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what advice would you give? - Carers UK Forum

what advice would you give?

Share your ideas about the practical side of caring.
If you met someone who was facing the prospect of being a carer for whatever reason, from your experiences what advice would you give them?

what do you feel people these days aren't told about being a carer?
Don't do it!!! You will have no life to call your own and will be rewarded with a pittance of carers allowance (thats if you even qualify for it) and your own health will be ruined.

If people were told what it is actually really and truly like being a carer for someone with very severe and life threatening disabilities no one would do it. We are trapped because we love our son and he would be dead if left to the "care" of the local authority but there is no doubt that muscular dystrophy has blighted his life and ours.

i agree with eun here i would say dont do it. if there is no other option be prepared to have no money, loads of debt, freezing winters and no life
I would say that it is incredibly hard work, can be very frustrating, it can damage your social life, your financial security and your physical and/or emotional health but it can also be immensely rewarding and I would never tell anyone not to do it because we all respond to the challenges differently.

And if they did decide to take it on I would suggest that they arm themselves with as much information as possible because they are going to need it.

I did not choose for my husband to be like this but I did choose to look after him, whilst there are occasions when I wonder how much longer I can do this, I have absolutely no regrets, I have lost a great deal but I have gained immeasurably more than I have lost and, knowing what I now know, I would do it again.
Interesting discussion. I would let them know based only on staying as that is all my experience:

1) Professionals are not always right. Challenge, question, disagree as your head tells you
2) You do not get used to sleeping less, so make concessions
3) You will feel guilt if you stay
4) You will feel guilt for having to make decisions on someone elses behalf
5) You will feel guilt and beat yourself up if you make a mistake
6) You will get lonely and feel misunderstood
7) You will feel judged
8 ) You may not get any reward at times
9) Sometimes you may feel immense reward
10) Sometimes a good day makes it all worth it
11) You will miss your old life
12) You will become internally stronger and a better person for caring, even if you do not feel it sometimes
13) You may learn to see the beauty in the small things that non carers may miss
14) You will be afraid of what happens if something should happen to you and this can drive you insane at times
15) You should try to fight the authorities for as much help as possible and not take no for an answer, or don't believe the first answer
16) Your friends will show themselves and you will have a deeper sense of friendship
17) It becomes easier to see the sorrow OR joy in the world
18 ) You become more open emotionally
19) You will always do the best you could at that given moment
20) Even if they cannot tell you, speak it, show it, your caree is thankful you are there.
I interviewed a lovely couple this afternoon: they cared for "his" father. He suffered from severe arthritis, and they had opted for him (or helped him opt) to move to very sheltered housing rather than take on the main caring role. Spot on!
Yes they still cared for him in many ways, but they had a small child, they cared but they also had their priorities right, IMHO.
Little Rachet, well said for most of those!
ESPECIALLY number 5.
The first thing I'd say is:-

Image Research, research research and research again - Make sure you know EVERYTHING humanly possible to know about the condition(s) of your possible caree, yours and their rights and entitlements before you even start caring. You'd be surprised at how little the "experts" will tell you and assist you if you give them the chance - they'll even try to do you out of essential equipment that can be costly to purchase and frankly the lack of this equipment can place your caree in a life or death situation.

Image Watch your caree trying to manage on their own for a while before you begin if possible. This might sound a little mean when you first read it but I say it because it can be a real eye opener when it comes to any existing issues with adaptions, aids and NHS equipment.

Image If you spot any issues as a direct result of the step above, tell your caree and get them to mention it to the agency concerned (if you are caring for an adult). Also you need to stand by your guns with the people concerned, no matter how long it takes or if they try to tell you that your issues are imaginary. Don't be afraid to "bang on" about it to the professionals concerned yourself if they refuse to acknowledge to problem with your caree. You might even have to physically demonstrate some issues yourself just to get them to realise your point (Yes, I've had to imitate my husband's walk before just to get the NHS to accept his limb was two and a half inches Image too long) Image

The best bit of advice I try to give to all carers and I can't stress this enough is:-

You know your caree and situation the best, never ever, let anyone try to persuade you otherwise in any way, shape, or form
My advice would be simple ....
do you truly and unconditionally love the person you will be caring for?
If so, then do it.
If not, look around for somewhere to dump them, then get on with your life.
BEFORE you are opted in as a carer, which the 'system' will do behind your back if you are not careful, be aware of what caring means. It can 'cost' you everything you think you are and all you think you have. From your friends and family, to your sleep patterns and sanity.

Get as much help as you can find. Pride goes out the door.. begging is what the system allows.

But if, as so often happens, the caring comes from an unexpected or unforseeable event, and the person you care for is someone you love dearly, then none of these things will matter. You just roll up your sleeves, take a deep breath and do all you can for the person you love. And would you really have it any other way?

Even when objects and abuse may be hurled in frustration, bot at you and by you, even when life, your life, seems to be disappearing down the cosmic plug hole, there is still love and laughter to be shared.

It is not easy. It is thankless. The government guidelines look wonderful on paper and are useless in practice. You will find that you are stronger, more resilient, more resourceful and more valuable than you have ever given yourself credit for.