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.

Carers and Stress and Depression


We are told that the CEO s of the Big Banks get paid the big money as they have to make the big decisions. We we know from experience that they didn’t always get them right.

This isn’t a rant about the bankers it’s about the tough decisions we as carers make every day.  The stress of looking after someone 24/7 figures show that Carers are twice as likely to suffer from Depression. I myself suffer from Clinical  Depression I have to take Anti Depressants and still have days when I am very down. I find these days are more likely to happen when I feel I am getting nowhere particularly in relation to  Claire s health and battling the powers that be to get help, where is am labelled a bully for speaking up for my wife or indeed on days where I know that Claire’s pain is bad and I feel powerless to help. This is when I must fight the most I must not turn to the “Dark Side” but it is hard the Anti Depressants help with the chemical in balance but the mood trigger can still be there which is like being kicked in the teeth emotionally.

Now I know I am not the only carer going through this but these are the times you need friends and help from Carers organisations the most. You have to know when you need help there is no stigma to Depression and Stress. I try to do what I can for the See Me charity which campaigns against the stigma of Mental Health. It only amounts to getting posters and leaflets for the Schools and GP Surgeries but if that points at least one person in the right direction of help then I have done something.  Remember there are people to help.

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 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.”

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.

My Life as an Unpaid Carer when all I want to be is just a mum..


Let me begin by introducing myself and my family.  I am Clare Lally, and I live in West Dunbartonshire with my partner Derek and our beautiful twin daughters Holly and Katie (the Twincesses).

The Twincesses are now 6 and like all families our kids are our life. We would do anything for our children and that’s exactly what I am going to be blogging about.

You see one of our girls has a life-threatening condition (bulbar palsy) and requires 24-hour care. She also has quadriplegic cerebral palsy and is unable to walk, talk and her life-threatening condition means she is unable to swallow and protect her airway and she is a silent aspirator which means she is always at risk of choking – hence the 24-hour care! She does have other things like severe gastro reflux, duplex kidney system and a lower field vision impairment. This does not stop her determination and fighting spirit to achieve things in her life. She is our inspiration and hopefully over this blog she will be yours as well.

The Twincesses were born 12 weeks premature, weighing just over 2lb each, and from day 1 it was apparent that Katie had complex health needs. As Holly was thriving and gaining weight, oor wee Katie wasn’t.We spent nearly four months in hospital and a lot of medical training for us to pass nasal-gastric tubes and suction machine training (the suction machine clears anything from Katie’s mouth to lessen the risk of it going back down her airway).

It has been a long road that we have been on with a lot of obstacles and brick walls in our path. I know what you are thinking, these obstacles must be about Katie’s health and needs, right? Wrong! It’s the constant fight and battle that we have to go through to try and provide our daughters with some kind of quality of life.

Because of this constant battle I am now a very active and successful campaigner and advocate. I campaign for the rights of unpaid Carers who are doing all types of Caring Roles.  And thats what I am, thats how I see myself ‘a Role’ not a mum.  What I didn’t mention at the start was that I can’t have children, myself and Derek went through IVF and it was our second attempt that was succesful and the feeling that day when we had our first scan and we could see the nurses looking and whispering at each other we thought Oh no there is something wrong!  But we certainly were not expecting to hear the words “Your having Twins”  I just wish I could have bottled that feeling and every now again when things are really bad we could open the bottle and let some out!

We wouldn’t change our lives although there at are times when i look at the Twincesses and I think that even all I do for them is not enough, I feel that sometimes its like being a robot programmed to do certain things at certain times like making up feeds, administering medicines, doing physio, practicing Makaton – Some days I just want to be a Mum!  But, what exactly is that ‘Role’?  Maybe we are just to hard on ourselves..

But,  I am hopefully going to bring some reality that some of you will or can relate to! Maybe some have never had to experience any of the issues that parents and carers have to? Who ever you are reading this, I just hope you enjoy coming along with us on our journey as much as we will enjoy sharing it.