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.

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.

When That Very Thin Line Nearly Disappears.


Another Blog written by my Wife Claire

I know I touched briefly on the subject of the thin line between parent/child relationships and you/better half relationships becoming blurry. But really as a cared for disabled person there have been times that the thin line in both of the above relationships has all but disappeared. I know I and am sure many other cared for people come to the point of nearly losing the relationship that should be there. I know I have had let my husband and children do many things for me that I find both embarrassing and ashamed of.

Oh yes I can already hear everyone saying it cannot be that bad but please believe me when I say it is that bad and maybe worse. The feeling of being a burden never leaves you; you try everything possible before asking for help yet again. Having to waken someone through the night to help you is a horrible feeling but one you have to cross. Sometimes when I am feeling lonely I forget that along with caring for me, my better half still has the house work, the shopping, driving every where our children want to go, oops nearly forgot walking the dog, then I phone downstairs and ask for some company just when my better half has finally found five minutes to sit down at last, I feel so angry if I get a huff and hear the words please just let me have a couple of minutes then I will be up. That is when I feel a real bitch and so to try and conquer that I try not to phone down as much.

Then the thin line starts to slightly reappear, my better half comes up more often and we can sit and talk about anything, then my children come up and have hugs and we can talk for ages. That is when suddenly you can realise that there are good points to being ill. Extra time with my other half and children.
So please everyone who is being cared for like I am, take the time to say an extra thank you, so that your loved ones really do know how very much we appreciate everything they do both for us and our family.

Take care

Claire Grieve.

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.