Good morning......a question for carers.

[Carer16]

Hi all. Thankyou all for replies to my posts. Reading them and others posts on here I have felt not so alone and dare I say it less guilty and selfish

Nothing prepares you for the health issues and battles but you can knock on doors etc ..however, who is there to help with your feelings of this dramatic change to your life?

We had the continuing care manager out this week. Very nice lady but in four and a half years, some of it very intense, I don't think I've actually been asked how I felt..about anything.

I'm currently sporting a rather fine cold, and she said oh dear you don't sound too good how are you ...well that was it .

Chance seized. She got the lot.

I said I felt there was no where to turn.

I'd tried a few places but no one I'd met seemed to understand the loss and readjustment process .

I felt I fight hard to get best for hubby ..but like now..I'm on my "arse" with this cold..first one in many years.... And it's tough.

It's hard enough to drag yourself out of bed..never mind the worry of having the "responsible adult"tag

At the end of the day ...it's all about hubby's needs but as I'm his main carer... Don't I need to be listened to

So. Outcome .. my hours at night... I'm able to use six hours that I don't use at weekends as one extra hour per night(plus they will add one on)

This will take off a burden for me.

Evenings are not good here... Can be fine one minute then it deteriorates in mood rapidly. Like flicking a switch

So my very selfish way of dealing with this....get carers in an hour earlier.

I will still do personal care and he will be ready for bed. Infact probably be in bed still as he has been trying an earlier routine to see if it helps....

I cannot tell you the relief.

I hate the attitude I have but I've really tried. The past month has been conflict at night and he's quite nasty with it. As there seems to be no resolution and I feel it's heightened by tiredness then let's try this. Step back and let the carers do something.

But, I want to say this.

Joining here gave me the voice to do this.to stand up for me, although it will be beneficial to both of us.

Do thankyou.

And to anyone else....look after yourself.

You are as important as everyone else.

As someone on here said. Don't lose your identity, as it could lead to resentment.

I can see why. What do you all think?

X

[Lynd]

I am so glad you managed to get the eXtra support you needed..

It is good to use the forum to talk about how you are feeling about things.

Caring can get so hard at times.

I have a cold that has dragged on for ages. It has zapped all my energy so I feel for you. I have got by just doing what I have to do and sleeping at odd times.

All the best to you.

[claretand]

I am a carer for my wife, tomorrow is the first year anniversary of her TBI, she has done remarkable well with her recovery, we run a small retail business and I am asked daily how she is doing, I have the same question at least 3 or 4 times a day and have done for the last year. A year ago her life changed forever, but hey so did mine, as carers for our loved ones we are almost invisible personalities, just a voice for our loved one, thrust into a area where we have no experience, sink or swim with just this site as a life band. I have no resentment cos I love her dearly and I know roles reversed she would do the same for me. I hear your message and fully understand

[Jacki66]

Hi, what an amazing post. I also have a cold and it is utterly draining, especially when caring full time. We just plough on don't we? What a mess this whole caring debacle is in.

[Froggiefrog]

Thank you for taking time to post.

The fact that what you had to say was focused on as much on encouraging others than with your own issues proves, beyond doubt, that 'selfish' is not a word people are ever likely to use towards you. This is not to belittle the importance or impact of how you feel about yourself, but hopefully, the fact that you feel you are gaining something by sharing your experience here is a positive you will build upon.

At every opportunity, I will repeat that many of those of us lucky to have people supporting us DO know how lucky we are. In some ways, we are also responsible for being grateful to carers whose loved ones are not able, for whatever reason, to show their appreciation.

My other half has been out today with a very old friend. I am probably as pleased as she is that she was able to take up the opportunity to do this, simply because running around after me, working and sleeping is most definitely NOT what I want her life to be about.

I fully understand that those who care for us can be made to feel like they are invisible and feel a loss of identity. Whether that is more a symptom of how society as whole views what you do, rather than the individuals benefitting from it, is another question entirely, but I will continue to big up our heroes, as the opportunities arise...and unashamedly so.

Take care of yourself, use this resource as you see fit and remember, you are very special.

K