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

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

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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MENTAL?

Mental Health is something most of us avoid talking about, especially when it’s the mental health of someone dear to us. In my case it is my husband (@raspberrytalk).
I love my husband very much and he loves me very much as well. But with that said neither of us can control his mental health and sometimes I want to just pack my bags and go. Out of all the problems my husband has, I find the mental health side of things the most difficult to deal with.
Ever since I have known my husband he has always had a aggressive side to him, which over the years I have tried to deal with and I always thought it was my fault. But I found out from talking to my husband that he has always had this side to him. He has even admitted that whenever he and his first wife argued this more aggressive side of him would come out. He even believes that this may be the main reason his first wife left.
The following are extracts of a psychological assessment conducted by Dr Pamela McGeoch, clinical psychologist, 3rd march 2013

“…he continues to exhibit a rage problem with cluster b personality disturbances and exhibited intimidation towards his wife and the interviewer...”

“…the patient was found to be too emotionally unstable, physically unwell due to chronic pain, and too aggressive to conduct a thorough in depth psychological assessment …”

“…a report also states that the patient stated that his first wife left because she was afraid of what he may do to her when in a rage…”

“…he showed some concern for the effects of his physical condition and his aggression on his wife and some awareness of his inability to contain this. He reported that ‘when ROB comes out, my wife ends up lying screaming on the floor. I have no control over it, I can’t stop it from happening, I can’t even apologize.’…”
“…The patient and his wife together reported that he has not physically assaulted her at any time. However the interviewer was concerned for her physical safety, particularly if she tried to leave the patient and for the current emotional intimidation and likely verbal abuse she is experiencing…”
“…The patient was found not to be suitable for psychotherapy due to the level of his instability and violence. Identifying appropriate treatment resources including anger management in a suitable facility for the level of expressed violence is recommended as there is significant current risk of violence…”
“…anything further that can be done to relieve the patients physical condition such as referrals to spin or nerve damage specialist is recommended…” 

As you can see they talk more about aggression and they even give it a name. In some respects it was somewhat a relief that how he was getting was a mental health problem and something he has no control over. It also confirmed to me that it was not anything I was doing or making him do. Also because he had been diagnosed with a mental health condition, we both thought this would mean that he would get some real help and also that I would be given some help and assistance in knowing how to handle his mental health. Strangely enough this assessment was carried out a year ago yesterday and nothing has happened! No help for me or my husband with managing his mental health.
The doctors at our new GP’s are aware of my husband’s mental health problems, yet they have not offered any help or even made any referrals for us to get the help we both need. My husband recently asked our GP if there was any news about the referral to the specialist neuro-psychiatrist that Dr Broeker, Consultant Psychiatrist, had recommended back in May last year. Our GP told him that he knew nothing about it (not true, we’d seen the letter at a previous appointment) and that it was my husband’s responsibility to chase up the psychiatrist. We had to write to the psychiatrist to ask him to write to our GP to request a referral again. Surely not something patients with mental health problems should be being made to do!?
As you will see from his care plan/report, the psychiatrist was also concerned about my health and how I was managing with being the prime carer for my husband.

“The patients wife has increasing difficulty to cope with the demands on her and the patient feels that he is a burden to his wife.”

“his wife is very supportive and his wife will be offered a carers assessment as she appears to struggle increasingly with looking after the patient.”

Well I have had 2 carers assessments since last May and nothing has changed. At my first assessment I was given out of date leaflets and at the second one I was told to try and have some time to myself ….. REALLY!? They have not got a clue …….
With that said, I did get the details of Action For Family Carers who have helped me and my husband as much as they can. They even got me referred to CBT which has surprisingly helped me.
But we still have not be offered any real help with my husband’s mental health, or for me with help dealing with his out bursts, etc. At both carers assessments I was asked if I felt I was in immediate danger. I always say no to this question because, yes my husband can have outbursts of violence but, he has never physically tried to harm me. But his mental health problems are effecting my own mental health wellbeing, which is something that needs to be changed because I have got to a point where I have given up!
I really don’t have the strength any more to deal with his outbursts, which I know sounds harsh but, I am mentally exhausted and really don’t know what I should do ….

So Why Stay?
Whenever I ask myself this question the answer is simple; my husband is one of the most caring people I know. I fell in love with this guy who was and still is the most sweet natured person you could meet. I love him warts and all as they say.
Also the way I look at mental health problems is that they are just like any other health issue - it is just something which has happened to that person.
Like I have already said my husband is a caring, loving person and is amazing because, despite what he’s going through, he is always only worried about how all this is effecting me and what he can do to make things easier for me. I think this is one of the reasons he wants me to publish this blog entry; after all he always encouraged me to start this blog as a place for me to “vent out”.

Benefit scrounger…………….Yeah Right

As promised, I am going to have a big rant about the Media and MP's calling anyone who does not work a scrounger. Me and #raspberrytalk used to run a photography business called Campbell Photographic

Running your own business is a lot of work because you have to do a lot of admin as well as the actual job. Also there’s meetings with potential clients, marketing, etc … the list goes on. So me and #raspberrytalk are not what some people call “work shy”, we are both far from it. Before we ran our own business I worked as a sales assistant and #raspberrytalk was a Senior Store Designer for Sainsbury's. Both my job and #raspberrytalk’s could mean long hours and sometimes for #raspberrytalk it meant days, even weeks, away from home.
My husband was someone who could run a business meeting of contractors, architects, etc, or someone who could organise and keep happy 300+ people at a wedding for group photos, etc. When we ran our photography business we would both have to interact with people we only met once or would not meet until the day of a photoshoot. My husband was a very confident, strong willed man. These days #raspberrytalk suffers massive panic attacks at the thought of going out to the supermarket to do food shopping, or hides trembling in the kitchen if someone comes to the front door. Sometimes he has really bad aggressive outbursts when he will scream and shout at people or himself, but then he’ll try to stop and control himself by self harming. He will scratching himself until he bleeds or hit himself in the face/on the head and punch or head butt walls in a panic.
Physically, a good day for him is a day where he can have a shower and wash his hair (with my help of course) without collapsing from exhaustion. A bad day will mean staying in bed crying because of the constant pain, unable to think clearly or speak properly and drifting in and out of sleep because of the fatigue (but never feeling rested or refreshed). He has not got the physical energy needed to do a job and because of his mental health problems there is no way he would be able to interact with people safely. For those of you that don’t know what problems my husband has, go to the WELCOME PAGE. Now ask yourself, could you work if you had just one of those problems let alone all of them? Choosing to be my husband’s CARER was a natural but by no means a easy one. It meant I could no longer work because my husband needs continual care and supervision. This meant money would be tight assuming the DWP recognised the fact that my husband is ill and needs a carer. Those of you that regularly read my blog will know that we have had to battle to get the benefits we are on currently. We had to fight to get his DLA. It took over a year for the decision to be overturned at tribunal, which meant during that time I was not allowed to apply for CARERS ALLOWANCE.
During that time #raspberrytalks conditions had also gotten at lot worse, which meant by the time he was awarded middle rate care he could barely walk! So we then had to reapply to get his mobility award … which is another story!  My husband is also receiving ESA which, after 6 months on assessment rate, he was sent for a Work Capability Assessment with ATOS. You can read about his horrific ordeal here – #raspberrytalks WCA horror story.
I'm sure a lot of you have heard a lot about ATOS and their assessments and trust me, the bad stuff you’ve heard is true. Me and #raspberytalk know first hand what these guys are really like. After going through what could only be called torture, mentally and physically, for both myself and #raspberrytalk he got granted his ESA under regulation 35.2. Certain claimants to be treated as having limited capability for work-related activity.
35.—(1) A claimant is to be treated as having limited capability for work-related activity if—
(a)the claimant is terminally ill;
(b)the claimant is—
(i)receiving treatment by way of intravenous, intraperitoneal or intrathecal chemotherapy; or
(ii)recovering from that treatment and the Secretary of State is satisfied that the claimant should be treated as having limited capability for work-related activity; or
(c)in the case of a woman, she is pregnant and there is a serious risk of damage to her health or to the health of her unborn child if she does not refrain from work-related activity.
(2) A claimant who does not have limited capability for work-related activity as determined in accordance with regulation 34(1) is to be treated as having limited capability for work-related activity if—
(a)the claimant suffers from some specific disease or bodily or mental disablement; and
(b)by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work-related activity.
For now both me and #raspberrytalk are getting benefits. I’m currently getting Carer’s Allowance, but this is only because he won his appeal for DLA (which is going to have to renewed later this year). We get joint ESA, which we had to renew before Christmas and we are still waiting to hear back ………….
Sounds like a lot but it’s not. I get Carer’s Allowance, £59.75, but as this is classed as income (35hrs+ per week for £59?? Well below minimum wage Mr Cameron!) our ESA is reduced by the same amount, which does make me wonder why I even claim carer’s allowance. But any money is better than none, especially with all the changes to other benefits such as housing benefit, etc. We do get an extra Carers Premium of £30 because of #raspberrytalk’s level of disability, but it’s still not a lot.
Even being on these benefits we struggle to pay bills. When we go food shopping we always look in the reduced section, we look for the best deals and when we do eat we always reuse any leftovers for another meal. Nearly all of our clothes are bought from charity shops. We don’t go out every other week for a meal or buy ourselves nice things. We did go out for my 40th birthday, but that was a treat and we saved for the whole year for it. Despite what the media would have you believe we don’t go away on loads of expensive holidays - we haven’t had a proper holiday since 2005, except for a reduced, last minute weekend at Warner because the car service cost less than we had allowed for and a couple of visits to #raspberrytalks dad in Scotland.
So anyway, I am now having to be a full time carer, which is a lot harder to do than a normal 9-5 job or run a business. As a carer you get paid less than minimum wage and in some cases you never get time off. We live in constant anxiety and stress because we never know what each day, hour or even minute is going to be like because of my husband conditions. We live in constant fear of the dreaded “brown envelopes” arriving or debt collectors banging on our door because of the money we owe. Also when you do eventually get offered some help, it is usually very little, not really suitable and usually too late.

So what’s the real point of this rant? I just wish the media would stop focusing on the people that are clearly not in the same situation as me and raspberrytalk or the majority of real people out there that are in need. I really wish that certain MPs and TV shows would stop calling anyone on benefits scroungers, work shy, malingerers, etc.
I don’t want to get political but the MPs are really making things worse by shouting their mouths off about something they really know nothing about.
I hate the fact that we have to live on benefits and will probably be on them for the rest of my life. #raspberrytalk hates the fact that he can no longer provide for me and himself. He is also frustrated that he can’t do any of things he did before he became ill or that he has to rely on someone else to look after him.
I really wish just one of those MP’s could step into my shoes for even just one week or month.
Special thanks go to:
Raspberrytalk’s family for their continued love and support.
@action4carers
@carersuk

@carewelluk
@carersweek

@helensbeadbox
@robinwickens 
@pritipatel (yes she’s an MP, but she has helped me and @raspberrytalk with the DWP).   







 

HELP

I personally think when someone becomes a carer there should be some kind of help offered to you automatically. But it's not and it can be difficult to know what help is out there and most of all where to find it.

I have been my husbands carer for nearly 3yrs now. Our doctor knew I was my husbands carer but at no point did she tell me about any help that is out there for me. I don't know if it was lack of her knowledge of such help or if she just couldn't be bothered.

It was back in May that I was given a leaflet for

 I had briefly looked at their website before but was not sure if they would or could help me. I ended up emailing them and I got a response very quickly, they even told me who would be assigned my case. Within a few days she contacted me and within a few weeks she came to see. Well since meeting her she has helped me and #raspberrytalk with so much and
has helped us get in touch with other organisations and got both me and #raspberrytalk assessments done.

She referred me for some CBT and I had my 1st session this month. She has also helped with so many other things and most of all she's given me support.

Somewhere on the internet I found out about a mentoring programe/scheme for new carers (but can't remember where). It's done through an organisation called timebank.
Anyway, I signed up for it and my mentor is very good, full of advice and her husband has fibromyilgia. So she has an understanding of what I'm going through and what #raspberrytalk is going through too.

I have also been in touch with Carers UK,


who I signed up with at the beginning of the year. There is a lot of support on there too.  If you sign up with them you can use the forums on there, which is mainly other carers and it's amazing how supportive they all are.

I was even part of carers week 2013 and shared my story.
I only found out about them because of using the internet and I'm sure there are other carers that are not lucky enough to have the internet. So how are we carers meant to know about help that is out there?

Something needs to be done about this. So many carers struggle without the help they truly need. I myself have struggled without help or support. This is not good because it can and has effected my own well being.

But what can be done?