Stressful times with DWP…….

Update 14th November 2016

@raspberrytalk status from Saturday

Brown envelope just dropped through my letterbox from DWP. Been drea...ding this since my home assessment 25/10/16. Hands were shaking as I opened it ...... 35 points for care and 22 for mobilty!!!! OMFG! I am stunned. Enhanced rate for both. What a great early xmas present. And all it took was my wife screaming and stressing for a home visit with constant phone calls to the DWP and Atos (I can't use the phone!), getting our MP involved and having a massive panic/anxiety attack on the day and self harming that left blood pouring down my arms! I would go out an celebrate if it wasn't for the fact I can't go out much and being around people terrifies me!

Update 5th October 2016

Update on ATOS and DWP for anyone that is interested, wrote to our MP had nothing from her at all. She obvisouly does not give a hoot anymore she's got what she... wants now. thanks @patel4witham

Spoke to the PIP Customer Relations guy and he informed me that there is nothing coming back from the specilsts and anything that is coming back is just saying not been treated here since 2012. Nothing from Dr Castle, so much for his surport, G.P has only sent letter of surport of a home visist. DWP are now passing the blame back to ATOS by saying it's because of one of there Healthcare Proffessionals that hubby has a caution on him and this is why they will not do a home visit.
Writen back to DWP about this, waiting for response, the guy from ATOS was very suprised when I told him what DWP have said.
I'm really concerned that we are going to have to attend the Re-arranged assessement for hubby next week, I just know it's going to end up with a trip to A&E.............stressed

Update 16th August:

PIP form has arrived today and giving hubby untill 10th september to return them.


Any regular readers of my blog know about the problems both me and @raspberrytalk have had dealing with the DWP. We had a 2 year long battle with them and even had to go to a tribunal so @raspberrytalk could even get his DLA - being treated like a common criminal, basically branded a liar - this also ment I could not recieve Carers Allowance! When I did finally recieve it they did not give me any back pay, so again we had to write to them argue the fact that it should of been back dated like the DLA. This did get sorted but all this stress took its toll on both myself and @raspberrytalk.
I do also think all this stress has been a contribtunting factor in causing mine and @raspberrytalk relationship to become so fragile and broken.

For those of you that are not regular readers it would be worth you reading this post (The Day my husband became a child) as it will help you understand how much stress the DWP cause and how that stress affected my husband's mental state.

So now fast forward to present day and, as some of you may or may not know, DLA is being changed to a new allowance called PIP. We received a letter asking if my husband would like to claim PIP on 23rd July (letter dated 19th July) - I really don’t understand why we get these letters so late…
Anyway, because this letter had arrived on a Saturday there was not much we could do because the claim line is only open Monday - Friday.
The letter says you HAVE to phone them to start the claim. I was not happy about this because @raspberrytalk does not use the phone due to severe anxiety and other mental health problems. I also have mental health problems that make it difficult for me to use a phone. So as you can imagine my stress and anxiety levels went very high because I knew I would have to phone the claim line … I’m not confident using a phone either because I do avoid using it, but if I really have to I do.
@raspberrytalk could see the state I was getting in because I would have to use the phone. It’s not an easy thing to explain how and why I get in such a state about using a phone, so I’m not even going to try. I've always been like it since I was a kid.
To cut a long story short @raspberrytalk went on the DWP website and found out that you can send in a written request for the PIP claim forms. Fantstic! So we sent the letter which was signed for on 26th July. It was now just a case of playing the waiting game…
…
…

1 week went by and not recieved anything.

...
...

Week 2 went by and still not recieved anything.


Meanwhile, as we were waiting, my anxiety and stress levels were steadily increasing to breaking point. I have been so stressed it caused me to have a spell of IBS and feeling sick. It has also caused @raspberrytalk to have a bad spell of IBD. It has also caused strain on mine and @raspberrytalk relationship.

Then we received another letter on 6th August (dated 2nd August) saying that they had not yet recieved a request from us to start a PIP claim.
As you can imagine this caused myself and @raspberrytalk even MORE stress! As a lot of you know @raspberrytalk has a lot of mental health problems and all this stress is making him worse. It is also taking it’s toll on me and having to take care of @raspberrytalk is becoming more and more difficult for me to deal with … sad but true.

So I caved. I had been throwing up because I was getting so stressed waiting and on 10th August I phoned because we still had not recieved anything, except for the letter saying they had not receved a request for PIP.
Even though I was calling on @raspberrytalk behalf, they still demanded to talk to him saying they couldn't complete the process otherwise. I managed to coax him into saying yes when needed, although he was in a right state ..... how do they process claims for people that are unable to talk?

So anyway, after weeks of stress and anxiety it was finally sorted ... or so we thought.

Guess what arrived today (13th August)? The response to our original written request! The request forms needed to request the PIP claim forms (dated 7th August). Yes, you have to complete a claim for in order to get the PIP claim form!

So it only took them 3 weeks to send the request form, which is basically the exact same thing that the lady on the claims line went through with me … word for word. Well at least the claim process has now been started ... but why on earth do the letters arrive so late and why are all other benefits going online, but not PIP? When hubby first claimed for DLA it was an online form, then a downloadable pdf .... and now they pigs ear of a joke. Apparently the actual claim form is 40 PAGES of questions and there is no downloadable version of the form, so all answers have to be hand written! Let's hope all these sick and disabled people don't make any mistakes! How long would it take to get another copy of the form!!

I really want to write a letter of complaint, but I know this would be pointless to do because the @DWP really are not there to help people and they just don’t care - because they are told and paid to not care. Because it is run by the goverment and they pull all the strings and are killing people because of the stress they're causing people. And people are commiting suicide because of what the @DWP put them through - and I know the @DWP will deny this, even though it was proven in court!
@DWP have caused so much stress in this house which caused me and @raspberrytalk to have a massive argument yesterday. It resulted in @raspberrytalk cutting himself with a carving knife (thankfully just a scratch as he could barely hold the blade), becoming aggressive with me and when the aggression passed by he ordered me to leave so he could kill himself. This is something he struggles with everyday, like his Rage Control outbursts - which are scary, but he would never hurt me - but each time this happens it damages our relationship.
So thank you @DWP for coming so very close to making us split up and making me so ill this last 3 weeks and making @raspberrytalk even more ill than he is already ……

YEAR OF HOPE, 2015……….

I think it was back in late 2014 that @raspberrytalk got to see yet another psychiatrist, but this time the guy seemed not to be shocked when @raspberrytalk had an outburst (punched the wall!). He also seemed to have a very thick folder full of all the reports done on my husband by other head Drs. I think this folder also included all other medical reports done on @raspberrytalk, which me and @raspberrytalk were supprised by. After what seemed like forever of talking to this head Dr he said he could see me and @raspberrytalk needed some kind of help. He said he’d talk to some collegues of his and get one of them to meet us at a new appointment. Both myself and @raspberrytalk felt that finally he would be getting some real help with his mental health issues. He was not offered help before because of his rage control issues, but this new head Dr was prepared to see past all of that and try to find a collegue who was also willing to help.
It seemed like ages before the next appointment. I was sort of looking forward to this one because I felt like it was the start of some real help for @raspberrytalk, which would also mean less stress for me. Having to deal with @raspberrytalk outbursts is very stressful and always takes alot out of me physically and mentaly. I was also hoping he’d get help for his panic attacks and anxiety, which were both getting worse and I was struggling to cope with @raspberrytalk when he had these spells.
The second appointment seemed to go well and both head Drs seemed to want to help. The second head Dr wanted to make another appointment so me and @raspberrytalk could talk in more detail about @raspberrytalk medical history and anything else he felt would be relevent.
@raspberrytalk and I were understandedly frustrated with the fact we’d have to yet again talk about stuff we had already spoken about with other head Drs. It seemed as though that all we ever did was talk with these head Drs and then never got any further. However, this time seemed more hopeful … or so I thought.
I think it was late April 2015 before we got to see the second head Dr again. @raspberrytalk was very anxious during the whole appointment, he even started scratching his arms and making them bleed. I kept trying to stop him but, even with me doing this, he will still do it. The head Dr even spoke to me and asked some difficult questions, which I answered honestly and I even ended up crying. By the end of this appointment the head Dr said he thought we needed joint treatment because from what he’d seen and heard it was clear that what was happening to @raspberrytalk was affecting our relationship, which is true. Being a carer for my husband has changed things and having to cope with his mental health problems has put a serious strain on our relationship. The Dr said he would talk to one of his collegues - for God’s sake! How many more head Drs did we have to see before we got any help?
By now I was getting so frustrated with the fact that we had to see so many different head Drs, but I was also feeling a sense of hope and thought we were really going to get the help we so needed.
So here we go again with the telling of @raspberrytalk medical history and any other relevent information. This usually takes up most of a session. The new head Dr seemed more interested in what I saying rather than @raspberrytalk, she was basicaly a family/couples therapist. @raspberrytalk said to me “you know this is going to turn into couples therapy”. I told him maybe not.
To cut a very long story short, we must have had at least 6 sessions with this lady and everytime I mentioned getting help for @raspberrytalk Rage Control issues the subject was avoided by them and not spoken about. It was at this point I started getting a sinking feeling because I was realizing @raspberrytalk was right and all this lady was doing and offering was couples therapy.
I think it was at our 5th session that she admitted she could not help with the rage control issues and gave us a contact number for MIND. Well I contacted them and they no longer offer help for anger management either. However, they did give me a few links to some local therapists, but they all charge for their time which we can not afford on benefits.
I can’t even begin to tell you how frustrating all of this is for me and @raspberrytalk. I had really hoped 2015 was going to be the year we got some proper help for him. I feel like the whole year was wasted and I also feel like the system has failed @raspberrytalk once again. Unfortnately it’s only going to get worse with all the cuts to the NHS and benefits. I’m really at a loss as to where to turn or who to talk to next.
Well, at least we got to have a holiday last year … but even that ended up being a disappointment … just read this and you’ll know what I mean.
The couple’s therapist has now signed us off and we are still struggling with @raspberrytalk rage control issues, panic attacks, agoraphobia, PTSD and anxiety as well as all his physical problems. Just what the hell do we have to do before we get some proper help? … I am really struggling with dealing with his mental health issues. I don’t want to sound selfish but, I have my own health issues to deal with too ...
Anyway, I’ve written to our GP in desperation and hope that he will be able to help or at least be able to referer us to someone who truly can help. I only just sent this letter so it’s a case of playing the good old waiting game …… which, to be honest, just frustrates me even further.

Take care of each other
Carer’s Vent

DARK THOUGHTS………..

So from time to time most of us will have thoughts of hurting ourselves or of ending it all ……… well if you haven't you’re lucky and may not be able to get your head around a lot of what I'm going to write in this blog.
Before you carry on reading please be aware that I am going to be talking about SUICIDE.
I saw this In the End, There Is Only Room for Love on Facebook this morning which was a letter a woman has written to her husband who committed suicide.
I almost cried reading what she had written for several reasons, the main being that @raspberrytalk has a daily battle with his dark thoughts of committing suicide. Some of you may think this makes him weak, but it’s not that black and white and until you have had these sort of thoughts you will not understand ….. it’s hard to explain and I'm not even going to try.
I’m finding this blog very hard to write (deep breath) but I feel I need to write it because there is so much stigma attached to such a subject and there needs to be more awareness of such things.
So why do people have these thoughts? Well as someone who has also had these thoughts it was all part of my depression. For @raspberrytalk I think it’s separate from his depression and it’s a monster that enters his thoughts mainly at night. He even knows how he would end his life (he has just told me he has several options!). As he was saying this to me he sounded and seemed very calm and normal. This is one thing I can’t get my head around - the fact he’s calm and talking to me as if we were talking about the weather.
Whatever the reason someone has for wanting to end their life, we have to remember our love or friendship is not thought of any less just because even though they have our love and friendship that person still has thoughts of ending their life. They’re not being selfish or trying to get attention, having Suicidal thoughts is not a choice, just like any mental illness.
So earlier I mentioned the letter a woman has written to her dead husband. I really hope I will never have to write such a letter, but I do know if I had to it would be full of mixed emotions. I would also feel that I have failed my husband somehow and would question why my love and the love of his family and friends was not enough to make him want to stay – even though I know I shouldn’t!
We need to bring more awareness of Suicide as much as we hate talk about it I think we need to.
CALM ZONE
SUICIDAL FEELINGS

RESPITE

As carers it is just as important to look after our own health. Having time for yourself is very important and while you can do this in little bits throughout the day while still looking after someone, you also need to have time away from actually being a carer or time away from the person you care for.
There are different ways this can be made possible. DAY CARE CENTRES are the most common and these are usually funded by your local council, so there usually is no need to pay a fee (or very minimal fee). Unfortunately these centres are different depending on where you live. A few years ago a very nice lady came to see me and @raspberrytalk to talk about the possibility of us using one of these centres. After discussing @raspberrytalk issues it was clear to me that the centre was neither able, nor willing, to look after someone with such complex issues. So that was that…………bugger!
Another way of getting some respite is getting home visits by a Health Care Professional. Again availability is different depending on where you live - also this is a service you have to pay for. Some carers take on part time jobs to fund this if they can, but this can effect your Carer’s Allowance depending on how many hours you work. The other way to pay for this service is to get a Grant from a charity or your local council (this is sometimes called a direct payment). I do believe these will be changing this year, a lot of areas will be losing or having services such as these cut, all thanks to the Tory government……….
I contacted these guys, Essex Respite, who offer respite for carers of someone with a mental health condition. I thought this was great, but what I didn’t know was you needed to pay for this. I was unfortunately not in a position financially to pay for such a service and I don’t think the council would have help as we had already had big grants for #raspberrytalk ramp and my driving lessons.

So no real respite for me
But, if I did get respite, I would like to spend the time with my best friend … @raspberrytalk !
A lot of people think I’m strange because I would like to spend respite time with @raspberrytalk. At the end of the day it’s not him I want a break from, it’s a break from being a carer!
Maybe this is where I’m different from other carers, I actually miss just spending time with @raspberrytalk, being his wife. I never seem to be able to switch off from being a carer. Damn it!

Take care of each other,
Carer’s Vent

@carersweek2015
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Technorati Tags: respite,direct payments,mental health,carers week,rethink,day care centre

More Awareness Please……….

 

I personally think there needs to be more awareness of mental health conditions.

Whenever something is in the press they usually talk about DEPRESSION, DEMENTIA, Alzheimer's, which is great because we do need to be educated about these conditions, but there are so many more Mental Health Conditions. We never hear anything about the Cluster Conditions. My husband has what they call Cluster B. Even as I'm writing this blog I'm having trouble finding links about the Cluster Conditions, so how on earth how am I to help my husband if I can’t find much info on the condition?
Also, because this condition is never mentioned in the press, people think you’re mad whenever you mention it or they want you to explain it in more detail, which in itself is a nightmare to explain.

I personally think there should be more press about all mental health conditions, because I think the more we hear about these different conditions the more we can recognise them and help people with any of them.

   

It was recently Time To Talk Day, but how many of you knew this? I only knew because I follow @timetochange on twitter. I watch the news and even sometimes watch breakfast TV and I didn’t see anything about the Time To Talk Day.

I also feel the press only talk about older carers (50+) or carers that are children. I personally think no child should ever have to be a carer and I have a lot of respect for those that are, but what about the carers that are say 40+ and are caring for someone in that age range? There never seems to be any press or awareness of these carers or the people they care for. It can be very frustrating for me being someone in this age range and caring for someone in this age range. Also I noticed that a lot of the charities will only help either the really young carers or older carers (50+). What about the middle aged carers? We need help too!

I’m just glad that there are so many carer groups on Facebook that understand that carers come in all shapes and sizes.

 

Anyway …. Here’s a couple of mental health groups on Facebook:-

Carers Connected

Making Mental Health Positive

 

Remember Take Care Of Each Other,
Carer’s Vent

 

Technorati Tags: carers,carers connected,mental health,cluster b,mind,awareness,time to change,time to talk,carers vent,raspberrytalk,depression,dementia,alzheimer's

The Unwanted Guest … (ROB)

I’m sure many of you had unwanted guests at Christmas, some of which you are able to turn away, some that you can’t and you just wish they would go away.
Any of you that read my blog on a regular basis will know who ROB is. For those of you that are new to my blog, may I suggest that you read the 3 people I live with before reading any more of this blog entry.
My unwanted guest decided to come Christmas day, just before serving up Christmas dinner, which was just perfect timing don’t you think? ……
I was not expecting to see Rob at all and I was certainly not prepared to speak to him. Unfortunately Rob comes out to play when he feels like it and he doesn't care what else may be going on. I was not in the mood for Rob, so when he started verbally attacking me, I broke down in tears. And, as usual, even though I broke down like this I still tried to calm my husband (Rob) down. But the more I tried the more angry he got and more of Rob came out. I even lost my temper a bit at one point and shouted at my husband and I even threw a glass bottle outside (fortunately it didn’t break!). I know I shouldn’t have done this, but I was so frustrated that Rob decided to come round for a Christmas fight.
Like I have already said the more I tried to calm my husband down the more he got into a rage and used me as a verbal punch bag. That is certainly how I feel when he goes into Rob mode. Also, even though his mother and step father were here, it was still me who got the full brunt of Rob’s verbal abuse. L
I felt so frustrated afterwards for several reasons. Not being able to hold it together was the main thing, but also that I didn’t even notice he was coming out to play. I was also frustrated that there is nothing I can do for my husband when he gets like this. I’m sure other carers out there that care for someone with mental health issues feel this way too.
Don’t know what the answer is, but I do know both me and my husband need some help with managing this side of him. Will we get the help we need this year?

Technorati Tags: Mental Health,mind,carers,christmas,personality disorder,rage control,carers connected,mental health video,cluster B

The madness that is Christmas ...

So, it’s only so many weeks until this thing called Christmas which always seems to create such madness every year.
As most of you know, my husband has trouble going out of the house at the best of times just to do some shopping with me. So we try and do shopping at quiet times to reduce the stress to him and myself. I actually hate food shopping anyway and just find it so much more stressful when I have a disabled person with me - I have to be so alert and try to stay calm …… nightmare.

So this year rather than leaving our Christmas food shop until a week before, we have bought things over the last few months.
“But that's not so easy to do with meat” I hear you say. Well this year we have ordered our meat from our local butcher. All fresh from local farms and we’ll be picking it up on 23rd. And it’s all better quality and slightly cheaper than the supermarkets!
Most of the vegetables will be frozen. Yes, I know fresh is better, but frozen veg is a lot less hassle …...
Our kitchen is tiny, so there’s normally only enough room for one person (me!). Last year there was two of us prepping the food and 2 others constantly coming in and out and it was a complete nightmare. So that's the other reason to have frozen vegetables – no prep, chuck it in a pan of water!

What about naughty bits?

Again, as soon as this stuff was in the shops we bought what we wanted. I have to say though that, despite what the papers keep reporting, the supermarkets seem to get the Christmas things in later and later each year, not earlier. We also had to go to several different supermarkets to get everything. Maybe I should shop online next Christmas?

Now for some general advice:

• If possible make sure you rest when you can, Christmas is a very hectic time.I’m lucky this year as we will be having my mother in-law and her partner staying with us. So no matter what there will always be someone with @raspberrytalk.
• Make sure all meds have been collected and there’s plenty to cover over Christmas and New Year.
• Get the Flu Jab.
  (If your registered as a carer at your G.P you should of been offered this for FREE.)
• Get as much of your Christmas food before December. This can include all the naughty food as well.
• Try not to get stressed out, it’s only Christmas!(easier said than done I know).
• Ask for help if you’re not coping to well.There is always someone who can help you’d be surprised by the kindness of people especially this time of year.
• Keep warm.You may be entitled to get a warm home discount.

Have fun, it’s Christmas.

Merry Christmas everyone & remember take care of each other.
carer’s vent & Aka the raspberry

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Making of a Mental Health Video

For a long time I have been wanting to do more for spreading awareness of mental health.

I have been retweeting stuff on twitter, but I felt this was not enough. So my idea to do a video came to me one night while wide awake in bed. The original idea was just to have captions to music, but after discussing it with @raspberrytalk we both agreed that actually talking about mental health would be better.

I was going to do the talking on the video, but I then thought it would be more impactful if we had both sides - mine as the carer and @raspberrytalk as the caree.

We neither of us dreamed this would take us on such an emotional journey - some feelings that had been buried come up to the surface while doing the video. But most of all, doing this video reminded us of what a good team we really are.
During the editing process it almost felt like old times when we used edit wedding videos together. Just a pity we don't have a decent camera any more :(

 

WE NEED TO TALK MORE ABOUT MENTAL HEALTH AND STOP THE STIGMA
 

@mindchairty
@stampstigma
@timetochange
@recoverycastle
@carersuk

Special thanks to
 our Family
Carers Connected
@raspberrytalk 

Importance of Supportive people

 

Those of you that are regular readers of my blog know that a that i wrote about the importance of support http://carersvent.blogspot.co.uk/2012/12/the-importance-of-support.html

In this blog entry I am going to be talking about the need to have only supportive people  in your life when you are a carer. My husbands family have been so supportive and i know if i need to talk I can go to them. there are also a lot of carers groups on Facebook, the people on these groups are so supportive and they never judge me either. I am thankful that these groups are out there and i am thankful to my husbands family, don’t know where I would be without all of you.

  

I recently spoke to a member of my family and they said i make everything about me. to cut a very long story short this person has not actively kept in touch with me over the years. Also when i have told them about what i am going through they have replied with sorry to hear that but we all have our problems………..you would think they would ask if there is anything they can help me with or just let me know i have their support. this has not been the case and when i spoke to them earlier this week i ended up telling them to F off out of my life if they think i am selfish.

I know some of you will say “but they’re family”, but as someone who is a carer I need to surround myself with supportive people and not negative people. I don’t have the energy to deal with negative people or people that are just not supportive.

 

Special Thanks to

@raspberrytalk

@recoverycastle

@carersconnected

@carersuk

All my husbands family

BATTLE Caree VS Carer

I was in two minds to write this blog entry and that is probably why i have waited so long to write it………..anyway here goes………….
I am sure a lot of other carers will be able to relate to what I am going to write about. I love my husband very much and he loves me very much, but since I have become his carer there has been a battle going on between us.
My husband can be very stubborn and so can I. Also my husband is still coming to terms with the fact that he is ill/disabled and needs a carer. So because of this most days he will not listen to me. I seem to know his limits more than him and i seem to know when he’s doing to much. It doesn't take much for my husbands body to get worn out, he will do something as simple as to try and make a cup of coffee and he will be tired. But despite the fact he knows all this and I'm always telling him, he will still try and do things he just can no longer do. It’s even worse when we go out anywhere. He will refuse to use his wheelchair and he will also sometimes get frustrated when i tell him not to do something because I know the affect it will have on him…
Some days I do feel like I'm constantly telling my husband no. I almost feel like a mother telling her child to stop being naughty! This is not how i want mine and my husbands relationship to be like, I want to care for him but i hate what sometimes seems like a constant battle between Carer vs Caree.
A few weeks ago i was really struggling with my caring role because i felt like i was forever having a battle with the person i love so much. I even thought about not being my husbands carer any more because of the battling, I felt it was affecting our personal relationship which being a carer for a loved one can do.
So what stopped me? I think it was mainly the support of other carers on Carers Connected. Just letting how I felt out and then being told it was normal and just knowing the support is there for me (even if only emotional support) from people that understand how I feel.
I did eventually speak to my husband about how i was feeling and he admitted he is a handful…the battle is still going on, some days worse than others and I think there is no real solution to this, but we’re both aware of it and trying …..

One of the lovely ladies who runs the page Carers Connected also runs Recovery Castle  was founded in 2012 by individuals affected from a range of mental health difficulties. It aims to encourage and empower those affected by mental health difficulties through peer support, both online and through local community workshops.
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