Meltdown

[Gillette]

I need a bit of a rant.

I feel completely wrung out this afternoon. I've had a cr*p day and everything has just got on top of me.

A few weeks ago I had an unpleasant experience with social services and the care agency which prompted my partner to lodge a complaint about the social care officer at the council who had rung me. I can usually deal with stuff like that easily but this issue really upset me and, in fact, has left me feeling shaky.

This morning I had different carers from the usual two. I think one of today's carers [X] was at the root of the incident above. Whilst the carers were attending to me, X began grumbling about the size of the area where I now have to sleep, the bed having to be moved, me not lying flat on the bed - and anything else she could think of to moan about. It just got me down because I have been working with my OT to try and make things as easy as possible for the carers. Also, I have deteriorated to a point where there is very little personal care that I am able to do, and I am finding it difficult to deal with that. Her grumbles just brought back the nasty incident of a few weeks ago so, all in all, I was feeling very low.

Later on my partner was helping me but he started grumbling and getting moody and I ended up having a meltdown. I really was very upset and it hit me like a ton of bricks how reliant I am on other people.

The attitudes of X and of my partner make me wonder if I am behaving like a diva. I certainly don't mean to. I try to do what I can to ease the way for those caring for me but it seems as though anything I do just makes it worse and makes me a monster. Don't they realise that I have a disease that is stealing bits of me every day? And it's bl**dy difficult to put up with.

OK, rant over. As you were, boys and girls.

[Kayleigh]

Hi Dina,
Sorry you've had such a bad day! Please don't apologise for having a rant about things - you are not being a Diva and I completely understand why you are so upset.

This forum is where we can have a rant and express how we feel - if we can't do it here, then where can we?

MND is a pain in the butt (putting it mildly!!!) and I can empathise with you about how difficult and upsetting it can be to deal with every single cruel challenge it chucks at us.

The personal care issue is probably something that every single person with MND finds particularly difficult to get their head round. Personally, I hate losing my independence and having to rely on other people to have to do things for me! Please know you are not alone in the way that you feel.

You are part of this caring forum family and we are all here for you!

Sending love and hugs,
Kayleigh xx

[Terry]

Thanks Dina;

I've ended up screaming or howling at times past with frustration, and I don't have any outside carers.

So for you, not having my experience and being in a more challenging position, it's not surprising that you are having problems and having a meltdown.

Trouble is that getting upset and etc. does not do us any good. It is so hard to accept wrong things but do try to KEEP calm. Maybe that carer would pay for your room to be extended, if it upsets her so much?

Most of us don't have rooms the right size or design so everyone has to bend a little.

Any carer bigger than a size 12 would not fit in my room. That's sexist, so a 34 inch waist.

Hugs, Terry

PS:- Perhaps next time get some stockings and suspenders out and ask them to put them on, I might do that next time I'm in the hospice. Just to keep Doug happy.

[Gillette]

Hi Kayleigh,

Thank you for your encouragement. I had my rant on here because I was pretty confident that others would understand.

I certainly feel better for having got it off my chest.

[Gillette]

Dear Terry,

Some of what you said was what I had been thinking. I'm not sure about the stockings and suspenders, though. I don't want them to think that I'm on the other bus!

[Deb]

Hi Dina,

I am so sorry you have had such a terrible day. Please don't say sorry for having a rant because this is the place to have it. Like Kayleigh just said, we are here for you. I am sure we all have a meltdown occasionally . We have so much to cope with and when something goes wrong , like an unsympathetic carer it can be the straw that breaks the camels back ( I think that's the right phrase )

Losing independence and relying on other people is so hard and frustrating. I know my husband finds it very difficult because he hates to see me struggle and he is also expected to be telepathic!!! . Of course we snap sometimes as we're only human but as he always says, we're in this together.

You are certainly not a diva , Dina ... I hope I got that the right way round. I hope tomorrow is a better day for you and that you have a peaceful evening.

Love Debbie x

[ccinjersey]

Hi Dina

That sound so upsetting for you.

Why is the carer grumbling? Isn't this her job? Can you fire her ? and replace with someone that actually cares. It seems so unfair to me that you have to worry about making things easier for her when she should be making things easer for you.

Maybe you or your partner can lodge a complaint with the agency she comes from and request never to have her back in your home again. Thank goodness she is not your regular carer but unfortunately someone else has to deal with her unprofessional attitude as well.

Don't let her get you down, she is in the wrong and in the wrong profession, she has no business caring for people when she obviously doesn't care.

Remember to be gentle on yourself you're doing the best you can.

Wishing you a better tomorrow

CC xox

[Doug Carpenter]

Dear Dina

I am so, so sorry to hear about your day. Big hug!

Thank you for sharing. This is exactly the place to rant. You’ve been put in an intolerable situation not of your making. Your feelings are entirely justified and in no way unreasonable.

As CC says, don’t beat yourself up.

Another big hug!

Doug x

[Sheila]

Hi Dina, so sorry to hear about your bad day. Don't worry about having a meltdown, I have them quite regularly. I have no carers coming in, it's just my husband. It is not our fault we are in this situation, and it gets me down I can't do the things that I use to love doing. I hope you have a good day tomorrow.
Take care
Sheila x

[Kayleigh]

Hi Terry,

I like the line in your post 'trouble is getting upset does not do us any good'. This is something I have been told by the men in my life, many many times!!

I know that what you say TC is logical and sensible (as always!) but .......

..... I'm one of those emotional females that cries at anything - happy tears, sad tears ... (basically most men's nightmare!!).

A typical scenario (from my experience anyway):-

Emotional female crying (i.e me).

- Male response (i.e. my hubby, my brother):

"Calm down, why are you crying? what's the point? it's not going to change anything! If there was anything I could do to take your MND away, then I'd do it - but I can't. You crying and getting upset can't change that!"

- Female response (i.e. my mum, a female friend of mine):

"Ah, what's the matter? Let me give you a hug. We'll have a nice cup of tea and you can tell me all about it".

I agree that it's not logical to deal with things by getting upset and shedding tears, but for some reason my emotions are not programmed to think that way - and I find a bit of tea and empathy goes a long way to help me deal with things.

When it comes down to it Terry - you are a logical and practical man, wheras, I am an emotional and creative female - there's bound to be a difference of opinion about how to deal with things sometimes.

But there's nothing like a bit of debate to keep things interesting! - Just as long as you know that females are usually (correction - ALWAYS!) right! LOL

Love and hugs
Kayleigh xx

P.S Typical man TC - bringing stockings and suspenders into any conversation! LOL

PPS. I always like the advice and tips you give - especially concerning the practical side of things!

[Iron Will]

I feel for you.
it's a topical topic for me this as carers are now being discussed for myself. I was told yesterday that there are two grades of carer, standard NHS and a "premium" team that you pay a little more for. is this true? at the moment my wife is my carer.

[Gillette]

I feel for you.
it's a topical topic for me this as carers are now being discussed for myself. I was told yesterday that there are two grades of carer, standard NHS and a "premium" team that you pay a little more for. is this true? at the moment my wife is my carer.

Hi Iron Will,

I haven't heard anything about two grades of carers. Who was it who told you that? Also, where do you live? I'm just wondering if you're in Scotland as the system is a bit different there.

[Gillette]

Dear Dina

I am so, so sorry to hear about your day. Big hug!

Thank you for sharing. This is exactly the place to rant. You’ve been put in an intolerable situation not of your making. Your feelings are entirely justified and in no way unreasonable.

As CC says, don’t beat yourself up.

Another big hug!

Doug x

Hi Doug,

Well the day has finally improved as I have, not one, but TWO big hugs from you! Thank you.

[Gillette]

Thank you, everyone, for your support - it was just what I needed.

I've decided to write off today - it simply hasn't been worth the bother.

[Iron Will]

Hi Iron Will,

I haven't heard anything about two grades of carers. Who was it who told you that? Also, where do you live? I'm just wondering if you're in Scotland as the system is a bit different there.

I'm in Manchester. I was talking to someone about beds, hoists and carers when they just said there were carers and carers. the feeling was go private . not ready yet but I thought it was worth noting. I'm still in reasonable nick so no rush, of course time will tell.