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 

Answers

Next week should hopefully be not so busy, at the moment only a doctors appointment for me next week. @raspberrytalk is seeing neuro-psychiatrist tomorrow lets hope he helps, 2-3 years on and we still have no proper answers except that my husband has:

Cluster B PERSONALITY DISORDER .

Antisocial personality disorder: characterised by an ignorance of the entitlements of others, the absence of empathy, and (generally) a pattern of consistent criminal activity.

Borderline personality disorder: extreme ‘black and white’ thinking and long term unstable emotions – particularly when involving relationships, identity and behaviour. These feeling can lead to both self-harm and impulsive behaviour.

Histrionic personality disorder: attention seeking behaviour that often includes inappropriate seductive conduct and superficial or inflated emotions.

Narcissistic personality disorder: characterised by the consistent need for praise and admiration and a belief that they are special and ‘entitled’. Extreme jealously, arrogance and a lack of empathy are also usually present.

knowing my husband has cluster B explains his mental health but what about his physical health which has declined more and more over the last few years. it is so frustrating for both myself and @raspberrytalk also the so called medical professional's seem to look over his physical health and put it all down to his mental health or they just say its in your head. They are missing the fact that my husband is in pain everyday, can't walk most days and also some days he can't get out of bed because he's so fatigued. I could go on but I won't because I would be here all day. we just want answers. is it so hard for these so called medical professionals to help or even do test that have not been done.........

21st October 2014

so my husband saw a neuro-psychiatrist on 19th September 2014, who only focused his attention on my husbands seizures and kept saying you need to keep a diary of them and write how you felt and how you thought other people around you felt...................I tried telling the so-called specialist that there is no pattern to my husbands seizures. He totally ignored anything I was saying, anything @raspberrytalk said as well. I feel so frustrated for myself and @raspberrytalk............still no real help or answers.

next week @raspberrytalk has yet another appointment to see a  psychiatrist, we chased this up with the doctors to find out why and apparently the neurologist we saw a while back said my husband is very depressed really I wonder why..............

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.
Carers Vent Twitter
Raspberrytalk Twitter
Carers Vent Facebook

Almost lost it!

Almost lost it big time at the doctors today, the stupid reception lady told my husband to walk up a flight of stairs. When my husband said to her I don't think I can manage the stairs she giggled and said just take your time...WTF

doesn't end there my husband is stubborn so tried doing the stairs, I couldn't leave him to get help so I started getting very angry and verbal. eventually someone ca...me along and asked if we where o.k and I said no.

The lady said why didn't you tell the receptionist you can't do the stairs both me and my husband replied and said we did. i said the trouble is they never notice the stick that husband has to use.

Cut this long story short my husband ended up collapsing on the stairs....

The doctor was amazing, she even took us out the back when it came to us leaving.

 

After this happening today I am wondering how many people don't see my husbands stick or the fact he struggles with every step he takes.

Brave Raspberrytalk

Good morning all @raspberrytalk wrote the following message on @facebook last night. I wanted to share it with you all because I am so proud of @raspberrytalk for writing this, it must of taken all the courage he can gather to write it. Oh and before you all ask he has given me his permission to share this. Lets all be more open about our mental health.

To my friends and family, just so you all know and I can stand up and say it ... deep breath ....

I have mental health problems!

As well as my physical and neurological health issues, I have Cluster B Personality Disorder (look it up!) with rage control issues, Panic Disorder, Social Anxiety Disorder, Agoraphobia and good old fashioned Depression (no, that doesn't mean "being a bit sad or down" and yes, I do consider killing myself on a fairly regular basis). ...
My seizures are apparently Conversion Disorder (which is part of Functional Neurological Disorder), which according to my psychiatrist means they're all in my head, but according to my psychologist they're physical/neurological! Those of you that have had the pleasure of witnessing them can make your own minds up about that bit

Am I ashamed? Yeah, a bit. Actually quite a lot!
Do I think people, including friends and family, look at me differently? Yeah, a bit. Or I could just be paranoid .... yeah, add that to the list! lol

But more than anything else? ..... I am just so totally and utterly fucking terrified all the time about what the hell is happening to me and what is going to happen next, what am I going to do to my friends and family and how the hell is my beautiful wife supposed to deal with it all

Am I upset, shaking and almost in tears while I write this...? What do you think?
(well, the shaking bit is a given since I generally do this most of the time anyway! )


I've actually just spent the last 10 minutes staring at the screen trying to decide whether or not to press "Share"

huffingtonpost.ca mental-illness

#TimetoTalk.

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).   







 

My Health Part 2

Some of you may remember me writing a blog entry about my own health. For those of you that didn’t, you can view it here http://carersvent.blogspot.co.uk/2013/06/my-health.html.
I wrote that back in June last year and since then a lot has happened.

I think I will start with my mental health. Well I finally got referred for some counselling, but unfortunately the only kind of counselling available on NHS is CBT. But I thought I would give it a go anyway …. and you know what? It has actually helped!
I have become a bit calmer as a carer and I have also worked through some of the guilt I had bottled up. So in this instance CBT has helped, but the only trouble with it is that it only deals with the hear and now and not the past.
So what about my physical health? Well I personally don’t think that has changed much. It’s no worse or better, but I do now at least have some answers.
For the past few years I have been having problems with my legs. To cut a long story short, I saw a neurologist back in January this year and he has given me a diagnose of Fibromyalgia. Yep, the dreaded F word! Those of you that read my blog and have followed my blog will know that my husband @raspberrytalk suffers with this condition as well.

So is this just a strange coincidence or is there more to this condition? This is something I will talk about more in another post.  

Also, I have been given a diagnose of a condition called syncope, which is basically another word for fainting spells (well that's how I understand it).
So, I have some answers to what was and still is going on with my health. Meanwhile I am still having to care for my husband full time. One of the things my CBT lady wants me to do is to have more me time, which I have done, but I have only been able to do this when family were visiting. Yes, having time for myself is important, but it is hard to do when you are the prime carer for someone with not only physical health conditions but also mental health problems.
Since last June I have had loads of blood tests. If I remember right some of my markers were slightly high, so the docs wanted to check them a month later. When they rechecked them they were then showing up normal, so that was the end of that.

 

 

The neurologist put me on vitamin D and he also requested I have some more blood tests! Hopefully these will give the doctors and me some more answers.
I also have a had a psychiatric assessment because I was having hallucinations. The psychiatrist basically said there’s no real help they can give me because they no longer do counselling …. what a waste of time that was …. never mind.
But it did give me opportunity to talk about things, however briefly, and I did get prescribe something to help me sleep. I now no longer take SERTALINE but instead I am now taking MIRTAZAPINE at night to help me sleep … seems to helping so far.