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.

 

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.

 

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.

 

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.

 

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

 

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.

 

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?

 

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.

 

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.

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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