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 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.

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

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.

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.