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.

What I have learned from being a carer ….


We are all learning every day and as a carer you are always learning as your life adapts day-to-day.

You have to adapt to changes in the NHS, Changes to the health of the person you care for and changes to legislation in benefits and Social Care.

If you’re not used to it you have to learn to be a cook. I really enjoy cooking meals from scratch and we have all benefited from fresh food rather than the Iceland and Farmfoods frozen food. Apart from the health benefits you enjoying food more and getting Claire to eat more and have a healthy and varied diet. I enjoy both the fact that I have created a meal and the fact that other people are enjoying it. I have developed a bit of a keen eye for cooking and find it quite relaxing other than the cleaning up afterwords. I Might post even some of my own recipes at some point.

You have to learn patience now those of you who know me will know I have a long way to go to master this art. I have never been a very patient person but over the years it has improved. I find meditation has improved my patience I am far from reaching Nirvana but I do believe the Zen state exists.

Along with patience you have to learn how to be assertive without being aggressive something else I have still to master completely. There is a fine line between aggression and assertiveness. That’s the part I still have to learn.

I have always been political and Joining the political party at 15 helped me develop into who I am now the encouragement of older people who were not relatives inspired me no end. I Would hate to be a carer and not able to speak up not only for myself but for the person I care for. Fortunately this is something that is not something I have a problem with.

So carers are always having to learn, having to remain calm and not be seen as aggressive. Ah I have a long way to go and the road may be long with many a winding turn but who knows where oops no sorry that he aint heavy he’s my brother. I will keep you posted on my development and please feel free to comment with yours.

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.”

The Use of Distraction Therapy


My Wife Claire is disabled and suffers from chronic pain. She is also an on-line gamer. She asked me to be  totally honest and tell you the truth, she only started on-line gaming, so she could have at least half a conversation with our son who was a lot younger when they both found World of War-craft. As they both got older and she sadly collected a few more illnesses, she realised that the pain was never as bad when she played. So she kept playing, even when our son stopped playing for a while she kept on playing.

She loves to role play she is am able to run, jump, hop, even just walk when she plays, things she can no longer do in real life. Well she can walk but not very far a few steps at most and not unaided. Then she got a referral to the pain clinic. She takes a lot of pain killers and  other types of medicines. The referral was to see if she could reduce any of these meds. It was decided she couldn’t, in fact they even added a new one. Then she mentioned the on-line gaming and how much she felt it helped her and finally this Doctor understood, were countless others had dismissed her as a mad middle-aged woman (except me of course). Now someone actually listened and even had a name for it, she said she was using WoW as a Distraction Therapy. She explained about all the different kinds other people used but was extremely pleased that Claire had found one already and had been using it for years.

Sadly there are some days she cannot go on WoW, right is one of them but she will play when she can and will soon be back, to run, jump, skip and hop. Her name may say Claire Grieve but there should also be a few other names beside it, I cannot list them all, so I will add the one name she am most proud of. Triell Proudstrider, Valorknight of the Vanguard of Valor.She has been given the honor of being an officer and would do anything She could do to help anyone of the members both in the game and in real life. They are such a big part of her but when they read this post a lot will be shocked to know she is disabled. She has asked me to apologise for her keeping it quiet, she wanted to be accepted for being her not as “oh yeah that disabled woman”, not that any of them would do that.

I will go into more detail about Distraction Therapy in another post and how else it can be used. I hope you can use it as a Carer or to help the person you care for to reduce their Pain.

How I keep sane


There is a short story called the Loneliness of the Long Distance Runner. Perhaps there should be a story about the Loneliness of the Unpaid Carer.

If you are not careful being a carer can isolate you from the outside world. I care for my wife Claire who due to chronic debilitating pain is stuck in her bed we live in a 2 story house and don’t have a stair-lift  She is in the bedroom all the time unless there is a need for her to come down the stairs for an appointment. So when she manages to sleep which can be during the day

You have to cancel things at the last-minute so friends tend to stop inviting you. However I have found a way to keep sane and active and have what I hope is a positive effect on both my own local community and the wider community of my fellow carers and indeed the public in general.

I didn’t set out to do what I did it just sort of happened. I joined Facebook and got involved in Carers Campaigns. and the rest is History as they say.

Having to fight for yourself and the person you care for on a daily basis is great help when you campaign on a local and a National Level. Being able to fight for other people give me an outlet to fight and gain the successes at a higher level when you don’t always get them for yourself.

If I can help one person cope with being a carer or seek help when they need it and felt it would be a weakness then that is what I want to achieve.

I want to raise awareness not only of carers as a whole but of the people they care for.