health deteriorates.

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I can imagine that perhaps there are some very good reasons for carers to move on, but there are times that “being there” for someone especially through the hard times is a noble thing.

In this society you may not have to look far, when someone ends up cutting their losses and runs at the slightest hint of their loved ones failing mental health. People do it all the time, we all have our limits. I am not saying those people should be despised, but what I am saying is that carers caring through difficult situations should be acknowledge for being there.

Time and time again, I hear of carers having to cope on their own. I have heard of carers with large families left to handle caring for their mother, father or relative, because that’s the way it has always been.

 

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You often wonder to yourself if such carers should demand help from their families, you wonder if such carers are a pushover or too weak. Yet, the same situation is that no one wants to be “burdened” in providing care.

No one wants to give up time at work because they need the money.
No one wants to sacrifice time with their own family or friends.
No one wants to experience sadness or anger, because those feelings are painful.

This makes sense doesn’t it? Why would anyone want to give up their time?

Because of a simple reason……They care!!

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Carers care because they may be related to their loved ones, who they have known ALL their lives.
Carers care because they hate to see the person suffer so much.
Carers care because they imagine what if they were ill, who would be there for them?
Carers care because they have the strength and energy to carry the load.
Carers care because they WANT to be there.

If you have been there or are being there for someone, you know what I mean. I do not have to tell you that “being there” is so important, but carers can be worn down by the stresses of their role. Society does not always seem to value carers and so I find myself writing this blog post to highlight a simple act that can make society more caring.

Being there…..

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There is a saying which goes like this “A person without a friend is like a life without a witness”. Can you imagine what it could be like when someone suffering a mental health condition becomes isolated? All too often this is the case.

There are no witnesses, no one to see what is happening to them or anyone share the pain. I am not saying all carers are the same as we know some carers can be the “very problem” of their loved ones situation. However it must be noted that if you care for someone, you wish to be that witness to share their pain or happiness. You wish to see what is going on, you wish to make that difference.

You wish to be there for them…..

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If your caring role has come to an end a long while ago, take heart that you have been there for someone you care for.

The situation might have been enjoyable or it may have been painful, but take heart that you tried. You were there for them.

Being there for someone is just the start of a journey where you can then be able to assess the situation and carry out more of a caring role.

By being there, this can lead you to try understand what the person is going through, you may not need to say anything, you can just listen. By being there you are a vessel of information which you can share with health professionals when the patient can no longer communicate.

There will come a time when your loved one does not want you to be there, but that is ok, you may need to give them space. Sometimes you have to back off to give yourself your OWN space.

If you have been there for your loved one by sacrificing your time, then it is important for you. It is your decision and perhaps it did not work out for the best, but you did it, you were there for them.

We may have our own families, or close friends. Perhaps a neighbour we often talk to. We just cannot see it, not so easily. We wake up and wonder about our own problems, perhaps rush off to work or pay the bills to survive and achieve our dreams. Yet, there will be a time, since time is the ruler of many things. It need not be mental health, it can be physical health. Just think to yourself, when the time comes…..will you be there for them?

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When a time for acceptance is here for Carers

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As a carer of someone suffering mental health problems for over 10 years and counting, I have gained quite a lot of knowledge on my carers journey. The journey has been long and hard, but by far the journey is not over.

 

On my travels I have found that I am happy to share many things with other carers out there and here is something that I have noticed in my time as a carer.

Acceptance……

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This is something that carers are often quite good at, but on the other hand something carers can also struggle with. I hope this particular blog post lays down a path and some signs which other carers can at least think about . Here are some questions this blog post tries to answer.

1. What is Acceptance?

2. How can a carer who is caring for someone suffering mental health difficulties be able to make use of acceptance?

3. Why are carers good at acceptance and what makes acceptance so difficult for many other carers?

1. What is Acceptance?

I am sure if you are a carer you probably get what I mean about acceptance, but if you are not so sure then I am happy to explain.

Acceptance to me is when you finally realize the situation you are in, you may accept someones condition, you might accept your role and you may accept that you are in for a tough journey.

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However acceptance is by no means something that is weak, you as a carer could accept that you will not give up, you can accept support or accept that you wish not to provide any care or support.

Without a doubt there will come a time when a carer will need to accept many things in their caring role. I guess the most difficult period for acceptance is when you know that you can do no more for your situation, which is something many carers fear.

I am not a master in explaining the meaning of acceptance, I feel I am just laying down the line as I understand it. Sometimes a carer will have acceptance forced or suggested upon themselves, while other carers will ask for acceptance, but the word “acceptance” is very important in a carers world or journey.

One of the most important uses of acceptance for carers is when they have realise that they have started their role as a carer and that they seek to find knowledge on what a carer really is. A carer will then look to modify time spent on their own interests and will give up things in order to provide care.

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Acceptance I find is about recieving things, recieving how the situation in your role will pan out. Perhaps not being able to change too many things and just take the cards you are dealt with for the present.

2. How can Mental Health carers make use of acceptance?

There is no easy way to tell when the time is right to to accept things, each carer has their own strength and weaknesses, each carer has their own limits or reasons for doing things. I do not want to stray into the area where I say to someone that you are caring wrong and that another carer is doing things right. We all know the time when we have to accept things in our caring role.

The most important thing I feel is to stop and think about your situation from time to time and perhaps think in your mind, what is it I have to accept? What can I sacrifice or what should I make use of?

I feel that sometimes if we as carers do our caring role automatically without much thought or use of our minds about our caring role, then we have little idea on where we are heading. Sometimes acceptance can be very painful, the time when a carer feels they need to stand back from providing care is hard to deal with. However us carers need to think with our minds that there are things to accept, but just knowing when the time is right.

Make no mistake about it, no one is perfect and this goes for carers who are not trained in a carer role. Providing gradual care may be thrown at a family member or friend before the person has much time to react.

I expect mental health carers to make many mistakes along the way, but that is ok, you are learning and you have to accept this. Do not feel gulity of providing care and do not feel guilty on second guessing things since caring is a very emotional role.

A carer can make use of acceptance as the following.

  • Just being there
  • Pausing for thought and thinking things through
  • Using acceptance to change their actions
  • Not having to waste too much energy fighting something or our loved one
  • Dealing with emotional pain
  • Getting ready to stand back from caring

With acceptance, I find that it helps me deal with pain. especially emotional pain. Sometimes no one tells you this useful skill, but its one of the most important tools a carer can use and there are many skills and tools that I will share with other carers when the time comes.

Sometimes acceptance will not result in the same conclusion as with other carers. Plus the time for acceptance will also be different from other carers. It is up to you when you accept things in the time of your journey.

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3. Why are carers good at acceptance

A caring role “especially within mental health” will need someone who is ready to accept things, usually acceptance brings patience, but this is not always the case.

A carer may find themselves sitting alone at times thinking things through, they may question why things are happening this way and what could the do about it. Sometimes acceptance is just down to the persons own character traits, but the more someone provides care, the more they begin to accept things.

Sometimes acceptance can be a bad thing, a carer should never accept to be treated badly or feel that they are worthless. Yet carers will slowly begin to use acceptance to heal and continue to provide care.

4. What makes acceptance so difficult for many other carers?

I have thought about this and to be honest such an issue is not just with carers, it can be for anyone. The thing is, acceptance can heavily depend on the situation.

Think of it this way, imagine someone you have known all your life suddenly change emotionally. As if they distance themselves away from you, just as if you do not know them anymore.

They cut off links or they do not understand you, they blame you or cannot even communicate as they use to.

You begin to wonder if they loved you as they used to, but now your loved one seems to be a completely different person. How far can you accept this? How much will you fight just to bring things back to the way they were before.

Sometimes the hardest blow for carers is when they refuse to accept the situation and will sacrifice themselves to provide care, this is a painful thing us carers to endure and it may cross our minds each day. Perhaps acceptance can be a prison or a door that can set a carer free. I just hope I have given some carers food for thought.

CoolTan Arts Largactyl Shuffle Midnight Walk

On Saturday June 21st 2014, 11.45pm to 5am, Sunday June 22nd 2014
I joined CoolTan Arts on a fun, guided midnight walk through South London.
We stopped along the way for talks and games on ‘mad’ buildings, night working, surrealism and the anxious city.

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The walk/event was part of Anxiety Arts Festival London 2014

CoolTan Arts Largactyl Shuffle is a guided, stigma-busting cultural walk, designed to encourage mental and physical well-being, through art, exercise, humor and history.

Although I am a carer of someone suffering mental health difficulties, there is always more room to learn more about mental health and Cooltan’s Largactyl shuffle walks are great to not only learn about mental health, but also about the city of London.

I actually have done a video blog for one of their shuffle walks last year, but I think it was about time I join another walk with them. They are so much fun and its a great adventure. So while I was on the train watching the sun set, I was looking forward to the walk, although I was a little anxious on what to expect on walking at night.

Before I continue this is cooltan’s 8th Largactyl midnight shuffle walk, but what is cooltan all about?

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CoolTan Arts believes mental well-being is enhanced by the power of creativity. It’s a charity run by and for adults with mental distress.

They run a varied program of creative workshops from their vibrant arts center in Southwark’s lively Walworth Road, near Elephant & Castle; these include visual arts, textiles, digital arts, video, poetry, and performing arts. Our activities include exhibitions, public art projects and well-being walks which help break down the stigma of mental distress.

As I have mentioned earlier this walk is run in conjunction with the Anxiety Arts Festival London 2014.

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The Anxiety Arts Festival 2014 is a new London-wide arts festival, curated by the Mental Health Foundation. Taking place at multiple venues throughout June 2014. The festival explores anxiety, looking at its causes, how it affects all of our lives, and how it can act as a creative force.

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So As you may guess this walk had quite a lot to learn about anxiety and mental health not only from what we are being told, but how we experienced the walk.

Oddly enough, I had an argument with someone before I got to the walk, unfortunately London does have people who are homeless most of those of no fault of their own, however on this occasion this person decided to blame me for his problems and an argument ensued, this left me feeling anxious, although I did not know it at the time.

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I then calmed down and headed towards the walk and spoke to some people who turned up in order to find out their expectations. Cooltan volunteer walkers and Michelle Barrier the CEO of CoolTan arts explained at around 11:45 pm what the walk was about. They told us about health and safety and we filled in some forms to check our health since some walks can be tiring, but the volunteer walkers tend to walk at a moderate to slow pace in order for people to catch up.

Michelle talked to us about how she had experienced anxiety in the past and felt this walk should not only be about learning what anxiety is, but also about celebrating it by going through places on the walk that might be dark or where we would not usually go at night.

Our first part of the walk stopped past some people’s favorite building the Xmas Tree, where Michelle explained a bit more about the building.

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We then walked towards Redcross Way and we were told about someone called Octavia Hill who was responsible for being the first person to develop social housing. Oddly enough thinking about Octavia Hill made me wonder just a bit more about people who are homeless in London, especially those who have mental health problems.

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One of the volunteer lead walkers who I think was called “Lou” spoke about the “Winchester Geese” who were prostitutes probably around 1598 onward. This is because they were licensed by the Bishop of Winchester to work within the Liberty of the Clink. This is where such women and many other poor people were buried in a place called Cross Bones off redcross way.

Cross Bones is a post-medieval disused burial ground in The Borough, Southwark, south London.

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The more Lou explained about who was buried at the burial site, the more I thought about easy it is for the destitute to become victims of society even in these days, it made me feel anxious and Cooltan kindly handed out notes to people where we could tie them to the gate as thoughts to those who we have lost, I tied one myself.

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We continued to walk onward and reached the St George the Martyr Church, which is opposite Borough tube station. We where given a talk by another lead walker called “Tim” about Charles Dickens and how he used to walk the streets of London talking to the poor or down and out about their experiences in London, so he could write about these experiences. We were told the reason why Charles Dickens moved to this place because his dad was in prison and then we began to have fun with our first activity as we split into 8 groups.

Since it was night time, this activity centered on matching the description of what kind of people work at night on to pictures. I watched how each group were solving the puzzle and also talked to some volunteers.

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We then walked onward and were told about the “Walkie Talkie” building and how it literally melted a car by reflecting light onto the vehicle.

We continued to walk further on crossing quite a few roads, but I was glad to see the guided walkers helping us cross the roads since it certainly can be dangerous at night. We then walked down the underpass and into the center of the roundabout at the Elephant and Castle spot.

We were then told about Micheal Faraday and the meaning of the reflective building behind us. There were many interesting facts about electromagnetic inventions.

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Next Olea who is another go the lead walkers then set us our 2nd activity and this was on each of us in groups discussing what anxiety is and then showing in some form how to combat anxiety. Within my group, I decided to take the lead and explained to the group that to combat anxiety, we can reassure the person who is anxious.

We should do this reassurance by doing a group hug.

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Next we walked towards elephant and castle market place where it got very dark and a few of us began to use the free NHS torches provided to us free by cooltan, I did not shine my torch that much, but I did felt anxious of the dark places even though I was in a group. At that point my mind flashed back to where I had an argument with someone homeless person and I wondered if I was shown anxiety before I got on the walk….how interesting, although it did leave me in a bad mood.

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We then crossed a road and Michelle Barrier talked to us about the Zebra building and the problem of council housing, she mentioned the large fans at the top of the building, which I never really paid much attention to beforehand. We then walked just a bit further on and we were told that the Labour HQ building used to be situated around the area, I think it was the “John Smith” building.

 

 

Within a few minutes a sound rang out, the sound made me feel slight anxious of what it was and I was slightly proud with my quick thinking to record the sound.

After a while we ended up at the Cooltan Art’s HQ on Walworth road where we relaxed after a long walk and heard a bit more about Cooltan Arts activities and how they were formed. Cooltan explained one of their latest project was the Food for mood book and the poetry book which they have for sale.

Talking about poetry, we were treated to some poetry by Peter Cox.

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Basically Cooltan main aim is to try keep people suffering mental illness out of hospital with the use of harnessing the power of creativity and art. Another aim of Cooltan is to raise and highlight what mental illness and mental health is, they also help in combating mental health stigma.

After a rest we then continued on with our adventure into the night and passed a building where Charlie Chaplin was born.

We then moved up to Albany road and Michelle Barrier talked about Richard Muzira who used to help Cooltan Arts with filming production.

Richard Muzira, was sadly killed in a cycling accident on Monday 18th November.

The accident, involved a collision with a tipper truck, which took place at the busy junction of Camberwell Road and Albany Road.

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Cooltan Arts are hoping to get a memorial for Richard.

We then moved on to Burgess Park were we had another Activity from a lovely Italian lead walker called “AVA”. Her activity involved people standing in a line holding up a letter where we guessed what the letter would form and I think it spelt out something to do with psychiatry.

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Ava then continued to talk that each letter also had a meaning on how we work in the city of London and how we need to recognize our own mental health.

We then stopped for a moment to look at the sunrise, however we had some uninvited guests which made me feel a little anxious, because the uninvited guests were a little drunk if you could say, although they did enjoy our walk, perhaps a bit too much. However they then calmed down. Perhaps this happens a lot in the early hours of Sunday morning.

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We do not often get to see the sunrise in the morning and it was one of the golden moments of the walk, since we are so busy making a living, thinking of the future, that we forget about present, we forget about now, if we just stop only for the moment, we can feel the beauty of nature.

Our next stop was to at Camberwell green where we stopped at the sculptural bench, created by artist Rossen Daskalov, made from oak timber, the bench design is based on the theme of reconnecting, with each other and with nature. Sited next to the Ginkgo Tree planted by CoolTan Arts to commemorate World Mental Health Day 2011, the bench creates a place of calm contemplation for all to enjoy.

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One of the last Cooltan arts lead walkers then talked about the surrealist movement on its idea of the unconscious and its importance of dreams bursting into reality as one of the walkers sat on the bench. She read a lovely poem which I could not capture at the time and she also spoke how the surrealists linked creativity with mental health.

Eventually we ended up at our last destination being the Maudsley hospital, as day light was all around, my anxiousness began to fade as night finally went away, but then also the excitement was gone as well. We were all congratulated for staying with the 5 hour walk and we stopped for our 2nd set of refreshments at the Maudsley Chapel.

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My final review of the Cooltan walk is that the event was an amazing experience and it was well worth the time to make it there. I can see not only the connection with other people on the walk, but also the connection on learning about mental health, learning about the city you live, learning about yourself and how you experience things. Plus learning about the hard work Cooltan are doing when it comes to mental health.

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You can check out more on “Cooltan Arts” off their site being

http://www.cooltanarts.org.uk/

One of the most important tools available for long distant Carers

Caring when living with your loved one who is suffering from mental health difficulties might be difficult at times, but what happens when you do not live with your loved one? What do you do? How do you check on how they are?

Carers come with many tools to help them in their role, some are easily obtained while other tools take time to appear and can take even longer to use well. Some tools are more of use to carers who live with who they are caring for, but there are many different types of carers.

Who are the different types of carers?

Some are young carers who are caring for parents or those older than themselves.

Others are carers who not only have to look after themselves, but look after someone else.

We also have older carers, family carers, foster carers, neighbours who help with care and many more types of carers, but what about distant carers?

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What are long distant carers?

These carers do not live with who they care for and there are many reasons why, which I will list below.

  • They have moved on with their own families.
  • These carers never lived with who they care for in the first place, but try help provide care.
  • Work has forced the carer to move away.
  • Family relationship breakdown.
  • The long distance carer is caring for more than one person, one far and one near.

…..and I am sure there are many more reasons.

Well this tool which I am going to explain is the most easiest to use, but does lead on to other difficulties which carers will need to be aware of.

So ok lets get on with it, What is this device? Well this useful device is none other than the phone.

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If you are over in the UK you may have noticed quite a few mental health organisations highlight the importance of talking, especially when breaking down mental health stigma and one of them is “Time to Change“. Time to Change is England’s biggest programme to challenge mental health stigma and discrimination.

They run many campaigns each year and one of their biggest campaigns was the “Time To Talk” campaign, where people would just at least try look out for each other just by talking. It all seems so simple doesnt it?  All we just need to open our mouth and speak about how we feel or ask how someone else is, but unfortunately this is not the case and here are a few reasons why :-

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1) If it was so simple then Time To Change would not need to work so hard to remind people that talking is so important, especially about reducing mental health stigma and as a form of healing ourselves

2) If talking was so simple, then we would not have to be reminded that as a society that we need to check up on people, especially older people who are a “growing” population not just in the UK, but around the world and many in the UK are becoming even more isolated, with no one to talk to.

3) If talking was so simple then people especially in the UK would talk about their feelings. Alas this is not the case, men especially being the ones who bottle things up and this is one of the worst things to do, which is perhaps why males are 3 times more likely to be more successful in taking their own lives.

4) Other organisations like “The Samaritans” use the phone as one of their main weapons in combating suicidal problems especially when people feel alone, isolated or have no one left to turn to.

So you can see the importance of not only talking, but using the phone to check up on your loved one. Still, picking up the phone and ringing someone who you need to check up on is only the start of the task. Long distant carers need to be aware of the following.

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1. How often they should phone

The thing with using such a device as a carer is do you ring every day? Or once a week? As a carer you do not want to bother the person to the point that they do not answer the phone, but then you also do not want to leave things so late that the relationship becomes even more distant.

The thing a long distant carer needs to work out is how bad the condition the person is. If someone is emotionally at their worse you may wish to increase the amount of time you call them.

However if your loved one seems to be getting on with things, then you perhaps may call them once a week. This all depends on how your relationship is with the person you care for.

2. What to say when on the phone

This again is not as easy as it seems. Obviously one of the best way to start a conversation is

“Hello, I am just checking to see how well you are”

Of course I am no expert on phone conversation, but to be honest if you are caring for someone, then why not be honest about it? This is your relationship with your loved one and you ARE actually checking to see how they are. Sometimes this is not so easy when talking to someone having mental health difficulties, so you may want to give them some space and let them talk to you on how they are feeling. For them to open up to you is usually about trust, which is one of the hardest things for many who have a mental health condition.

Carers who even live with their loved one may struggle with trust issues, because one of the reasons could be mental health stigma where their loved one does not want to let others know they are suffering from mental health problems and this could range from depression all the way to bipolar.  Some mental health conditions are so devastating that the loved one cannot communicate their distress.

I find asking short questions and asking how the person feels about their day usually helps, conversations should be about learning more about each other, forming a relationship and empowering each other. People can heal themselves so much if they let go of what is hurting them inside, but because of trust issues, many keep this all in.

3. What to do when they find out things are not going well

If you are a long distant carer, then this is one of the things you worry about in the back of your mind. To be honest there is not so much that can be done unless you manage to phone and catch the problem before it gets worse. The best thing to do is form a network of friends, neighbours or family who may live closer by your loved one. However to catch a problem or find out if a situation is getting worse, you have to phone and watch out for the signs beforehand.

Using the phone near or far

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You do not have to be a long distant carer to use the phone in order to help care or check up on your loved one who may suffer mental health problems.

There are other reasons to use the phone as well, which I have listed below.

– You can use the phone to talk to someone when things are difficult for yourself
– You can use the phone even if you live with who your care for
– You can use smart phones to send text messages to your loved one, even if the relationship might be strained.
– Use the phone to help get information on how to care

Even if things seem OK, phoning someone can alert you to problems before they arise and even if everything appears fine, then you know you are continuing the relationship as a friend or carer.

Using the phone is just one of the very important tools a carer should get used to. Even if it is used to aid with care or aid the carer themselves.

So if you have not phoned someone for a long time, maybe reading this blog post is a good reminder……

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Friends of Cathja Event Review

On Wednesday the 18th of June 2014, I was over at the Hermitage Community Moorings based at Wapping for another of the Anxiety Arts Festival 2014 event.

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However what is the Anxiety Arts Festival all about?

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The Anxiety Arts Festival 2014 is a new London-wide arts festival, curated by the Mental Health Foundation. Taking place at multiple venues throughout June 2014. The festival explores anxiety, looking at its causes, how it affects all of our lives, and how it can act as a creative force.

London-wide arts festival, curated by the Mental Health Foundation and taking place throughout June. You can get more information about them off their site which is

http://www.anxiety2014.org/

Being a carer of someone suffering mental health difficulties, I had a keen interest in exploring what this event had on offer. I was told by Ann Sexton who is Learning and Communities Curator for the festival that this event will show new film by Albert Potrony which is called “The Potential Space”. The film focuses on the relationships between the people working in this unorthodox space, the work they produce and the setting they are in.

Cathja Art Exhibition

Albert Potrony’s The Potential Space is comissioned by Anxiety 2014 & Friends of Cathja and Funded by Time to Change & the Mental Health Foundation.

There was also drinks, a barbecue, some inspirational folk songs and a chance to learn more about the project and meet friendly people. The sun was out and the waves off the barge were soothing and relaxing. I felt at peace and could go almost anywhere as I explored the Hermitage Community Moorings.

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I met the lovely Ann Sexton for the second time in my journeys getting views and going to mental health events around south london and she introduced me to some of the big players off the “Friends of Cathja” project. There was quite a good turn out and people were very friendly.

 

 

 

Again I took some time to check out some of the creations done at the “Friends of Cathja” project and a lot of the work was creative and very imaginative, where the theme relates well to the Anxiety Arts Festival. One thing about the Festival is that both the events I had been to was free and I am sure many others are free as well although some might not be. Remember to check out their site.

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After wandering up and down the moorings I went into the exhibition because I was drawn to some music, which set the scene nicely.

After that song, we got to hear 4 songs from a lovely person who I could not catch his name at present, but as a consolation, here are at least 2 of the songs he sung with his recent band.

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After hearing the folk songs, they showed the film “The Potential Space”. I listened how the project looked to involve anyone especially those suffering mental health difficulties a chance and the space to express themselves creatively at the bardge. A place away from the crowded pressures of society and to feel alive again. I enjoyed hearing the views of those involved in the works that they produced, how they got so skilled and left a mark behind for others to marvel at. There was not a hint of suffering on any of the workers as you can see how healing it was for them to express themselves in their work.

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I then went off to explore the Cathja Barge myself and talked to a few people as I took some pictures. Learn’t how important that there should be a place in society for people to express themselves without any pressure or profit in such a way, that healing took place and faith and confidence was restored not only in the community, but in themselves.

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As the event almost came to an end, I wandered off down the moorings and watched boats sail up and down the river, while the sun began to set and the splash of the waves soothed my mood.

I hope you enjoyed this blog and I encourage anyone who is around London during June 2014 to check out more of the Anxiety Arts Festival 2014.

Things to do when everything goes wrong as a carer.

As a carer there have been many times when everything just seems to go wrong. You loose faith not only in yourself, but in everything around you. I remember when trying to care for someone, it felt that everything I used to do was just thrown back in my face, even though I knew I was trying my best, but just when something was just beginning to settle, something else would go wrong, then something else and another and eventually I would withdraw into a dark place.

But what happens if I withdraw to a dark place for too long? What happens if all carers did this?

Well I can tell you, it is possible that you could loose your mind, you could end up being depressed, angry or even worse. It is so important to realise when you are entering such a period. Carers who care under difficult circumstances can be very fragile, even when they do not show this. One day a carer may hide their
pain with a series of smiles and laughter, but when alone all that is left is perhaps fear, pain or worry. So what can you do when your world begins to collapse on you and your faith is beginning to fail?

I have listed some steps that may or may not help your situation, I cannot say that they will solve your problems, but they will at least be a light on the road of a carers journey.

1. Every bad situation in life is temporary.

Whatever you are going through, nothing in life is permanent, even though the good things in life must move on, so is it the same for the bad things as well. As with the saying “Happiness succeeds sadness succeeds happiness”.

The horrible bad luck or failing care you are experiencing will move on, you just have to hang in there and realize this. You are so close to the day when things will settle and the storm will pass, but remember that storm will come again and surviving the current storm will give you the mental and emotional toughness to survive.

2. Worrying, moaning and complaining will not change anything.

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To be honest, this is the hardest thing for a carer to do. Secretly inside, I probably moan and groan about my situation as a carer, I won’t lie. Why should I?

The truth is my moaning will not change what has happened. I think it is fair to say when can get upset for a bit, its human nature, but to continue to moan and worry will just send you into a cycle and the worse the cycle gets, the more you risk your own mental health. Pause for a moment when you feel a complaint coming on, think to yourself “Is this going to change my situation?”. Obviously it wont.

3. The best thing you can do is to keep going.

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While providing care and things seem to fall apart, it is ok to take a step back a bit and rest to get your energy back, but once you have recovered, you should try and keep going, not just for whoever you are providing the care for, but also keep moving for yourself. Avoid giving up, you must fight for yourself and
who you care for. They mean so much to you and you are fulfilling your role. There is a reason you are caring and if something goes wrong, it is a test of your faith.

4. You can’t change things that have happened to you but you can choose the way you feel about them.

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Even though the statement is a long one, it makes sense. We are thinking animals, we think about everything.

We think about how people feel about us, we think about the past and future, heck we think about thinking. So what happens if you constantly think about the bad things that has happened? Nothing much, you may end up putting something into perspective, but there will come a time when you have to change your outlook, you have to combat your worry or fear, but thinking alone will not change this. You have a choice, you need to look at the choice which will give you the positive outlook.

5. Stay in the present moment and live life fully.

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When we are hit by bad luck or misfortune from all sides, its so easy to keep looking back at that episode to the point where you are almost living in the past. Sometimes something traumatic cannot be easily avoided, but it goes without saying that if you can use a word or thought to take you to the present, then
you can heal a lot more quickly, you will not become what is some form of ‘ghost’. Your memories will not haunt you and you can leave in the present and look to change things. The present is where the power is, you need to learn to use it.

6. Reassure Yourself or check yourself

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When you are hit with worse situations and everything seems to fall apart, then stop and look at yourself, pause for thought and reassure yourself. Check that you are here and notice that this is just a setback, you will succeed one day and to do this you need to check yourself for negativity and combat the habit.

7. Talk to someone

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This is one of the easiest things to do and this is when you know how important friends or families are. Do not feel you have to cope with things by yourself, we are never alone, it just depends who is there for us to reach out to. If no one is close to us, then the Samaritans (UK) are just a phone call away and carers can
also make use of carer’s groups or carer centres within their borough. Make sure whoever you talk to is something that you can trust with your fears.

8. Get the right people to help you.

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Be it professionals or support, you need someone specialized who can assist you with what to do when problems begin to happen when you are providing carer. You need to recognise who they are, especially if you are caring for someone who is suffering mental health difficulties. This might be a carers lead, or your caree’s care co-ordinator, you may wish to speak to a mental health advocate or speak to someone at a carers center.

The point is that to make sure you do not have to fight alone. Feel free to check my links page for more information.

9. Do something

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Something that is not as easy as it sounds, some things when a carers world falls apart, we tend to just fall back and wait. Us carers can sometimes wait until something else happens and if we are lucky, that something might be good, but usually it could also be worse and thats when we should have done something about our previous situation. Do not put it off till the last moment, do something about it.

Or otherwise “Doing something” could also mean take time out, do something you enjoy, do not just sit there feeling hopeless, get yourself out of the situation if only for a while, but do something to take your mind off what is bothering you.

10. what is there to learn from it?

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In life there is a lesson for everything, most times we do not even notice the lesson, but when bad things happen, then its time to do a bit of learning. You know the saying? “We learn little from success, but much from failure?”. Well this is the perfect time to find out what there is to learn. I suspect the lesson may not show itself so easily, but rest assured it is there to learn from.

11. Start off every day with something positive

As soon as you wake up, and i MEAN as soon as you get up from your sleep. Think positively!! You may not believe it, but it will make some difference to your day. It might be like

* That was a nice sleep
* Today looks like my situation will improve
* I am glad to be alive
* I know I am going to make a difference today
….and so on.

You know the reason why you are here today and there are so many reasons, you are there to help those you love, even though someone you try to help may push you away.

I keep coming out with certain sayings, but here is another. “If you cannot be with the one you love, then love the one your with”. Everything has a positive spin on it and as you can see that the idea of being positive is that the person you should love first……..is yourself.

12. Try to do something nice for someone worse off than you are

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It might not seem like it at the time, but think of it like this. How are you reading this blog? Is it from a computer? phone? tablet? Then you are one of the lucky ones, you have technology or the resources for reading something that might help you.

There are those out there who are without a such things, they might not even have material possessions or are suffering physical problems, they may lack the basic things like food and so on. Its not best to rate or compare yourself with others, but out there someone could always use your fortune. We won’t all be rich or famous, but we all have our unique talents and there is always someone out there who would be happy to swap places with us. Perhaps do something nice for them.

13. Don’t beat yourself up.

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Not the most easiest thing to do. In fact, I am going to disagree with myself. I actually feel it is ok to beat yourself up every so often, but do not fall into the trap where you are constantly doing this. Why make yourself your own worst enemy?

It is hard to control misfortune and you need not blame yourself over things that could be quite possibly out of your control. As in the carers world, beating yourself up over providing care to someone whose health is failing cannot possible help in your role. You are not to blame yourself and you deserve to treat yourself better.

14. Don’t over react to trivial happenings.

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Ok, not everything is trivial, but most things are when you stand back and look at the situation. What makes the difference is how we react to trivial happenings and this is what I call the slippery slope. All it takes is for something major to happen and then you will get upset by this and before long everything begins to upset you, which turns you into one negative person.

We must realize what is major and what is so trivial that it should not request all your energy wasting time being upset over it.

15. Laugh It Up

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This does work, but how to laugh is not so easy, but once you laugh it can provide you with many health benefits; be them emotional, mental and even physical.

I do not really have to prove that happier people tend to live longer, so try to find a way to laugh about the situation (depending on what it is).

16. Don’t Give Up

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I probably have mentioned this before, but as a carer it is so important not to give up. You are not only caring for someone, but perhaps fighting their corner and your own as well.

It is ok to rest for a bit, but stay optimistic, stay in the fight, do not give up. If things go wrong, rest for a bit, but do not give up. There is a reason you are doing this role.

17. Focus on One Thing

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It is easy to focus on many bad things that have happened on your caring role, but if you do that you will become overwhelmed and risk making yourself ill. One thing at a time is the best way. Start with the simplest and move on to more difficult task, but concentrate on that one thing that might have fallen apart.

18. Focus on your good qualities and give yourself a pat on the back.

We all have them. YES! we ALL have them, what is yours? Are you someone who is there to care no matter what? Are you the person to ask for advice? Have you been caring for a very long time? Maybe you are the only person in the family to still be there to care? Well these are all good qualities and if you are hit with bad luck or failures, then remember your qualities. You are a fighter!!

19. Have faith in yourself.

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I mentioned how faith is important for carers a while ago. Still you can put your faith in anything, but putting faith in yourself, is one of the most important things a carer or someone can do. Without this then its so hard to do anything let alone surviving bad misfortune. Check out my post on faith.

20. Focus on the solution instead of the problem

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Its so easy to focus on the problems, maybe we all do this out of habit, perhaps this is human nature, but what would happen if we decided to focus on the solution? Wouldn’t that be amazing? Perhaps write down a list of problems you have been having and next to that list write down the solutions. Just take time to do this and see where things go.

21. See problems as challenges and opportunities.

You are on your journey as a carer and this journey is not a straight road, its a journey where the road bends, twists and turns and sometimes disappears off the path completely. This means the journey as a carer is a challenge. You have your own path to take, your own path to live and no one’s path is the same, but we cannot easily walk someone else’s journey because we are all unique in this world. As a carer this problem is a challenge its up for the test.

22. Say “I can” more often that “I can’t”

This is another human condition. I bet as a carer you probably think this in your mind more often than you know and thats ok, but now that you may realize this, what happens if you can say just for once “I can”. Say it out now, don’t think it. Just say it out. Then say it again…..

Its so easy isn’t it.

So what happens if you say this more often? What happens if you think this more often? Try get into the habit, because it is a very good habit to make

23. Choose positive-thinking friends.

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We are what we eat and thus we are who we surround ourselves with. No, you do not need “Yes men!”, you want people to know what you have been through and to raise us up. You want to avoid those that complain about everything and its not so easy when providing care to someone who may do this, but that does not mean you have to desert who you care for, what you want, what you need are friends who at least at some point give you a positive outlook.

24. Read inspiring stories/quotes,

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This is something you are doing already and I hope it is having an affect, but why stop at this blog? You might want to check out my pinterest section, which is full of positive quotes and sayings. Reading positive quotes is a sure fire way to get yourself thinking positive about certain situations, even if those situations do not change so quickly.

25. Repeat affirmations that inspire you and motivate you.

I hear this is not so easy to do and might not often work, but there will be a time when this might be all you have left. A carers path can often reach a dead end and you might loose faith in yourself, if there is one thing you can try is to repeat to yourself how important you are to be here right not and carrying out a family duty, a caring duty and being there for your loved one.

26. Learn to master your thoughts.

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This is the most hardest of the lot, which is probably why I left this one for last. We as humans have a habit of cycling things through our minds and its so easy to cycle the negative thoughts. We need to change our pattern and its not something I can easily explain in this blog, but I promise if you can master your thoughts then it will make your role a lot easier, especially when things outside your control begin to test you.

 

Understanding is what carers do the most

I didnt understand when it finally appeared
I didnt understand when you turned to me
I didnt understand my new role
I didnt understand what I had to be

I didnt understand the world of carers
I didnt understand the world of the mentally ill
I didnt understand how to get help
I didnt understand you needed me still

Only time made the difference
and a lot of patience
a lot of help
with plenty of assistance

and now I understand what I need to do
I understand what a carer is
I understand that I try to be there
through all the pain we will share

I understand how you suffer
I understand to face the fear
I understand myself a lot more
in order to provide more care.

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So there it is, one of the key skills a carer needs to carry out their role, which is being able to understand.

As with belief, the skill of “Understanding” is not so easy to attain. We all understand things each day, but the more you care the more you begin to understand how to cope with caring. The longer you have been a carer the more you may be able to understand your role. Yet, it is OK to find yourself caring for a long while and feel that you do not understand anything, you do not understand why this has happened to your loved one, you do not understand the pain and torment you face along with who you are caring for.

Why is this OK?

Because you are at least trying to think with your mind about who you are and what you have become. At least you are trying to understand the sorrow and heart break. There will be times that there will be moments of happiness and there will be times when things fall apart, but if you try to understand then it may help you to be at ease with yourself for the future.

Out of all the carers I have met in carers groups or networking with other carers, the one thing I have noticed is how wise they are on their journey as carers. They never show that they know it all and through the most difficult times all carers face, I know silently that they continue to try and care for their loved ones through understanding and providing love and giving care.

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I cannot claim that it is easy to understand someone suffering mental health difficulties, this is just not so possible, but in order to carry out appropriate care I always remind carers to do a little research and ask around about the mental health condition someone has, so the carer knows relapse signs or knows what to do in a situation. A carer should at least try and find the diagnosis of who they care for, although not everyone is happy to know what the mental health problem could be, in case the answer would be just too devastating.

With understanding, I feel carers can travel on their journey without too much hindrance, even though at times the cared for may lash out at the carer, be it emotionally or physically, but as carers all we can hope to do or even have left is to understand.

Financial, energy or material resources can do little effect without understanding the cared for situation or our own situation.

I do often feel that understanding is something that forms a little each day. If you are a carer of someone suffering mental health difficulties, I ask that each day just try spending 5 minutes trying to understand your role and where you are going. You do not need to act on anything, just try to understand your situation. Even if you are not actively thinking about how you are providing care.

We know that each day something is forming within all us carers and we continue to try and provide care because we have that connection no one else has at that moment, we continue to hope and pray because we fear loosing that person. We sacrifice our time because there is no one else that can do this for us unless they are paid, we as carers do all this and more because we understand.

We understand as carers and yet, we do not show it, but only through the care we try and provide.

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Why Belief is important for us Carers

I recently had done a creative blog post belief for carers. The post is simply called “Belief for carers” and I do admit it may not make sense to some people reading the blog, heck! it does not even rhyme. However where I feel that blog post main effort is to be just a message from the heart of a carer reaching out to others.

Perhaps one could say the message of that blog post is as pure as it can get because it has come from someone caring for a long time.

Actually it would be a good idea to perhaps read that creative blog post again, because some of the text can be rather cryptic, but this just adds to more involving reading. You can always comment on the blog postor take away whatever you feel from it.

Anyway let us be a lot less cryptic this time, why is the word “belief” needed for carers? How can belief affect the role of a carer and who they care for as well as dealing with others on their journey as carers.

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As I started out on my journey as a carer all those years ago, I can certainly say that I lacked a lot of belief.  In fact you could say that I did not have much time to think, let alone any time to believe in what I was doing.

Only through a series of battles and development of thick skin that I decided to try and believe in myself, because no one else was going to do it for me. This is not to say that I am a strong person, I am most certainly not, but I do value the use of belief in the world of caring.

Carers throughout their role or journey will fail on many things, this is unfortunate but I want to be realistic, the role of a carer is just not as rosy as some make it out to be. So when things do not go according to plan, carers begin to not put so much faith in too many plans, there will come a time when carers will just have to take a step forward and believe in themselves, believe that everything will be OK, believe the next day will be easier and believe support will come.

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In this world we have to make plans, nothing is certain for tomorrow, but plans can soften the blow of the unpredictable, the unfortunate, the unrealistic.

This could be the unpredictability of finances or the health of whoever we care for, especially if the person we care for suffers from mental health problems. I can certainly say very few things can be unpredictable as mental health. If plans fail, or support fails then carers need to believe things can turn out for the better. This is not to say that carers should not trust in plans, but the path of a carer does often stray away from planning.

With belief carers can have some hope and this can affect a carers health and mind. Carers may know deep down that with all the energy and effort will not be enough, but with belief it can give us carers some calmness in the situation.

There has been times that I have been let down, and after a while I know I have failed the battle, this makes me wonder how many carers out there have been let down, how many carers out there have to pick up the pieces. This is where I stop to think and reflect, I may not see how many carers out there suffer, but I know for sure that at that moment I was suffering, but did not want to give up. My trust was weaken, but now my energy has to be put into belief in myself and in the system that is meant to help us carers.

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Belief for carers is not the only thing that can help families or carers in such a difficult and unpredictable world, there are many more skills and attributes that can be useful for carers and I hope to blog about those when the time comes.

Carers can put belief into many things, but the first place to put belief is in themselves, in their plans which may or may not fail. Carers can put belief in their loved ones and have hope that the next minute, the next hour, the next day will be better.

Carers can put belief in others and hope that our trust will stay intact because it is so difficult to always care by yourself. Carers need a system that supports us, so we as carers can support whoever we care for, be it our friends, family or even neighbours.

Some people may actually have belief in us carers, but this is not so easy to see. How can you show belief to other people? So the best effort is to believe in yourself, this is something you can feel for certain.

Just stop for a moment when things seem to feel at their worst. Believe tomorrow will be better and that you can make a difference. Believe you are needed when you feel pushed away, you have tried your best and you believe this to be true even when you feel others around you seem not to understand.

Believe in yourself, because above all……..you deserve it.

Belief for carers

Belief

I know its hard, so unexpected.
You struggle each day and your mind wanders
Where next? who to turn?
You have to believe you can cope

A carer’s journey is filled with doubt
You mind wanders and does not sit still
Sometimes you are alone
But belief can take you through

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Each day brings change so fast
Just as much as you can care
Life is tough, but you have to be there
Belief will give you the strength

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They need you, we need you
Be their strength and support
They may not show it
But you have to believe you can do it

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The clock ticks and you wonder
You wonder about mortality
You wonder about life
Time is all thats left
But with belief more will come each day.