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.

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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.

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

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

 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

Slide3

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

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

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

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

Slide-7

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

Slide 8

 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

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

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 24th 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

Slide-11

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

Slide 12

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

Slide-13

How to order…

Slide 14 / Slide 15 – Project Intro / Project Slide

Slide-14

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.

Slide-15

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

Slide-16

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

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 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.