JOB DESCRIPTION

A while ago someone suggested that all us carer’s should write down what we do. Basically a job description, which I thought was a good idea and it’s not until you write it all down that you realize how much you actually do as a carer.
A while back I had to write down and explain everything I do for @raspberrytalk for a letter I had to write in support of him to get his DLA. It surprised me how much I actually do and how many of the things I do without realizing I do them (sounds strange I know but it’s true). For example, making sure that @raspberrytalk does not drift into a road/person when walking.
Also, while writing the letter, it made me see that I do things that I never thought I'd ever be able to do. Which also made me realize how much being a carer has changed me. It’s made me stronger and more assertive when I needed to be; I’m normally not an assertive person but, when it comes to being a carer, I am. Sometimes I read my old blog entries and think I'm reading about someone else entirely. I’m sure other carers will be able to relate.

JOB TITLE:	Carer
DESCRIPTION:	Looking after the physical and mental health and well being of @raspberrytalk.
DUTIES:	Administering First Aid when required. Administering Medication Assist with getting in and out of bed Assist with dressing and undressing Assist with personal care and hygiene Offer mental stability and point of focus when required Lift off floor after a fall or seizure Assist with walking Watch for changes in behaviour and act accordingly Maintain a safe environment   Take care of nutritional needs Provide encouragement with simple tasks General house work including making beds, tidying, washing up, laundry and cooking meals.  Assist with feeding when required Take to appointments and chaperone Collect medications Help with completing forms Managing finances

I have probably forgotten loads of things, but this is all I can think of at the moment.

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

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

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”.

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?