It is very odd but since I heard we are going to get funding and our district nurse has already been round to sort out our care package using our trusty carers ,I have felt totally and utterly defeated ,deflated and exhausted .You would think I would be re -energised but quite the opposite is true .I just want to give up.Anyone else felt like this after good news ?
The strangest feeling: It is very odd but... - PSP Association
The strangest feeling
Written by
Georgepa
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27 Replies
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George, I think it's the after effects, nothing to worry about or think too deeply about, just have some rest, when you can, just do what you really have to for the moment. You've done so well getting the funding and should not have to fought so hard for it. Take care. Jingles 243 x
My dear Fellow you are just exhausted. It will pass, so glad you have some Good carers on board. My love to you both Flicka x
I think its absolutely normal after you've run a marathon that you need a rest !!!
Its been such a long fight. You have to get used to not having a battle in hand. Make the most of it.
love, Jean xx
George I think you had to fight so hard to get CHC, when we got it felt good, but a bit deflated, new things happening, so many people in and out of our house, you fought really hard, you have looked after V without much help, George you are an inspiration, to us careers, the things you do for V, being honest with myself, I don't think George would of been able to do that for me, I take my hat of to you lovely man X. You are tired. Take time and relax xxxx
Of course! Now you are being told, "sorry sunshine, no help available, we would give it to you if available, honest!!!!!!"
Sorry George , life is s##t, ain't nothing going to change it!
Still, you are going out for lunch in two weeks time, if we both survive that long!!!
Lots of love
Heady
No I have got my carers they are thesame PA.s I have been using and they are going to do more ,its just me having a mid carer crisis .AsPentland says you build up the adrenaline and when you stop you flop .Its reassuring though to see that other people have felt the same .Yes doubly good in two weeks as lunch is on you,shant eat for two days before.
Hi George. My take on it is that we build up so much adrenalin to fight this battle that when we at last get help we just flop. I almost flopped the week before our carers started. I think because I knew help was on its way I felt I could not carry on supporting my husband for another day but of course, like the rest of us, I did. I am now trying to adjust to not doing everything myself. We have had carers for 6 weeks and I still find it difficult. Make the most of the help, George.
We don't expect athletes after a marathon to jump up and down. You have done several marathons and need to lie down exhausted.When you feel better just punch the air! WELL DONE px
That's exactly it Loppy! Marathoners don't finish the race jumping up and down!
They are exhausted and now must pay the price of all the work they have done.....
Georgepa,
You go ahead and embrace this feeling; go to lunch in a couple of weeks and or sooner and let yourself rejuvenate by knowing you have won at least one link of the race!
AVB
Will do ,just at the moment though I feel like I have been punched .But tomorrow is another day and as the expression goes "another day another dollar ".
Gx
As well as the physical drop in adrenaline the psychological drop in not having a goal is having an effect. The waking up every day having to focus on forms, phone calls etc has gone. That part of your life has gone. Enjoy!
Janice
I think it pure exhaustion Georgepa from all the fighting! Give yourself time to adjust now to a slightly easier life! In time you'll wonder how you coped before and you'll start to feel slightly back to normal, whatever normal is?!!! X
Ah. In my case it's definitely been a double edged sword. After getting CHC without a fight it then took forever for them to sort any help. The help I get is one carer for 30 minutes in the morning to assist me with personal care for my mum. The plan is that they help me roll, finish washing, dress, hoist, toilet and transfer to chair. Timing is not working as they can't always be there at the exact time that I need them and I don't get the same girl very often, the whole thing is adding more stress. I've been told I can have four weeks respite for mum in a care home a year and I'm tempted to cancel the morning care and just ask for care to give me a break in the week (I get 2 carers for an hour on a Sunday afternoon to let me go out). I can manage mum on my own and it's less stressful what I NEED is more time off! Oh well, good luck with that eh?
I've been banging my head against a wall about carers, I too want time to myself and I'll manage the rest. I keep saying give me a day off and I can cope. Meanwhile the social worker is adamant someone should come in and help me get him up or to bed. What a nightmare it all is.xx
Oh gypsywoman1947 I so hear you. Mum has to be washed in bed and takes an hour to do. They were insisting I needed help saying that I shouldn't have to manage on my own. The idea is that I wash her and they come and help me with the heavy bits. As we all know carers can't stick to a time as they have no way of knowing when they'll get held up. I can't no matter how hard I try stand twiddling my thumbs while I wait for them to arrive and I'm usually just finishing off when they get here. If I start later sod's law they turn up early. Mum needs careful thorough washing, contractions, arm clamped to her torso and so on and needs to be rinsed and creamed to prevent soreness. All of this is causing me so much stress. I know if I wasn't doing it that she'd survive and have no problem with her going into respite but if I can smell her I can't ignore it and end up washing her again when they've gone. They're lovely girls and they do a really good job but it's not their mum and it's not a bog standard disease. Like you, I could carry on if they'd just give me something to look forward to. Sorry for the rant...I feel better now!
I know how you feel, when they ave gone onto next patient you are left to carry on, you need a complete day off. I am insisting that I have this, the latest is that it will be sorted out now after Christmas. Pigs might fly. !!! Xx
Same here, I've been told to phone back after Christmas to arrange the first weeks respite. I've bought Mum some name tags....just in case x
When you produce adrenaline during a fight, or prolonged stress, you use up lots of magnesium which is the energy 'spark plug' for our cells. The same goes for vitamin C, which is why we can feel worn out and run down after stress, and are more prone to catching colds, etc. Epsom salts in bathwater, or in a foot bath is a brilliant way to top up magnesium levels, as the body takes what it needs through the skin. Great news that you've got the help that you need, but don't forget to care for yourself too! Our fight is just beginning....my dad can't do ANYTHING for himself, but he can still chew..so he didn't even trigger the CHC assessment. I can imagine how hard you fought!
Absolutely, you ran a marathon for years. Take this time to think about YOU!! Catch up on some much needed rest and now with the help you have you can concentrate on spending quality time not nursing time...
much love
Funnily enough its not just the adrenaline thing I also feel as though someone is taking away my job !I know deep down it is daft and I should be relieved that I am getting more help and God knows there is still more than enough for me to do but someone will be taking over what I have been doing and nurturing for the past two and a half years.Its almost like being made redundant.Yes I realise it sounds quite potty but I kind of want to hang on to V and not let anyone else in .I am sure a psychotherapist would have field day .I am often just a second pair of hands when it comes to washing and dressing V on the days I have a carer in but they are my hands and they are hands V knows and for her they are are safe hands .Giving up is surprisingly hard but I'll get over it .
You're spot on. That is exactly what has happened. It is indeed necessary but , yes you have lost your job.
In time you will feel some relief but I guess we all here want to see it through if possible.
Its hard.
love and a comforting hug from Jean x
I feel the same .Read my post last post. The war is not over. The more posts I read of warriors who feel defeated including my self it has made me decide that if this is the hill I die on so be it. It is worth the fight for all our loved ones and those who come after us. We can not let those bureaucrats win. Will fight till my last breath.
.
Hi
You' ll get your mojo back!
My daughter summed it up the other day when her dad was so poorly ' mum I have'nt got any worry left'
Glad everything worked out , our journey was very similar but calm now and That is all we ask .
Julie x
Hi Julie, your daughter has summed up exactly how I feel most of the time. I have no worry left. When S has a choking fit, I ignore it, unless it goes on for too long. So many things just wash over my head. Anybody watching on, thinks I cope so well and am very calm, but it's the complete opposite, I have burnt out and am operating on automatic mode.
Lots of love
Heady
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