Angry
Apathetic
Bored
Depressed
Frustrated
Isolated
Self Recriminating
Stressed
Trapped
Unappreciated
Unloved
Worn Down/Worn Out
These are just some of the emotions that are commonly shared by carers. As a carer myself, I have two full time jobs, one is a highly stressful managerial position and the other is an even more stressful position as a 24/7 carer to my wife. Both jobs require me to be on call at all times and both "mistresses" are resentful of the other.
I am sure that many of you who are reading this are aware of the old anecdote about stress being the battle between heart and mind when you know that you are unable to give some b*****d a good thumping even though they really deserve it. Well this is a regular emotion for me so it is a good job that I am so laid back that I am nearly horizontal.
For those of you who are thinking that this is not what you signed up for then welcome to the club. Below are some of the emotions that are so difficult to explain to people. Some have useful tips or comments and if you read them all you will begin to realise why this web site was created. Now please don't take this the wrong way (I hope you will appreciate where I am coming from here) ... Go, get a life ... oh yes, and while you're at it bring one back for me ... PLEASE!!!!
Most carers get angry about the situation they find themselves in at some time or another. The French have a wonderful expression for this "C'est La Vie" or that is life. Life is not fair and your average carer will know this first hand.
From time to time apathy attacks everyone but in the case of a carer this can become a real threat. For example, if you can't be bothered to clean the kitchen one time then fair enough but if this happens for a few weeks then it will soon get on top of you. The next problem will be the risk of food poisoning. I think you can probably see where this is going by now. Next you are too ill to do it and so on. Unfortunately, there is no easy answer here but it is my hope that having the ability to share with someone who understands will help to lessen the load.
Many carers will tell you that they don't have time to be bored. This may be true but most will get bored with the same old routine. Believe it or not a carer is a person too just because they live with an illness it doesn't mean that they themselves are ill. The vast majority of carers have little or no social life and this is a bad thing. You need to have some time out for yourself, the next question is what to do and how. The what is up to you although hopefully this site will put you in touch with people in your area who you can meet with. The how is not as tricky as you might think. In the case of someone who requires 24/7 nursing, you can usually rely on friends and family to help out for a couple of hours. If this is not the case then there are a number of volunteer agencies that can help. As an ex Red Cross man, I would suggest that you contact your local branch and see what they can recommend.
Mild depression is bound to set in at some point. Again, being able to just chat to someone who understands can really help.This is what Karer's Korner is all about, finding ways to beat the blues.
Frustration can become a regular part of the carer's life.
Here is a little anecdote from my own experience. I had spent a very busy day at work where I had been on my feet for about 9 hours. I got home and just wanted to put my feet up for an hour or two. What greeted me however was the expression of I've had a really hard day, I've had to get up and let the cat in five times already. Can you let it in this time? If you are anything like me then you can't start shouting at someone who is ill even though that is how you feel. On top of this can come sexual frustration - is it any wonder that so many partnerships coping with illness end in divorce?After a relatively short period of time, many carers can end up feeling very isolated. In my experience, married friends will tend to get on with their lives and you will quickly loose touch with them while single friends will usually stay around. These single friends will normally be the ones to try to get you to go out for a drink or something similar. This is great but they tend to be the ones that have no real understanding of the situation. It is an unfortunate fact that unless you have lived through being a full time carer then you can empathise but not fully understand. This can also be true between different types of carers to some degree but there is much more common ground than you might think. It is surprising for example how similar the experiences and emotions are between a woman looking after a bed ridden husband and a man with a terminally ill child.
A feeling of selfishness when wanting something for yourself is quite common. Because most carers put other people's needs before their own, this will make them prone to this sort of thing. As I have said before, you are a person too and it is right for you to have needs and wants. Try not to feel guilty because you did not do your best in a situation, you are not superman/superwoman. Because of the nature of a carer you can be sure of one thing - people will put on you. One of the worst examples of this I have seen is the government. The carer's allowance, if you qualify for it, is pitiful and to my mind the government should feel very ashamed of themselves. So what has this to do with self recrimination? Well the carer will normally feel that they should be providing for the person they are caring for and they are failing miserably ... aren't they? Again, the answer is no, No NO! Try to turn these self recriminating thoughts around and get angry at the situation instead. It is most unlikely that this will change anything other than your own perception but that can help you to start functioning in a better way.
Stress is a day to day companion to any carer. You can't get away from this fact but how you handle the stress is what matters. The first step to combating stress is to recognise it. The second step is to manage it. At the end of the day, you can only do so much. The trick to managing stress is to realise this and to learn to prioritise and to delegate responsibility where possible. This is a pretty basic thing that I have learned though being a manager. Don't even try to do everything, I used to but I soon found that it was impossible. Take a little time to think about what needs to be done and prioritise the tasks into Major, Normal and Minor importance groups. In the Major group, you need to do those tasks or at least ensure that they are done. Normal tasks should be dealt with before they become major and Minor tasks can be left if necessary. Using this simple process should help you to manage the stress involved in being a carer.
We all need a change of scenery from time to time but carers will probably not get this very often. The situation, the finances and many other things will conspire to make carers feel very trapped indeed. A little bit of escapism is needed on a fairly regular basis. Personally, I find a good sci-fi or action film and some quiet time on the internet helps a lot but when the sun is shining and I see couples out enjoying themselves, that is when the situation starts to grind me down. That is one of the reasons I created this site. The thought that I could chat with others who know what I am going through and possibly to meet up for the odd drink at the local suddenly became very appealing.
The vast majority of carers do not want thanks for what they do but that doesn't mean that they don't need it sometimes. Well folks, just living through it myself means that I have a real appreciation for everything you do. My gift to you is this web site and I really hope that we can all get something really good out of it.
Without a doubt, we all need to be loved and carers can often miss out
if they are caring for their partner. It is also true that in this case, love will normally have moved to a much deeper level. There is no easy answer to this one and no amount of platitudes or "pie in the sky" ideas will help. If you are in this place at the moment than you have my deepest sympathy and the only thing I can say is that you are not alone. I doubt very much that talking to someone who knows what it's like will help either, it is a sad fact of life. The best we can hope for is that we can find something to take our minds off it for a little while.I suspect that we all reach this stage at some point. For me it is usually on what I call brainFriday because with my job(s) come Friday my brain is totally fried. When you reach this point, you either need a break or you need some light relief. If it's light relief you are after then this should be a good place for you. Any other carers on line should be able to relate to you and that has to be good. If, however, it's a break you are after then for crying out loud, stop reading and go curl up with a good book or something before you crack! Remember, you have needs too, this just shows that you are still alive so go on do yourself a favour and take what you need while you can.