Monthly Archives: August 2014

Difficult things that carers go through on their journey of caring.

When I started caring even though I did not see it as a choice at the time, I did not notice how much of an impact it would have in my life. I initially started my caring journey because mainly I was afraid what would happen if no one was there to help provide any care for my loved one. I was fearful for my relative.

Almost 14 years of caring I now look back at the journey I have taken and have learnt how caring not only has affected my life, but many other carers out there. My caring experiences have not always been difficult, there has been many great things about being a carer, but what some people might not realize is that carers can loose many things when they take up the role of caring.

I am hoping my blog can shed at least some light on such a difficult and sensitive subject, although I must note that I seek not to blame anyone for what carers go through. We all have difficult choices to make and we all responsible to a point. When I started caring for someone struck down with mental health difficulties, I did not foresee how much of a struggle they would have to go through.

Maybe it was my own ignorance or stigma of mental health, maybe I did not educate myself enough on how mental health illness can affect families, but I can only hope my journey in the realm of caring can lead me up an easier path where I learn more about the struggles of others and how I can cope with my own struggles as a carer.

Caring

Almost everything needs careful planning

One thing I noticed what carers have to do from the outset is plan for things. As a carer you never know what the future might bring or if the illness might get better or unfortunately get even worse. This is why carers have to dedicate time to plan for as many things as possible. It is best not to leave too many things to chance.  As a carer I looked back on the support I was given and I am very grateful for such support. I have used Carers center in my district a few times over the years called Carers Lewisham and I advise other people who have become carers to check out their area for carers centers.

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The reason I mentioned the carers centers is that I feel carers should never be placed in a position where they are left to do so much by themselves. We carers need that support and if things need planing, its always helpful to have others help you with such plans. Usually it can be great if you can plan for things with whoever you care for, but unfortunately when you care for someone who is either too unwell to help out or you need to consider help for yourself, you will need a carers center support.

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Careful planning for the future does take time and for this carers need time to plan. Such things cannot be rushed.

Very little time for carers needs

This might sound selfish, but I want to be honest not only for myself, but for others struggling to care for their loved ones. Carers can and often do lack the time for their own needs. Perhaps this is one of the most common situations a carer can find themselves in. Perhaps us carers do not notice that we give up a lot of our time to provide care because we want to see our loved ones recover, we carers want to see that we are making a difference and we want our loved ones quality of life to improve.

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Depending on how unwell our loved ones are, all this takes time. As long as you are a carer, I hope that I have made you aware that you will loose time for yourself, but its one of the things I wish to make known to others out there who may not understand the carers world.

Guilt

Perhaps this is something built within my own character, as a carer from all these years of caring. I feel guilty, I feel that I have let my loved one down especially if they fall deeper into their own illness. The darkest guilt may hit carers when they notice their loved ones first become unwell from mental illness, us carers feel that it might have been something we have done to cause this, perhaps we should have done something sooner in order to stop the mental health problems from hitting our loved ones sooner.

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Guilt can hit care-givers so hard that they may often risk their own mental well-being. Guilt does not always have to be the worst thing to affect a carer, sometimes guilt is like a form a stress that helps us carers react under difficult circumstances, but too much guilt can be very bad thing. As a carer of someone suffering mental health difficulties, I am sure you have felt guilty of not doing something and I know how bad such a thing can affect yourself. It is ok and I have been there.

Every day tasks can become more difficult / some impossible

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This is not the case for all carers, but I have to acknowledge those who are unfortunately caring for their loved ones who are sinking deeper into ill health. I do not want to be the bringer of negative and depressing news, but it is a fact that there are carers out there caring for those who unfortunately may never recover, this leads such carers to take on even more tasks and such carers can be hit by difficulties within systems that are meant to support families and carers.

Wouldn’t it be good if every carer around the world all received the best support they can get in order to provide care? Well if that was the case then perhaps we would not have to care in the first place, but even worse we know the balance of carer support can be lacking. In the UK there are around 6.5 million carers providing care for their loved ones, without those carers the UK’s National Health System would grind to a halt.

Lack of time

If you have been reading through my blog posts you might have noticed that I mention time quite a lot. This might be the time you are providing as a carer or the time you use to reflect on your journey as a carer. However without a doubt carers will find themselves loosing or lacking time for not only their own lives, but also to help provide care. We all know that time is precious and once its gone then you will not get it back.

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Caring for your family or loved one takes time and it does depend on how unwell your loved one is. If your loved one sinks deeper into ill health then carers may notice that they lack the time for many things. Please note I am not seeking to blame anyone for what carers go through, but I am pointing out the major things that hit carers and their families.

Disappearance of friends

Have you heard of the expression “when times are good then friends are near, but when times are bad friends disappear”?

Well I have probably summed up another thing carers go through. Think about it, lets say you was friends with someone and you had great times doing many activities with them. You both go out and have a laugh, perhaps socialize with others and you were always happy to see your friend. The one day they start caring for someone in the family who perhaps is suffering bipolar or depression. You notice perhaps signs of frustration from your friend, you may notice that they do not seem so cheerful as they use to be. This in turn affects how you feel and you wish to be happy again, you notice your friend stating that they lack the time to do the things they used to do with yourself. So the big question is would you hang around?

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This is the situation many carers can find themselves. Their social life can take a nose dive, their friends move on or carers just do not have the time to sustain their friendships anymore. Would like to point out that its not impossible for carers to make new friends, but unfortunately carers can find themselves isolated, especially if they are caring for someone suffering chronic mental health problems.

We all need friends, especially when we as carers really need that support to forget our own worries or fears. Friends can really make a difference in our lives, but when they go, the difference can also be a terrible price to pay.

Diminishing social life

This is probably almost as similar to the what I have mentioned above. Expect the major difference is that us carers can struggle to make new friends, which is what you can get when you have an active social life. The result is the same, carers can find themselves isolated. This does again heavily depend on how well their loved ones are recovering, but again if things become difficult then something has got to give and carers may find that their social life diminishes.

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Lives can limited by the mental illness

There is a belief that lives can be enhanced by mental illness and I can actually see a point to this argument. Acknowledging mental illness can be a step towards recovery and bring hope for the future, it is known that artists, musicians and many others creativity is enhanced by their mental illness. Unfortunately the opposite can be true as well, not many would openly admit that they would love chronic depression or they would want Schizophrenia or other difficult mental health symptoms.

When such mental health problems hit families, their lives can be limited and the family unit can be fractured. Carers try to seek the answer to this situation and some may find ways to cope, while others are left with lives that limited, but there is always some hope as long as care is provided.

 

Some people can’t see a future plan that is right for both themselves and their loved ones.

Not everyone is like this, but what people fail to take note of is that carers or care givers are the ones who do not walk away. Ok I admit we all have the choice to care for someone and no one can take that choice away, but such choices are a big step to take. The fear is that carers may not fully understand what they are taking on, but us carers cannot bear to not help or support those who we known for most of our lives, be it our friends, mothers, fathers, sons or daughters.

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We do not want to see those who are unwell fall deeper into neglect or lack of self care. At the same time there are those in society who will not think twice but to move on before providing care or after a while in caring. I do not want to criticize anyone, but these are the issues for carers in society.

Final thoughts

I am sure there are many blogs out there where carers are providing thoughts and stories about caring and this post is probably no different, but one of the reasons I wanted to post this blog is that I wish to help educate others on what carers go through, I wish to get my voice across on my own experiences and I also find writing about my carer experiences as a way to share what I have faced on my journey. This post can be dark and depressing, but I hope I have been honest and have managed to get most of my points across.

With careful support and planing maybe and just maybe us carers will not have to struggle so hard, but this will be a long journey.

Good luck in your caring role!!

Matthew Mckenzie

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Reachout Challenge Celebration Event Review

Welcome to another mental health event review. I have not blogged for quite some time off my carer’s blog, although I did do a video blog last week, which will be shown off this blog.

One of the other blogs I contribute to being slamtwigops has been suspended during a transition stage, but as for myself I like doing blogs and I am fairly passionate about mental health or the how carers can contribute in the well-being of others, so I thought to continue blogging off my site.

On the 12th August 6 pm 2014 I decided to pop over to the Croydon Voluntary Action building which is situated over in the London borough of Croydon.

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There was a special celebratory event taking place, which celebrated the 18 months of their anti-stigma project. This project was run by “Hear Us Reachout Challenge“.

Croydon Voluntary Action

Hear Us is Croydon’s 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. Helping to improve the quality of the services commissioned and delivered in Croydon objectives.

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“Hear us” aims

1.To relieve the needs of people living in the London Borough of Croydon and surrounding areas who have mental health problems by provision of services and advice.

2.To advance education about mental health for the public benefit in the London borough of Croydon and surrounding areas with the object of creating awareness and reducing the stigma attached to mental health.

Going back to reviewing the event, usually when I arrive to events or forums run by “Hear Us” it can sometimes take a little while to get in, but this time I got into the room quite easily. The staff was very friendly and I was given a run down of what to expect at the event.

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I noticed a lot of booklets and reading material about the project and I spent some time reading the Bio’s of the volunteers and contributes who work for “Hear US”.

When I sat down to set up my equipment, I was delighted to see that there was a goody bag filled with lots of treats and more information about the event, project and mental health resource information. There was also some sweets, fortune cookies, stress ball and pen, plus water and lots more. This showed how much effort “Hear Us – Reachout Challenge” had taken to provide information and make the event as welcoming as possible.

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While we were waiting for the event to start, the audience was treated to some music playing off the speakers, one of the songs was “I am still standing” by Elton John, which I thought was rather fitting. We were shown lots of slide show pictures of what “Hear Us” has been up to over the past 18 month’s since 2014.

After some slides, we then had the Project Manager Jane White speak about “Reach out challenge” and how they were funded by “Time to change“, plus how “Hear Us – Reach out Challenge” were set up to challenge mental health stigma, especially in the London Borough of Croydon.

Jane White - Project Manager

A lot was talking place that day and next up after Jane White spoke about the project, we then had Dr Ray Chapman speak on “Stigma & Discrimination”.

Ray presented on the following

What is stigma
Where does it come from?
Media representation “power” causes problems by stigmatizing mental health
Stereotypes and stigmatization.
What can be done?

Ray Presents on Stigma

Plus Ray then Talked about “positive impact needed from mental health professionals”.  Dr Ray felt things needed to be done things differently and felt Working with partners was key to tackling mental health stigma and discrimination.

I have also done a video blog of the event, which talks a bit more on Ray’s presentation as a review which you can watch below.

After Dr Ray’s presentation, we then had Jane talk more about the volunteers that helped Reach Out Challenge and Visa-Versa. Hearing from the volunteers was perhaps one of my favorite part of the event, because I am quite interested in people’s lives and their experiences. Some of the stories told by the volunteers were very personal and challenging to listen to because of how much each had went through, but I felt I learnt quite a lot from their stories. The learning aspect is good in order to challenge my own prejudices.

Volunteers speak out

The Volunteers spoke about how mental health has affected them.

– What they have been doing on the project
– the highs and lows on mental health
– How they have helped others especially on the work place
– How certain things they tried to cope with mental health did not always work in the past.
– The reasons they got involved in the project.
– Challenging stigma and how its still out there.
– How some lost a lot of opportunities and support once mental health difficulties first hit them, but felt a lot about the project had helped them.
– Some got so involved that they Became a trustee for HearUs

After hearing the volunteers speak, Jane white spoke a bit more on the difficulties the project had faced. She was worried and pondering how to work with organisations in order to get rid of mental health stigma.

We where shown more slides and I was impressed with a slide containing a 1000 photos forming a logo of “Reach out Challenge”.

Impressive Logo

Over the 18 months, The project has worked with 17 organisations. They also Produced positive stories in mental health and have produced many positive changes tackling mental health stigma in Croydon and helping to give those with lived experiences a voice. It is so important those who use mental health services be given the confidence to speak up about what they have gone through, but its also important that they are heard, thus the name of the project “Hear Us”. This is perhaps the same for carers as well.

Over the 18 months the project members tested How useful the project has been, so we were shown graphs produced on the slides.

Jane White reminded us to Sign a pledge with “Time to Change” so we can challenge ourselves for the better helping to combat and reduce mental health stigma.

Time To Change "Pledge Wall"

Next we were shown the latest “Time To Change” campaign which is the #wolfpack video, #wolfpack probably being the hashtag on twitter.

Dog video

I could not stay for long because I had to rush back in order to look after my mother, but before I left. I ate some Fish and Chips provided by “Hear Us – Reach Out Challenge”.

YUM!!!

Eventually Sue Baker who is the Director of Time to Change arrived to speak to us at the event. Sue Thanked HearUs for all their work and she spoke about how change is becoming to take effect. She talked about the day due to Robin Williams death on death about depression, but she feels the media is a lot more supportive of such news, because in the past there would be some ridicule and stigma coming from the media.

Sue Baker Speaks about Stigma

She feels help is possible, recovery is possible, but depression is the biggest thief of all, but it does not need to be if stigma is broken. Change is happening, but there is a long way to go, but having conversations can be tough, but it does work.

Overall I enjoyed attending and blogging about the event, as a carer I still feel I hold a lot of prejudices about mental health and sometimes I lack the patience to understand those using mental health services.  I hope such events provided by HearUs can help me challenge those prejudices as soon as possible.

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For Carers there is always some hope

The Future

Welcome to another of my blog posts on caring.  I have not posted for a while because I have been really busy in my caring duties and if you are a carer like myself, I suspect you have been a rather busy yourself.

Sometimes we carers can often fall deeper into despair, depression, guilt, anger and sadness. Sometimes we are not even sure of our roles, its like there are hardly any clues on how us carers should live our lives, let alone help those who we care for live their own lives.  I suppose being a carer does have its moments, I mean if you are a carer for someone within the family, then you are holding the family together and if you are caring for a friend or someone close to you, then you are helping to care for the community.

Still, there are times when carers sink into ourselves and wander into the dark corners of our mind wondering if there is an easier way.  This is why I want to center this blog post on the idea of hope.

There is always hope.

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At times when I was a carer, there would be situations thrown at me beyond my control. I would sometimes stare out the window of my room and literally question myself, I would question my role, question my existence and question all sorts of events.

At that time of such self reflection, I felt things turned out wrong, unfortunately when you are caring for someone with a mental health problem, you might find yourself out on a limb.  You are just not sure how things will turn out.  You  as a carer begin to seek answers from others, where you hope they may have walked the same journey as you have done.  The problem is that there are not many people out there who have walked your journey regardless of how many carers are out there.

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YOU as a carer are a unique person, with unique abilities for your loved one or family.  You want to care for them, you want to protect them and they mean everything to you, but there are times when you begin to question yourself on if you have done everything right or that have you done enough.

The thing is though that because you are still there, perhaps doing the caring right at this moment, then there is always some hope.

The past

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I have been a carer for a long time, so long that I just cannot fully remember how I even started caring.  There have been many carers out there caring longer than me.   I often wonder to myself how do they cope?  The longer you have cared for someone, the more you have been through and perhaps the more scars you have picked up.  Such scars could be emotional and perhaps such scars have worn you down physically, but they are battle scars. I admit this, we carers battle every day for our loved ones.

There are times when I look back into the past and wondered to myself the following.

“What if I just done something different?”

“What if I did not say something that upset my loved one”

“Why did I not say something at the meeting?”

” If only I had a little more time, if only I could turn back time”

I ll be surprised if there is a carer out there who has not thought the same things, especially in those moments when us carers are alone. There are many successes for carers, but without a doubt there can be so many mistakes where the road or path can lead to dead ends or wrong turns.

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Us carers are always looking out for the road signs where we hope such signs can make the journey so much easier for ourselves.

Still, you know what? The past is behind us now and us carers cannot turn back. We have come so far and perhaps put so much energy into the situation.  Us carers need to continually move forward even though we can be unclear of what lies ahead.  It is so important to avoid travelling on your own as a carer, but there are times when you feel you are on your own.

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If you have been through a lot in the past and have come this far, then it goes to show that because of your role, there is always hope gained from the past.  This goes to show you have learnt so much from the past and you are applying this to the present.

The present

The past is behind us, but as a carer the past has given so many things, you have learnt so much about your role if you have been a carer for a long time, but what about now? What about the present? Where can hope lie in this situation?

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You are a carer in your role now, but even you as a carer can question your abilities as a carer.  Even now, carers like ourselves wonder why we continue to do the things we do.  The present can contain many problems, some seen while other problems are unseen.  The present is where your actions, thoughts and role can make so much difference.

From what I have learnt about hope in providing care at this present time is that I am fairly successful in still doing my caring role.  Make no mistake about it, I have done so many things wrong in my role because I might not have thought things through, perhaps I just could not get the support.  Maybe I am just being too hard on myself, but I am still caring and I want to see my loved one continue to be protected and safe from the illness they have unfortunately have to live with.

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Because I am still caring, then there is hope for who I care for and also hope for myself.  Although not all want to continue to care in their role and that is ok, we all have important and difficult decisions to make, but we need to look at where hope might be present.

The future

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Hope for the future is perhaps one of the most important and difficult decisions for any carer out there.  There will come a time when your caring role will change, perhaps you will have to place even more energy into your role or then again perhaps with dread your caring role could stop.  This might be down to your loved one moving on or perhaps you have come to a decision that you no longer wish to continue in your caring role.

The future is often there waiting for us carers, we continue on in our role hoping our actions will make the difference, we hope that things will get better and that they will get easier.  We hope that us carers will be appreciated with the amount of time and energy we put into our roles.

There IS some hope for the future because if your loved one was without you, how much difference would this be for them?

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No one can live our lives for us and we must live with our decisions. As carers we travel the road thinking about the past and hoping present actions will make so much difference in the future, but there is always hope because of the uncertainty us carers want to make that difference, not only for ourselves, but for whoever we care for.  Hope is always there because we have come too far to disbelieve our role.  Hope is there for the past, present and for the future.