Community Hospitals Scottish Borders

I was interviewed by ITV Border regarding The review of Community Hospitals in the Scottish Borders by NHS Borders on Thursday here is the interview. The petition is here

We’ve reached a crucial point in our campaign – next Thursday,  19th February 2015 we’re going to be delivering our petition to the board of Borders NHS

Now is the time to put the pressure on and make sure we get the right outcome. There are two ways you can help:

1. Share the petition one more time so we can get a final new signatures before the hand-in:

http://you.38degrees.org.uk/petitions/nhs-dont-close-community-hospitals-in-hawick-peebles-duns-and-kelso

2. If you can make it, come along to the petition hand-in. The more of us that are there, the more impact we can have. Here’s what you need to know:

When: 19th Febuary 2015 @ 3:00pm
Where: NHS Borders
Rushbank
Newstead
Melrose
TD6 9DA
Extra info: It is not envisaged that this will last any longer than 30 minuets and  press will be invited so a big turnout would be great this petition is about People not buildings so please come along.

Some positive notes

Its been over a week since I last posted and other than some reductions in the swelling in Claire’s legs there is really no change in Claire’s physical health. She is however so much happier to be in the living room as opposed to the bedroom up the stairs. We are still no further forward in getting a “Hospital Bed”. This would make life so much easier as the bed she is using is very low.  So need to get one Not sure how to yet. The doctor has not been in touch either considering they referred Claire to the hospital I would have thought they might have wondered is she still had the symptoms which by the way she has.

I am enjoying Claire being down stairs its just a case of working out a routine sometimes takes us a while when there is a change. We are getting there though. Its great spending so much time with Claire as not only is she my wife she is my best friend and I didn’t realise how much I had missed just being able to sit and watch TV with her.  Being able to do this again has helped us both so much.

What a Week

I know I have not posted for a while as have been busy but this past week has just been worst for a while so had to post.

Just to update you. Last Tuesday Claire was still in a great deal of pain from her sinuses. I called the Doctors at O’Connell Street and a Doctor came out to see her. He was concerned that “Two Anti Biotic’s” had not cleared the Sinus Infection. He felt that the “Best option” was for Claire to go to the Borders General Hospital (BGH)  and arranged an Ambulance he felt there may be an issue with swelling on her Brain.

I helped Claire get Dressed and Come down the Stairs which was a great struggle. An ambulance came and decided to take her out in her wheelchair from the bottom of the steps at the Front Door.   It was at that point we realised that the tyres were flat on the wheelchair it was still however used and Claire was bumped down the steps at the bottom of the path in the wheelchair. They got her into the ambulance and to the BGH.

She was in A & E for Four Hours and saw 2 Doctors and had “OBS” done her Blood Pressure was low and her heart beat was high. The Doctor released her as they felt it was a Sinus infection but didn’t give her any Tablets. They have referred her to the ENT department.

 I drove her home we had a bit of struggle getting her into the car at the BGH as she was very sore by this time.  When I got her out of the Car we decided she would use her Zimmer which was the way she felt most confident to get in (it was after 6pm by this time). With a great deal of work I got her to the Steps at the bottom of the path and she made the first step she then fell I got her on her feet and she fell again. It was at that point Claire and I realised we were not going to get her in on our own and that Claire had hurt her knee and hip. I therefore dialled 999 and an Ambulance came, Claire at this point was sitting on the Steps in the cold. The Ambulance drivers talked about getting a special chair to get Claire into the house but after discovering that she had hurt her hip and knee they decided to take her back to the BGH. Claire felt she was able to get back to the Bottom of the Path and get on a Trolley bed she was very cold by then and had a number of Blankets over her but she was still on the cold surface. She managed this with help from me and the two ambulance men. They took her back to the BGH.

 She was at the BGH for Four hours again and had X Rays which showed no breaks she has a bruised hip and sprained knee. The A & E staff arranged for an Ambulance to take her home and I returned before she did. Two Ambulance Crews came and with the help of a special Electric climbing chair got her into the house and into the living room.

 She has not managed the Stairs and Monday Morning was still  sleeping sitting up in the Living Room. That was a whole 6 days after the hospital visit.

I had contacted Claire s OT (Occupational Therapist) by email on the Sunday night advising her of all this as she had been on Holiday the previous week. I telephoned her on the Monday Morning and we discussed the possibility of Claire getting a Hospital Bed for the living room. I was advised that none were available and that she could not tell me when one would be available. Scottish Borders Council are looking into Clawing Back Beds from the Community where they are no longer needed. I was advised that she may not even qualify for a bed. I therefore decided that I would bring a bed down from  upstairs.

We now have Claire in the living Room on a Single bed. We are seeing this as a positive step as she is able to be more involved in what is going on and has more room to move about. It is unfortunate that yet again it was us that had to solve the problem and that due to lack of funding at Scottish Borders Council the Social Work Department Could not help.

I know there are many stories like this out there at the moment as the Cuts in Local Authorities are hitting people like us the hardest. I am hopeful that Claire being in the living room will be a positive step and will keep you updated.

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.

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.

 

 

24 /7 – what it really Means

We live in a world where everyone wants everything and they want it now when was in my twenties you could not Buy Alcohol on a Sunday anywhere other than a pub. Shops didn’t open 24/7. If you wanted to go to a “Mall” you went to the Metro centre in Gateshead. Now we have 24/7 supermarkets in Countless malls in every major City while some of this does make our life that little easier it also kills of things from the past like the corner shop and the High Street.

Now living in the 24/7 age does everyone really understand what that means well to me it is my life being a carer I look after Claire 24/7 when she needs help during the night I am the person helps her. Much like other Carers up and down the whole of the UK and indeed throughout the World. This is the real 24/7 and this Wednesday the 24th July 2013 Co-operative  Group employees up and down the UK will be bringing this to peoples attention by doing events to raise money for the Carers Trust.

I have the pleasure of being a Carers Ambassador this year and have been visiting stores, phoning stores, supporting at events and recently spoke  to a Membership committee to show the important work that carers do.  Here is the presentation I gave –

 

Intro / Slide 1

Hi everyone.

My name is Michael Grieve and I am a Carers Trust Ambassador.  I am also a Carer for my Disabled Wife.

This year I am helping to support Co-operative staff, members and customers with fund raising for The Carers Trust which is as you know is your chosen charity of the year 2013.

The Charity of the Year Partnership will fund new projects for young adult carers aged between 14 – 25 years.

Many thanks for the opportunity to speak to you today about what I believe will be one of the most exciting things to happen for young adult carers in many years.

We at Carers Trust are privileged to be able to work with you to bring a whole range of new support services and grants to a large group of people who devote a significant part of their life to helping others and who are rarely recognised for what they do.

Slide 2

 

But what is a carer? A carer is someone of any age who provides unpaid support to family or friends who could not manage without this help due to illness, disability, mental ill-health or a substance misuse problem.

Caring is a cause on a vast scale – more than 7 million people in the UK, with the number forecast to reach 9 million by 2037 – that’s 1 in 10 of the population who is a carer

Yet, despite the huge size of the issue, it’s a cause that is still very much “hidden” or unrecognised and one that does not evoke the same emotive response you get when you talk about causes such as Alzheimer’s, child cruelty or cancer.

For any one individual, the chances are that they will be a carer at some point during their life. Caring affects us all.

Slide 3

As I said despite the fact that there are 7m carers in the UK – 1m of which are under 25, caring is still very much a hidden issue with many carers going unnoticed for the support they’re providing and the impact that it has on their lives.

At Carer’s Trust, we don’t believe that caring should be a hidden cause.

As many as 25% provide more than 20 hours of care per week and 12% provide more than 50 hours – this is a huge statistic and one that cannot go unnoticed.

Slide 4

The impact of caring on anyone is huge, but it is especially noticeable on Young Adult Carers. This year we are raising money to support 20,000 Young Adult Carers so that they are not forgotten, so that they are empowered and equipped with the skills and information they need to transform their lives.

It goes without saying that if somebody is caring for 20 hours a week; this is going to have a huge impact on their life, both mentally and physically.

We know that 68% of Young Adult Carers are bullied – not at school all the time, can’t go out with friends after school – they are easy targets

Because they are not always able to attend school; hospital visits, caring around the clock or simply because when they do go, they get left behind so choose not to go – this can have a huge effect on their education and career opportunities.

Not forgetting the physical implications of caring – if someone is lifting their dad into bed every night, helping their mum down the stairs, this is going to have an impact on their health and we see this time and time again.

What these Young Adult Carers are doing for their loved ones really is fantastic, and this shouldn’t be ignored, but all of these things can lead to social exclusion and isolation which put Young Adult Carers at a huge disadvantage, at Carers Trust  we work to ensure that Young Adult Carers are not ignored or forgotten, that they receive the support they need to live their own lives.

Slide 5

I would now like to read you a blog extract written by a young adult carer on the Carers Trust website…

Blog extract – I care for my Mum, and I don’t class myself as a carer, more of a shoulder, and a helper, because Mums capable of a lot of things. She doesn’t have a full disability; it’s more of a memory thing. Her accident years ago, before I was born, affected her memory and now she has trouble remembering things, or noticing things, or takes a lot of time to register how to do things, and I’m coped pretty well my entire life, but now that I’m 17, and had trouble with school and now college, it’s getting quite hard to deal with it all.

I love my Mum and she’s like my best friend, but she constantly feels like she fails at everything and I’m just not strong enough anymore to say otherwise, because I do feel like I’ve lost out on having a Mum who is all there, and it’s hard not to want to admit that, especially when there’s nothing she can do to help that. Most days, things are okay, and we both cope with it, but today, again, like a lot of days lately, I just felt like I couldn’t cope, and needed to let it out.

Does anyone have any advice on the kind of things I can do, to stop the depression and anger and stress getting to me? I do card making at times, I wonder if doing that more and say selling them on to people would be a good idea, I’m open to ideas, and any support and help would be great. I don’t want to feel alone anymore…

Slide 6

Carers Trust is comprised of its Network Partners – Carers centres and Crossroad schemes. We cover the UK and reach 38,000 adult carers each year, 27,000 YAC.

Carers centres; provide info, advice and support. Community consultations and practical help, befriending schemes, breaks away and social and training activities and schemes

Crossroads; provide care in the home, so that carers can take a break. Carer support workers go into the home and provide overnight support, assistance with meals, household duties, personal care etc. whatever the normal carer normally does they will do.

Slide 7

What will  Carers Trust  being the cooperative’s charity of the year mean for young adult carers?

Slide 8

 

Working together, we would like to raise at least £5 million nationally. During the course of 2013, this will involve more than 4000 store and branch visits to more than 110,000 staff.

So far to date we have raised over £1.6Million – meaning we are well on track to reaching our target!

Slide 9

There is a regional calendar of events available for the North region. These include things like sky dives, fun runs, sponsored walks, half-marathons and mountain climbs.

If you are interested in doing an individual or team challenge or would like to organise your own fundraising event or challenge please contact your regional fundraiser, Terrie Oakshott.

Slide 10

Upcoming events in the North region include…

1. The ‘Round the Region Relay’ is a sponsored walk or cycle which we are still looking for teams to take part in. This will involve walking a sponsored section of the North regional boarder and will involve teams from all business divisions. This is a membership led event which has been organised by Kevin McGrother and your membership team will be able to give you more information about this exciting event.

1. Launch of 24/7 – So How You Can Get Involved On Wednesday 24^th July 2013 colleagues across The whole Co-operative Group are being asked to take part in our exciting, UK wide Charity of the Year fundraising day. 24/7 is about more than just fundraising; it aims to highlight the 24 hour, seven day a week nature of caring that carers face every day. We’re aiming to raise at least £247,000 on this one day alone, and every section of business is invited to take part. Please ask your stores to get in touch and let me know what they are up to. They can also tweet photos to @carerstweets and email them to toakshott@carers.org

Ideas – Why not do a time themed event to link into 24/7? Or do a 24 hour challenge? Get staff to cycle 247 miles on an exercise bike in store…shave 24 heads in one day…sit in a bath of beans for 247 minutes…The possibilities are endless! Anything that incorporates the numbers 24 / 7!

Slide 11

If you would like to get involved with supporting carers Trust this year please do let us know.

Slide 12

How we can support the co-operative with fundraising this year.  Your regional fundraiser is Terrie Oakshott  (contact details on slide) and there is a team of charity ambassadors across the region from many local carers’ centres who may be able to provide support at a more local level.  There is also dual branded charity merchandise available for any branch or staff to order. Merchandise is free and available via a telephone hotline or this order form…

Slide 13

How to order…

Slide 14 / Slide 15 – Project Intro / Project Slide

Fundraising will support a variety of key projects under the “About time” umbrella. The Charity of the Year partnership strongly supports Co-operative’s commitment to Inspiring Young People, a key part of its ethical plan, and is expected to reach and transform the lives of 20,000 young adult carers.

There are 5 core strands to “about time” starting with the “Time to be noticed” campaign, designed to improve national awareness of young adult carers, what they do and the issues they face. “Time out” will provide respite breaks to give young adult carers the breathing space to focus on themselves and their ambitions. “Time for Change” will set up 50 major new projects across the UK, offering tailored support and services in areas such as education, training, careers and health. ”Time to connect” will provide a new on-line support website where young adult carers can seek advice and connect with others in a similar situation. Finally, “Time to be heard” is a programme of events designed to  give young adult carers the opportunity to engage with opinion formers and policy makers so that they can develop the skills and confidence to make their voices heard.

Slide 16 – Thank You

Thank you for your time today – please feel free to ask me any questions you may have

You can do this by leaving a comment

Mr G’s Salon

My wife Claire has started her own Blog at Speaking up for those that have unpaid Carers but when I read her latest post I  managed to get her to let me post on here as I find it quite amusing and hope you will too.

My husband has learnt to do so many new things since my illness began, he is now, of course perfected the art of laundry, got fed up of my love of washing dishes, so we acquired a dishwasher. The art of folding and hanging his laundry to such a perfect degree, that my second love, ironing, is hardly ever required.

Mr G’s cooking in all reality beats mine hands down so damn much. His soup making, stews, roasts, bread making and to top it off his bloody jam making skills, make me so damn jealous.

His hunting down bargains while shopping also beat mine I am ashamed to admit. Unless he shops with our eldest daughter, his weekly shopping means I can actually save money!!

Now he has yet again excelled at another new talent, Mr G to my utter and total amazement, not only cut my hair, he managed to thin it quite a bit also.

Although he has amassed all the above new talents, his biggest and best new talent his being an unpaid carer. He finds this a shock that he is able to care for me. I however never ever doubted he could do this, as I have always trusted in him and please believe me that I have total respect in every unpaid carer.

Take care.

Mrs G.

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 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 5^th Year and our Eldest Daughter is in 6^th 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.”

Do you enjoy your Job ?

I do that may surprise you but I enjoy being the person that cares for my wife. I get to spend time with my wife time that I would not have if I was doing what I used to do. every job I have had I have worked hard and worked long hours. Before I became a carer I was a Programmer Analyst which in may ways was the job I really wanted to do for a long time.

So do you enjoy the job you do ? how many of you dread getting up ? how many of you have the odd Sickie ? Well as a carer you can’t do any of these things. I am my wife’s main carer. That is my “Job”  and the Government pays me £55.55 a week. That works out at £7.94 a day or given the fact that carers provide 24/7 care  £0.33 an hour. I have long past the stage where money was all that mattered to me. Family matters to me my wife and my children are what matters to me. I am a Husband a Father and a Carer. I would want no other Job as I am the best person to care for my wife. There is sometimes a thin line as Claire puts it between carer and husband where she feels it is sometimes blurred. I understand why she feels that but I don’t feel that. I married Claire for Better or Worse for Richer or Poorer and In Sickness and Health. Would I wish she was well “Damn Right I would” I would give anything for her to be well.

So I enjoy what I do because I care for the woman I love. The Scottish Government and the Conservatives have it wrong offering paid for respite breaks as far as I am concerned I don’t want to be away from my Soul Mate.

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 …”

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.

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.

Young Carers

There is a group of carers who don’t have a very strong voice in the UK they are the young carers perhaps because they are busy caring in-between their School work and trying to have a life.  My Wife and I have 3 Children who have all played their part in the care of Claire. They sit with her and talk which may seem like nothing to some people but to some one who is stuck in the house it is a lot. Just doing the small things that Claire cant do like make a coffee or make a sandwich. Our children have had there life restricted as we have not been on Holiday as a family since Claire has got ill. We do hope to go a Holiday soon. The Young Carers Service funded by local authorities and the NHS is one of the most important services they provide for Carers as far as I am concerned they take young carers out and provide them with someone out of there family and friends to speak to about the extra pressures they have in life.  The young carers Service in The Scottish Borders was put out to Tender by Scottish Borders Council. This resulted in The Local Carer Centre loosing the service all for a couple of hundred pound. There was no legal obligation to put the service out to tender.  As this service is for Kids very few people spoke out. Its difficult to say if the service is better or not without looking at the figures as too how many young carers are helped now and before.  As I feel words are powerful here is me standing up for Young Carers at The Scottish Labour Party Conference in 2012

Being a Carer

Many of you may know me or know off me you may have read my other Blog where I have blogged on caring before. Well this blog will only be on Caring and Clare Lally and I felt that we needed to try to Speak to as wide an audience as possible. For myself I felt that yes I am involved in a number of organisations and am quite well know in certain areas but that’s not all I am. I am first and foremost a Carer for my wife Claire. She along with our Children Andrew, Esther and Fiona are my night and my day. We suffer together I feel her pain each day as if it was my own. I get frustrated when the doctor wont come to see her on her worst days and wants her to go to the surgery. I try to make her laugh everyday with my “Humour” those of you who know me well will know why I have put quotation marks round that. We laugh we cry we get to spend our time together. I feel ashamed when she is in a lot of pain and I have to get on with stuff round the house or when I know she is in a lot of pain even thou she tries to hide it. I still know as not only can I see it but our dog can too and wont go into the Bedroom. Don’t think i am  complaining about being Claire s Carer I would not want any other person to look after her. I have said it before I don’t want respite because this is what I love doing.       

         

A Tale From The Other Side

I felt it was appropriate to hear from the person I care for first. So this is my Wife Claire.

Hi, I am Claire and am pleased to be able to talk to you about being someone who is Cared for. My husband, Michael, is my Carer, this has it’s good points and bad points. The best good point is that I get to spend so much more time with him, the pain I go through is worth that. However, there are still some things I feel ashamed and embarrassed talking to him about and having him know about them. The line is so thin, I know I feel sometimes if Michael was not my Carer, I would not tell him of some problems I have. I want to try and keep my dignity and still be his wife. I feel on a regular basis that I am a burden not just to Michael but to my children also. If Michael wants to go out to some meeting at night he always checks that someone can Mummy sit. I was in tears yesterday because of something my daughter had to help me with.

I know on many occasions, especially after three nights in a row of having to waken Michael to help me, that he and the children should be able to have a break, I keep telling him that he should put me into respite care for a short while but he will not do it. His answer every time is the same, he loves me and he does not want to even think about it. Funnily enough the reason I want him to think about it, is the same, I love him and hate having to put too much on his shoulders.

If you are in the same situation as ours, the only bit of advice I could tell you, is to make sure you keep talking as husband and wife; otherwise that thin line I spoke about earlier becomes very, very blurred. Hopefully I will be allowed to keep contributing to this blog and will be able to talk to you again about being the person who is Cared for.

Bye for now and Take Care

Claire Grieve.

New Blog Launched

This Blog will be Launched soon