Why ???


I am sometimes surprised at why people think I blog.

Recently I was told by a MSP “I have great Sympathy for what you do” This made me wonder if people thought that is why I blog to look for sympathy. Well to clear that up NO I DON’T.”  I have never looked for Sympathy for what I do that’s not the type of person I am  so anyone who thinks that has not been reading my blogs properly.

The whole point of this Blog is to speak up for carers and not seek sympathy for them but more Respect and Understanding. Some people don’t get it and when its an elected representative and a Member of the Scottish Government that in my humble opinion makes it worse. I am not going to Name the MSP as this is not about.

I am not seeking to stand as a candidate for Council, Holyrood or Westminster and have no plans to do so in the for see able future. I have my own political opinion and it is my own. I know that life is not Black and White Neither is it Red verses Blue there are other shades of politics and Football available. However we must also work together and so over the past few years I have spoke to people from all political parties to further the Understanding of Carers in Scotland.

So if you haven’t read this Blog before please read some and hopefully you will have a better understanding of carers and indeed the people they care for.

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Be positive


I have not posted for a while for a number of reasons none of these reasons is that I had nothing to say. Those of you who know me will know I never have nothing to say. I have however found it hard to be positive recently.

It is hard to be positive when not a lot of positive things are happening. I watch every day as Mrs G is in pain and I can do nothing about it. I say platitudes like “its going to be OK”  Its hard to keep this up for a long time when Mrs G picks up one infection after another and does not get  a break. Carers are not immune to these infections too and its hard to stay positive when you are not feeling well either. However I have to try as no matter how unwell I may feel Mrs G feels worse as she has her daily pain to deal with too and if she can’t use her distraction methods to deal with the pain its worse.

So how do you stay positive ? the simple answer is you don’t but you try.

About a Carer


This is a Post Written by my wife Mrs G

When Mr G became my Unpaid Carer, there was, he felt, quite a stigma about it, especially a man giving up a well paid job which put “his family on benefits”. It took him some time to get used to his new role.

 

I had always been a stay at home Mum, cooking up to four different dinners a night, cleaning the house, making the beds, as you will all know the list goes on and on.

 

So not only did Mr G have to do some of these tasks, the children had to get used to Daddy cooking one meal for everyone and asking them to keep their rooms tidy and make their beds themselves. As Mr G also had to help me do things I could no longer do.

 

I don’t know if he remembers the day when he felt inside he was an Unpaid Carer but I remember it vividly. It was after an “heated discussion” with one of my consultants. He managed to change the way she spoke to me and ever since then Mr G has worked hard to bring the role of an Unpaid Carer to the fore and of course he also works tirelessly helping me both physically and emotionally and tries to raise awareness for the Caree.

 

I may be wrong, but I think Mr G works so hard to help raise awareness of Unpaid Carers, as it was so hard for him when he had the role thrust upon him. Mr G just wants other Unpaid Carers to know they are not alone.

 

 

A Message to end Carers Week


This is a Message from my Wife Claire she wanted to share to end Carers Week

“You May Not Believe This But I Count Myself Lucky !

Yes I suffer massive pain, take countless medications, am a prisoner in my own home but I still count myself lucky. I look around at everything that is happening around the world and I could be in many situations that are worse than the situation I am in.

I could live in Syria and be surrounded by civil war; never knowing what is happening day-to-day.

I could be one of our many soldiers or civilian workers in Afghanistan.

I could be living in Iraq, amidst countless car bombings and suicide bombers.

I could be a homeless person anywhere around the world, never knowing when or if I would eat that day or get lucky and get a place overnight in a shelter.

But I am none of those things, I am a person who needs twenty-four hour care and am lucky that my husband gave up his job to become my full-time carer and am lucky that all my children at one point have been young carers for me, at this moment our youngest daughter is filling this post.

I never ever wanted to be this ill and requiring care but I am, and I am extremely lucky.

As Carer’s Week draws to a close, I would like to thank my husband and children but also every unpaid carer whether they are young carers or a full-time carer. We are all lucky and extremely grateful to have you and the outstanding care you give.”

My Presentation to the Carers Cross Party Group last Night in Scottish Parliament on being Prepared to Care?


Good Evening, firstly I would like to thank Heather from Princess Royal Trust for Carers For asking me along to speak today. My name is Clare Lally and I am here tonight with my partner Derek and friend Michelle.  I am full time  mum/carer to my twin daughters Holly and Katie, the Twincesses. The girls are now 6 and a half and were born 12weeks premature, as a result of the birth Katie suffered brain damage and was left unable to walk, talk and swallow – she is fed via a button in her tummy and she is also a silent aspirator which means she can choke and you can’t hear it so we have to watch her 24hours a day to prevent this! She is such a clever girl she can also use this to manipulate a situation as well.. Holly our other daughter has no health issues, she is a beautiful girl with patients of a saint however I do feel I let her down a lot. So the theme of this weeks Carer’s Week is prepared to care? Was I prepared …to care? No i wasn’t, I was preparing to be a mum for the first time.
* – I wasn’t prepared for the continuous bad news we were getting for Katie, every day/week there was always something else wrong.
* – I wasn’t prepared to bring my children into the world and then spend every day thinking is this the last day we have with her.
* – I wasn’t prepared to have to learn all the various pieces of medical equipment we have to use on a daily basis.
* – I wasn’t prepared to feel I was letting down my other daughter because so much time focuses on Katie who isn’t well.
* – I wasn’t prepared for friends and close family to Abandon us at a time we needed them the most!
* – I wasn’t prepared for other Carers to be so horrible and nasty because I was campaigning and speaking out!
* – I wasn’t prepared to have to constantly fight and battle with services for services!

These are just some of the things I was not prepared for! But, Now these are the things I am not prepared to let other Carers Go through – we have to be prepared for things and we can do this by preparing together.  If we had been told before we came home from hospital with the girls all the things we would have to go through, all the fights and battles we would have to deal with I really don’t know if we could have done it!  There is no amount of preparation could prepare you for what lies ahead.  For me the 24hour care of Katie is the easiest part of life, the hardest part is all the fights and challenges!  I was on Call Kaye phone in the other morning on BBC Good Morning Scotland, and one of the things I said was we need a huge needle and thread to start sewing up all the loopholes and nets we all fall through! Well, we are that needle and thread, we can start sewing them up because we know what they are because we are the ones who have fell through them! We have to make changes not just for us but for the Carers who will be coming behind us so they do not have to go through the same hurdles and challenges that we have all had to.
And on that note I will thank you for listening and giving me the time to speak

My presentation on “Prepared to Care” To Cross Party Group on Carers at Scottish Parliament


I realize that a number of MSPs and Carers were not able to attend the Cross Party Group on Carers Last Night in the Scottish Parliament So here is the Text of what I said in my presentation.

“Good Evening my name is Michael Grieve and I am going to speak to you about being Prepared to care.  

I have been a carer for my wife Claire for about 8 years. It is quite hard to say when I really started being a carer, as my wife’s illness has deteriorated over time.  She suffers from Chronic Pain but it was eight years ago I gave up work as a Programmer Analyst with the Edinburgh Woollen Mill to become a full-time carer. The Chronic Pain she suffers from has become more debilitating and now her loss of Mobility has reached the stage that she currently is stuck in her bed 24/7 so she is only out of bed to go to the toilet. At the moment this is a real struggle for her to achieve but she struggles and fights everyday to do things that you and I take for granted.

I was not prepared for the financial implications of me being a full-time carer having been used to a reasonable income from working full-time.

I was not prepared for having to fight for my wife to get the Benefits that she is entitled to.

I was not prepared for having to see my wife in pain and not be able to do anything about it.

I was not prepared for being called a bully when I stand up for the person I care for.

I was not prepared for the heartache our Children would go through when they see their Mother in Pain.

I was not prepared for the lack of support from friends and family. My Family don’t live near enough to give physical support but the emotional support they give helps immensely.

I was not prepared for having to fight every step of the way.

I was not prepared for how it would affect our relationship however that has not been a negative thing we are closer now than we have ever been. We laugh we joke we get through the day.

I was not prepared for the fact that I would experience that which few fathers have and   be at home and help and guide my children’s growth I am proud of all three of my children they are all doing the most with their education Our youngest Daughter is just starting 5th Year and our Eldest Daughter is in 6th Year. However it is our son who has gone to Abertay University and is a Student Nurse.  His time spent with his mum after leaving School and before going to University had an impact on him which is why he chose nursing.

I have campaigned for or against one thing or another all my life and it was I suppose inevitable that I would become a campaigner for carers.  The profile of Unpaid Carers has been increased over the past couple of years but it still has a long way to go a lot of people and yes politicians among them still don’t get the work that the Millions of unpaid carers do every day.  

There are still people out there who don’t identify themselves as carers we have to reach them and get them over the stigma that being called a carer means that you are an “unpaid skivvy” as one person described how they felt about the term to me.     

I would like to see Carers getting the respect and recognition they deserve not hidden away as a cheap solution to the cuts in health and social care.    

Without organizations like the local carers centers, The Princess Royal Trust for Carers and Carers (Scotland) I don’t know where the campaign for carers would be. I am privileged to do work with all these organizations and I have not met a group of People more committed to fight for the organizations they represent.

Organizations like the Royal College of GPs are now developing policies on carers and ensuring a greater understanding of the role of carers among GPs.

The Co-op Retail stores have adopted The Carers Trust as their charity of the year and hope to raise £5 Million pound I am proud to be one of Scotland’s Carers Ambassadors and as such go to stores and help them understand what carers do and provide a local contact for events and support.

However the fight continues there are new carers every day and I will continue to fight for them not to go through what I and many others have.  Clare Lally and I have developed and online presence in the form of a Blog and are both shocked and pleased at the great response it has received.  Posts may be in fits and burst but we hope to have “Guest Bloggers” to speak of their experiences.    

My whole outlook on life has changed since becoming a carer I believe for the better when you have to spend your time thinking of someone else and putting their needs before your own it makes you realize that some of the small things in life don’t really matter.

I believe that yes there are negative impacts on your life at the moment when you become a carer but the benefits you can get can far out weight them.

 

Thanks for listening.”

My Journey


Today we have a Guest Blogger Ailsa Tweedie

“In the last few days I’ve just come back from London after a successful meeting with the National Union of Students on a piece of research into student carers that they plan to launch later this summer that I have been a part of. However it was my journey before NUS; one that began at the mere age of eight years old that I’m going to be writing about as guest blogger.

I was never officially identified by my local authority as a young carer until I was in third year of secondary school; which meant that I was never accessing any support from a young carers project until I was thirteen years old. At this point I had already been forced to grow up far too quickly, become independent and already had part of my childhood robbed.

In all honesty upon reflection, I wish that someone had connected the dots for me sooner. It would have made growing up a lot easier than it was. At a young age I wasn’t able to articulate to my friends what was wrong with my mum and why it meant I needed to help look after her. Being a young carer also meant that I had to hear sensitive and sometimes upsetting news about my mum’s condition with no one to talk to about it, as I’m an only child.

I’m often asked by people when sharing my experiences of being a carer if I had ever been given the choice between being a young carer and a normal young person; what would I have chosen?

At the moment at the age of twenty-two, it is a question that I am yet to give an honest answer to …”