Any experience of loneliness being a carer?

Yes, yes and yes. It's a real problem for carers.

What is the worst that could happen if you took a bit of time out for yourself regularly?

Hi guys, as Frito said earlier, "yes, yes and yes"! And it's a problem for all of us who are carers, no matter what age we are. Well meaning enquiries about the patient sometimes end up with an afterthought "and how are you coping yourself?" but it's generally with one foot already outside the door and no time for genuine interest in the answer. It doesn't make people unkind, it just reinforces the differences between those who are getting on with their lives and those who are stuck and waving goodbye to their own.

It's really tough and can be quite depressing too, especially when your charge is safely tucked up in bed and you finally get to sit down and catch your breath. That can be the time when a chat and a hug would go a long way but there's no one there to share your thoughts with and even if there IS someone with you, they may not really want to hear it. I find these days that a lot of people speak like machine gun fire, their words filling every single second, effectively closing off any opportunity to speak yourself - they also anticipate what you might be trying to say and finish your sentences for you, OFTEN incorrectly. These people tend not to listen anyway and rather than giving in to the urge to strangle them, which isn't legal yet, I now try to find a way to appreciate my own company and value the little bits of so-called "me time" by doing something that gives me pleasure - in my case it's usually baking or knitting and crochet but it can be anything that you like to do yourself. I know it's no substitute for the companionship and intimacies we are losing but it can help to preserve the sanity, for a while anyway! And what we really long for, the company of loved ones and close friends, will come, even if it takes a while.

Just try not to "lose the faith" so to speak, and as you have thankfully discovered, there are pen pals here who REALLY know what you're going through.

Frito, I spent quite some time thinking about your last post and honestly, it was a bit like reading my own diary, if you know what I mean!

I don't want to be sent out from my own home to "take a break and enjoy myself" either and it's having to bite my tongue so often trying to be gracious about such kind but clueless offers of help that drives me loopy. Another one that makes me crazy is "you're not alone you know, we're just at the end of the phone".......yeah, so long as they're not all gone away together on holidays, or out for dinner or away for the weekend or better still, on the flippin' golf course where the phone has to be turned off altogether. There are also the assurances that I can call them anytime at all, day or night.........HAH! These people are well meaning and their hearts are in the right place, it's just the brain that's slipping into neutral when they make all these generous offers of support that they only see from their perspective, not ours.

I do note from your post though that the family member/s that you care for would appear to be sufficiently mobile to actually go on outings which sadly mine is not but is there any way that you could get a day or two a week where they go to a day centre? If you talk to the doctor or the district nurse and tell them straight that you can't continue indefinitely like this and that you all need some time apart, I feel sure that they will look into it. Some of the day centres actually collect and return them which would give you some time alone, on a routine basis that you can depend on to rest up or take care of some personal chores that always get long-fingered when our charges come first or simply, whatever you want to do. All parties concerned need you to be well and reasonably happy in your role and that doesn't happen when you feel under a compliment to those who can't or won't commit to a routine that helps you.

I hope you look into it, even if you have done in the past and didn't get far, it's still worth being a squeaky wheel once in a while. I hope you'll let us know how you get on because you deserve it, we all do.

Frito, I hear you and I get it. I so, so get it. :rolleyes: And as far as ranting goes, I think anyone who takes the trouble to check out this particular forum will not so much read a rant as learn a few things instead. None of us in this situation gets any training or hands on experience prior to caring for our loved ones so anything that we can share here, is valuable beyond price. For example, my Dad is in hospital at the moment and IF he recovers well enough to come home again, his mobility is sure to be through the floor and a hoist will be in our equation for the first time. Now that I know you already deal with it, I may come back to pick your brains, if you don't mind that is.

I think this thread is a great one and thanks to the OP for raising the subject. I just wish more people like us knew it was here, there's a lot we can learn from one another and much moral support to offer.

hey just checked back here .... we are not alone : )
aint that something anyway ?

to me there are two sides to this, the practical stuff ... beds / chairs / toilets / hoists / bills / prescriptions and all the physical stuff etc and then the emotional stuff, loneliness, sadness , fear etc
for me if I'm ok emotionally ie feel loved and wanted then I can handle the practical side no probs...
when the emotional bank is weak the pressure is on !

hope you all have a good weekend

hi,
what are you passionate about ? identify that and make time ...
hopefully its something you can do with others.
when you get isolated it can be hard to make the effort to meet others, its worth it, do it.
joining clubs to meet people would not work for me either. do what your passionate about and meeting people with similar interests will follow... its the right way round.
d

harr wrote: »

Just came across this thread, I taught we were the only ones our son had special needs and i am this carer , i get so lonely at times.
I am only in my early 40s so should be living live to the full. All my friends have slowly disappeared there are two that I might meet up with maybe twice a year but they are always busy with doing proper family stuff.
My wife works full time so at least gets to talk to other adults , some weeks I might not speak to another adult apart from my wife.
I have tried the usual clubs and stuff but never seem to fit in.
I have now noticed that my wife's circle of friends has started to get dramaticly smaller over the last few years.
Sorry for the rant. ..

Thanks for replying ,love photography my self and do head up to the city the odd day with my camera ,no clubs near me though.
The upsetting thing is how quick friends drop off the radar ,have friends I know for over 20 years who I have no contact with now.
My wife and I had so many plans about retiring to the sun and traveling the world when the kids had flown the nest,then life throw us this curve ball.
I feel so guilty about how bitter I feel sometimes.

Belated greetings harr, I'm sorry to read of the difficulties you are experiencing. I guess if there were easy answers there'd be no need for this forum, I think each one of us feels our way around for a long time before we realise just how much things have changed and how lonely and isolated we have become. I got my first real break in nearly a decade a couple of months ago and I found myself wandering around the empty house like a lost soul, no idea what to do with myself! Then I put my back out and used the remaining 10 days to sit on a bunch of pillows which was the only comfortable position I could find!

That aside, I just wondered if you had looked into the Carers Association yet? I had visited their website in the past but a very sweet social worker sent me a copy of their handbook and I was amazed at the range of help and support that they offer. The handbook is very well worth reading, lots of practical tips about how to be necessarily selfish sometimes and it is clear that they know all about what carers need in order to survive. They offer some respite care but there may be waiting lists, training, support groups and even a shoulder to cry on if it comes to that!

Take a look at their website, jot down their number and give them a call. You just never know where it might lead. Hope this helps. I wish you all the best for now. J.