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Gillette
4th May 2019, 17:47
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
4th May 2019, 18:12
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
4th May 2019, 18:20
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
4th May 2019, 18:25
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. :D

Gillette
4th May 2019, 18:29
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
4th May 2019, 18:33
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
4th May 2019, 18:38
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
4th May 2019, 19:21
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
4th May 2019, 19:46
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
4th May 2019, 19:52
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
4th May 2019, 21:27
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
4th May 2019, 22:18
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
4th May 2019, 22:21
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. :o

Gillette
4th May 2019, 22:23
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
4th May 2019, 22:29
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.

Gillette
5th May 2019, 07:41
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.

When the time comes, if you're thinking of going private, it would be wise to use an agency that doesn't do care for social services. The reason I say this is that if your carers are doing social services as well as private work, they will be pushed for time. I think you would struggle to get the service you are after.

Another point to consider is cost. I have to have two carers at a time as they have to use a hoist. At the moment, social services in Bury Council area don't charge more for two carers than just one. However, if you go privately you would have to pay for each of them. In addition, the rate full cost payers are charged is 25% less than the agency charges privately. These differences can make a huge difference to the amount you have to pay for care.

Ellie
5th May 2019, 14:11
Hi Dina,

We all have meltdowns and understand exactly how you feel and what provokes them!!! Big hug to you :D

I've bee dependent on carers since 2008, so have had a few differences with carers - we can't expect to get on with every carer, nor them with us. It IS important to trust a carer and have a good rapport with them, particularly as they get more involved with your personal care.

I have learned to nip relationship issues in the bud and to have friendly, open and honest chats with them - if that doesn't improve things, I contact their manager and take it from there. In my experience, most, not all issues, can be sorted out amicably and is often due to a simple misunderstanding left to fester....

I have twice asked for a carer to be removed from my care team.

Best of luck to you!

Love Elllie.

Lynne K
5th May 2019, 15:36
Hi Dina. I hope that today has been easier for you.
Probably about the time of your strife I was having a shitty day because of husband troubles. He decided to have an enormous rant at me. I tried to hold my own but was too upset to get my words out. It's hard enough speaking as it is. 24 hours later there's still tension in the air. He rarely apologises for anything. It's usually all the other persons fault. But the level of anger and how he threw things back in my face that he's done for me feels wholly inappropriate. He's always been this way and pulls no punches for MND. I'm seriously worried for the future. Lynne

Terry
5th May 2019, 15:50
Hi Lynne,

Hope things have calm down more. Life is extra extra hard when you can't communicate quickly and well. It is just impossible to explain things in that situation.

I think that most of us worry about our other halves and the future care.

Hugs Terry

Ellie
5th May 2019, 15:52
Lynne, I am so, so sorry for your situation.

Any chance you can get a week respite and give you a break away from him?

Big hugs to you...

Love Ellie.

Lynne K
5th May 2019, 16:26
Thanks Terry and Ellie. No respite chance at all. I encourage him to keep up his playing in music sessions, mostly Irish Trad.' He always comes back happy and much easier to get along with. He decided to not go out on Tuesday this week saying it was so he could look after me, but their was footy on so I'm not convinced. Anyway whenever he suggests staying in for me I tell him no need to and that it's more important that he keeps happy. He knows how I feel about his rants. I enjoy the couple of hours break too. I can watch some Netflix that he wouldn't be interested in.

I looked after him and his two kids (I could write a book about that) shortly after we got together as he'd had a breakdown. I was always patient and attentive, gave him space when he needed it. I put up with his kids icy attitude to me aware that they'd understandably have preferred their mum (who'd left them all 2 years before I was on the scene). Can you see why I'm disappointed and fearful? Lynne

Deb
5th May 2019, 17:25
Hi Lynne,

So sorry for your situation...Life is so unfair and I totally understand why you have had a meltdown. I can see why you are fearful and frustrated.

I am sure we all have a panic about the future sometimes and an atmosphere at home is enough to set one off. It's really hard to pull yourself up then and get back on an even keel.

Hopefully, you will feel better tomorrow as it is another day !

Thinking of you and sending hugs,
Love Debbie x

Lynne K
5th May 2019, 17:49
Thanks Debbie x

Gillette
5th May 2019, 20:44
Oh, Lynne, I'm so sorry you had such a sh*tty time with your husband. I hope the atmosphere between you is easier now. I can understand you feeling concerned for the future but please try not to worry about it - try to take things one day at a time. I'm sending you some virtual hugs as my arms aren't quite long enough to reach your side of Radcliffe. ((((()))))

Kayleigh
5th May 2019, 23:40
Hi Lynne,

Sorry to hear that things have been particularly difficult for you at home.

I agree with you, that it is good to have time apart every now and again. It sounds like you have tried to encourage your husband to socialise with his friends, so that you can have a break from each other sometimes - but perhaps he worries about leaving you at home by youself, in case you were to have a fall?

There are personal alarms we can get and sometimes OTs can provide them - if you were to get one, then perhaps that would put your husband's mind at rest a bit about you being at home without him? (Just a thought, and you might already have one anyway.)

I'm with you about needing some 'me time' every now and then - especially so that we can watch what we want on TV in peace! - after all, I don't think there are many husbands and wives who have the same taste in TV programmes!

Hopefully you both had a lovely time when you were away on holiday recently. It could just be a case of him having the post-holiday blues for a short while (not that he should be taking things out on you!).

I hope tomorrow is a better day for you and that the situation improves very soon.

Love and hugs,
Kayleigh x

Lynne K
6th May 2019, 21:12
Hi Kayleigh. Today got better as it went on. Some talking done and for a change he didn't kick off when I explained. No apology but quietly listened.

When he goes out I make sure that my mobile is always either in my pocket or in my walker so if I fall I can contact him. He's only half an hour away sometimes 45 minutes sometimes and an hour and a half the furthest away. Thanks for your message. Lynne

Gillette
6th May 2019, 21:32
Hi Lynne, I'm glad things have improved for you today and I hope tomorrow gets even better.

My partner has had a bad day today, which has made him grumpy. He apologised over dinner but the grumps continued after we had eaten. He is feeling overwhelmed but rejects anything and everything I try to do to ease the burden.

Kayleigh
7th May 2019, 00:58
I'm glad you had a good day Lynne and that your husband listened to your side of things without getting argumentative.

Sorry to hear that things didn't go so well with your partner today, Dina. Sometimes, if they are in a bad mood, nothing anyone says is going to make them feel better about things.

I suppose it's a case of taking one day at a time and trying to make the best of things - while hopefully being kind to ourselves and each other! :)

Love and hugs
Kayleigh xx

Gillette
7th May 2019, 07:21
Sorry to hear that things didn't go so well with your partner today, Dina. Sometimes, if they are in a bad mood, nothing anyone says is going to make them feel better about things.
Love and hugs
Kayleigh xx
You're right, of course, Kayleigh. I just don't feel like dealing with his negativity at the moment.

Lynne K
7th May 2019, 11:00
Well said Kayleigh, and thanks, Lynne x

Lynne K
7th May 2019, 11:02
Thanks Dina and good luck for you and he to have some nice times soon. Lynne x

Gillette
5th June 2019, 04:24
This post follows on from Terry's post about not getting upset as it doesn't do us any good.

When I began this thread I talked about one of the carers (who I called "X"). I have discovered that, following the visit that day, X contacted the care company's office, claiming that I would not allow her to move my bed, which is completely untrue. During the visit, she asked me if my usual carers move the bed, to which I replied that they don't but if she wanted to move it that was fine. When I heard about the lie she had told about me, I was livid and told the agency that I would not allow her into my home again.

Last week, I had an appointment with my consultant at the MND clinic at Salford Royal. During the appointment I became upset and was struggling to hold back the tears. The doctor was mildly shocked as he had never seen me upset before - even though I have seen him quite a few times and spent quite a bit of time with him, since then. In fact, he has commented on my positive attitude throughout the period since my diagnosis in November 2018.

After each of the three times when I have been so upset, my MND has deteriorated markedly, so I wholeheartedly agree with Terry's comment about how getting upset doesn't do us any good. I am trying to keep on an even keel because of the way the MND bites back, but it can be very difficult.

This d*mned MND doesn't play fair, does it?

Terry
5th June 2019, 11:42
Hi Dina;

Showing your emotions to a professional caring specialist doesn't do so much harm as they might help you release some frustrations.

Life an't fair, is it?

Do the best you can.

Love Terry

Ellie
5th June 2019, 13:51
You're better off without carer X, Dina - it's so important to have complete trust in each and everyone of your carers. (I've done the same with 2 carers over the years for lying)

That undercurrent of stress does cause us physical issues and eventually it can't be contained, so it eventually comes out as tears of frustration, anger, life-loathing or self-loathing :( and often when least expected :eek:

When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

Take care.

Love Ellie.

Kayleigh
5th June 2019, 13:56
Hi Dina

Getting upset might not be good for us in some ways, but I think that it's totally understandable with everything we have to cope with. I think we have to be kind to ourselves and allow ourselves to get upset sometimes, if we need to - as I don't think that bottling things up is good for us either.

Good for you, for sticking up for yourself concerning carer X! Personally, I have zero tolerance for liars!
..... and if that carer wants to move other people's furniture around, I think she should change career and get a job at Pickfords! Lol:)

It's good that carerX is banned from your home - I hope your other carers are always kind and caring and that they treat you with the utmost respect. No-one should have to put up with carers who are uncaring and can't be trusted.

I think you are a very kind and caring lady - and a hero for being involved in medical research!

Sending you lots of love and hugs.

Kayleigh xx

Gillette
5th June 2019, 14:12
When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

Take care.

Love Ellie.

Hi Ellie,

I forgot about the time when I posted! I had woken with awful foot pain and it took a while for my partner to be able to get downstairs. Consequently, I was wide awake so I had a drink and something to eat whilst on my tablet. Don't worry, I do get plenty of sleep at night. I often have a treat in the morning: my partner helps me turn onto my side and I fall asleep. Bliss!

Gillette
5th June 2019, 14:18
Thank you, Kayleigh, that's a kind thing to say about me.

Most of my carers are lovely: attentive and kind - not at all like the Poisoned Dwarf!

I don't mind getting upset, but I do mind that it seems to trigger quite a worsening of my MND, which is doing that well enough without any help!

Deb
5th June 2019, 15:36
Hi Dina,

So sorry you've had such an awful experience with your carer... It must have been difficult to stay calm as someone not telling the truth is so infuriating.

I know getting upset and stressed is bad for us but we are only human and we are bound to have a meltdown sometimes. No one can be expected to stay cheerful and positive all the time and maybe bottling our feelings up is not good for us either.

For me, it is sometimes a small realisation or thought that sets me off but I think its probably really due go an accumulation of things andI usually feel a little more upbeat next day.

Take Care and sending you big hugs , Hope tomorrow is a better day.
Love Debbie x

Sheila
5th June 2019, 19:50
Hi Dina
I hope you are ok I have been having lots of meltdowns lately. I can't hold back the tears sometimes. My husband keeps saying take one day at a time. But it is difficult.
Sheila x

shrew
5th June 2019, 20:58
sorry you had a bad time with carer

Gillette
5th June 2019, 21:24
Hi Terry, Deb, Sheila and Shrew,

Thank you all. It really is a special sort of support on here, isn't it? Thanks, everyone. :o

jonboy53
12th June 2019, 08:16
I went into the hospice again to give my wife a break. On the first night the active mattress was set too hard, and the alternating cycle was not working. The care assistants refused to change the setting because they didn’t seem to know how active mattresses work. By 3 am I was weeping with pain, and had the beginnings of a pressure sore on my ankle. From thence onwards I was treated as though I had dementia, all my complaints were treated slowly and begrudgingly. After 4 days and only one hoist to the toilet my wife discharged me - the stress was too much for both of us. In two yesr I have not had a meltdown, bbut often feel on the edge.

Barry52
12th June 2019, 09:38
I’m sorry that the hospice has let you down and this is not what we expect from an establishment meant to help. I hope your wife will register a complaint with the management as the care staff are clearly failing in their duty.

Best wishes,
Barry

jonboy53
12th June 2019, 11:00
No point now, very few are interested in what happens to us. I will be dead at Xmas

nunhead_man
12th June 2019, 12:20
Hi Jonboy


No point now, very few are interested in what happens to us. I will be dead at Xmas

I'm sorry to hear that.

However your treatment as you describe falls far below what I have seen in our local hospices with elders of mine and a friend. And far below what I would want for me when my time comes.

If you do not want to say anything yourself perhaps saying it to an MNDA person (visitor, nurse, etc) might get the message over?

Warmly

Andy

Kayleigh
12th June 2019, 18:08
Hi Jonboy,

Sorry to hear that you were treated in such an appalling way at the hospice.

Now you are back home with your lovely wife, I hope you can relax as much as possible and enjoy your home comforts. Home is where the heart is and there's no place like home (and your home has a far superior MND facility than can be found at any hospice!!).

Love and best wishes to you and your wife,

Kayleigh x

jonboy53
12th June 2019, 18:16
thanks K

Deb
12th June 2019, 18:42
Sorry Jonboy for your experience at the hospice,

It's so worrying that we can be treated like this and your wife is unable to have a break or relax. I am sure she is happier with you being home because she must have been very worried.

I hope you are comfortable at home now. As Kayleigh said there is no place like it.

Love Debbie x

Sheila
12th June 2019, 19:29
Sorry to hear you had such bad time at the hospice. Never been in one myself yet.
Hope you are comfortable at home now.
Best wishes
Sheila x

jonboy53
13th June 2019, 22:05
My wife and I are going to get a carer in maybe two days a week to give her a break. She is very small and I still weigh 80kg. I havve spent £20,000 on a proper MND facility at home. I can go to the loo and wash my hair have a a]shave and strip wash in 55 minutes. Getting harder because my arms are failing.

Kayleigh
14th June 2019, 13:14
Hi Jonboy,

I hope all goes well with finding a good carer.

I don't have paid carers at home yet, but have been looking into some of the options concerning local care agencies etc - some of the information on the following thread might be useful:-

http://http://forum.mndassociation.org/showthread.php?9111-Home-Care-Agencies-(online-search-facilities)-amp-funding-for-care&p=89315#post89315 (http://forum.mndassociation.org/showthread.php?9111-Home-Care-Agencies-(online-search-facilities)-amp-funding-for-care&p=89315#post89315)

Best wishes
Kayleigh x

jonboy53
14th June 2019, 13:35
thanks K

nunhead_man
18th June 2019, 10:05
Hi Jonboy

I just wish we had the space to create a proper wet room et cetera for me to provide for the future and to make home somewhere I would want to come back to - we moved into this place a year before I started to see the 1st signs and spent more money than we will ever get back on it before we realise what I had - late diagnosis……

Just wondering if we can afford yet more money to make it better or move on to somewhere is better suited to us - which of course means moving out from the centre here to somewhere cheaper and losing our local connections all the services we value and our local friends.

We could get somewhere smaller of course, but that would seem such a backward step.

Warmly

jonboy53
18th June 2019, 11:50
Mi bathroom is only 8 feet by 8 feet. It is upstairs so we steered away from a wetroom, wetrooms always leak. the sink is placed perfectly for a strp wash, and the Closomat Palma Vita washes my backside. We didn’t want to ever move, thats why we bought this house. Everything we have done is only temporary, nothing can stop me dying, and I try to be aware of that. I have bought myself a few extra months with a bit more dignity, but now three limbs have packed up, and breathing is getting worse. I am not afraid of dying, I just don’t want to be there when it happens.
I don’twant a peg, or a tracheostomy or eygaze
Me „what is gonna happen doc”
doc „dunno every patient is different”

What a crock - it is gonna be ghastly

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