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Carers UK Forum • Feeling guilty
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Feeling guilty

Posted: Wed Oct 06, 2010 1:10 am
by Sassy
The other night (04/10/10), I was admitted to hospital overnight after I had an asthma attack and my blood oxygen levels dropped as a result of treating it. To cut a long story short, my caree was left at home to care for himself for the night.

I spent the night imagining that all sorts of terrible things had happened to him and even now, I can't shake those images.

I'd suffered with the attack for 3 days before I went to the hospital for treatment and only went because it was getting harder and harder to breathe. I knew it was a step that I had to take and that I have to look after myself to continue caring for him (even if I do have to leave him alone because no one else can step in).

So why do I feel so bad for it now?

It's a natural feeling and

Posted: Wed Oct 06, 2010 5:16 am
by charles47
It's a natural feeling and nothing to be ashamed of. I've just gone through the guilt trip over my son moving into an independent living situation after 25 years. We're still very involved in his care, but not so "hands on" now.

Your situation is very different though because of your health needs and your caree's needs, and because you waited for three days out of fear of what would happen to your caree while you were receiving treatment. That's a pretty dangerous thing to do with asthma.

It would be worth contacting your local social care team to ask for a carers assessment: as part of that you can ask for an emergency plan - a "what my caree needs if I'm incapacitated" plan. Councils have funds for emergency respite services (though not all have them they are supposed to) to step in for a couple of days in the family home, and have a care plan agreed prior to any future emergency. Keep the plan updated and you're more able to consider your own needs in the kind of emergency you've told us about.

It's worth looking into if only to help gain some peace of mind.

I think that, sadly, guilt

Posted: Wed Oct 06, 2010 9:11 am
by Scally
I think that, sadly, guilt is a normal part of the experience of caring, especially when you can no longer continue to provide care at the same level as in the past; for whatever reason. Its strange, really, we should be proud of the care we have given but in fact we often hurt inside because we all have limitations and fail to achieve our highest aspirations.
But we cant afford to hang on past the point of reason. Sooner or later elderly relatives may need nursing care, and younger people aspire to achieve some independence, its all part of the circle of life. When we are young, we accept change readily, but as we ourselves age we often cling on to the familiar even when it doesnt really make sense anymore.

I know it was a

Posted: Wed Oct 06, 2010 2:12 pm
by Sassy
I know it was a pretty dumb thing to have done, Charles... in all honesty, it just made my condition a lot worse and harder to treat than it needed to be Image I guess there was a little part of me that hoped that it'd clear up on its own if I waited a little (sometimes, the minor attacks do).

Don't you need to be in receipt of middle or high rate care to get the social to do something (anything) to help? When I last had them in to see what aids he needed, the help provided sadly left a lot to be desired and we didn't get some of the stuff I'd have preferred to just to ease some of the time I spend hauling him to his foot again.

Even now, I must confess that I'm not really fit enough to resume my caring role (still got a lot of chest and stomach pain from coughing) but I have done because I'm stuck between a rock and a hard place.

Excalibur, I think that to a degree, we all like to believe that we can cope with our caring role until our caree sadly passes away and to discover that we can't can prove to be as shocking to us as a slap in the face. I know that recently, I feeling ever increasingly like the failure for having to think of the future and the day when we are both zooming about in wheelchairs because my back is shot, too.

I don't mind admitting that it's scary. I'm scared we are just going to fall between the cracks of the system - which is why I'm fighting as hard as I am to try to get some help now, this way, the social system will just gradually have to pick up more and more of the load as my body fails.

One of the sessions I

Posted: Wed Oct 06, 2010 4:50 pm
by charles47
One of the sessions I run for carers covers the issue of "What's your biggest fear?" - and well over 90% will say "What will happen to X if something happens to me first?" (or variations on that theme).

The important thing is to take action: make sure you know what will happen and put your mind at rest. I have to say that you need to look after your own needs or the day we all fear will come all the more quickly. No nice way to say it, really.

It depends where you live as to what the eligibility for help is, but things are changing massively in social care and services are being delivered in "new" ways. The options are improving and it's worth looking into - the worst thing that can happen is that nothing will change. The best that can happen is that you will have some of the load taken off you, keeping you able to carry on caring (if you want to).

I've been fighting both social

Posted: Wed Oct 06, 2010 8:27 pm
by Sassy
I've been fighting both social services and DWP for the past 6 years trying to get him more help and me recognised as a carer on their system - I've only just gotten into a position where I'm able to get recognised as a carer in this county... once I fill the forms out (I was about to do it when I became ill).

I'm hoping that having that down on record - and a change of info at DWP (they are bound to pick up on it when they look into me) might be enough to get them thinking that he's more disabled than they first thought.

I've tried looking into alternative methods of getting help (amputee groups, asthma groups, arthritis groups, hearing loss groups) but it seems to me that no one will help us in this way unless one of us has a terminal illness like Cancer. Don't get me wrong, I've seen what Cancer does to you and I don't begrudge these people the help that they get but there are times when I'd like to see the same or similar help groups available to those who have less publicised disabilities. It frustrates the daylights out of me to know that we are a "Civilised society" yet for the most part, we tend to think of a group of... say 5 illnesses and conditions where people need help and all the rest are either left to fend for themselves or the information that carer's need on the subject is kept that well hidden that it's very late in the day where we are able to get the help that we need.

It's only the past 2 years or so that I've managed to get my caree to realise that we Needthis outside help because I can't go on like this forever. Ever since then, I've been stuck on the merry go round of seeing social services, trying to get DWP to see the side of him that's fallen and can't get up, going back to social services, getting registered as a carer. It just seems like I'm chasing my own tail here Image

One of the sessions I

Posted: Thu Oct 07, 2010 8:59 am
by Huffbag
[quote]One of the sessions I run for carers covers the issue of "What's your biggest fear?" - and well over 90% will say "What will happen to X if something happens to me first?" (or variations on that theme).

The important thing is to take action]
When I first joined it was because we had decided to sort out future care for our son. Reading some of these posts has got me a bit apprehensive. Although Paul doesn`t need nearly as much help as most of the people who are cared for by the many wonderful carers on the forum.
However, today hopefully we will be setting the ball rolling, so lets hope we will get some peace of mind eventually.

quote, Charles. My biggest fear

Posted: Thu Oct 07, 2010 9:42 am
by Lazydaisy
[One of the sessions I run for carers covers the issue of "What's your biggest fear?" - and well over 90% will say "What will happen to X if something happens to me first?" (or variations on that theme)]quote, Charles.
My biggest fear was that if I found my caring life too much,and handed over the reins to someone else, that my carees would not be cared for properly,unfortunately that came true. I couldn't cope, threatened to walk out, Carers Assessment Team told me to stay put and they would get help. The help involved making my younger son homeless(and if we said no the support would not be there for us again in future), and I was so desperate, only sleeping for around 2 hours out of 24 for weeks. My younger son was NOT looked after, and he died less than 12 months later. He had been given a flat,10 miles away from us where I could not support him every day, due to other caring commitments,and the Mental health Team which had said they would support him, discharged him.
No matter what, I cannot let that happen to my husband and elder son.The support failed, and because the other two are both type 1 Diabetics, it would be likely to fail again.(My son goes to a privately run day centre,paid for by Social Services, as their day centre could not cope with his Diabetes needs.)