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.

What I have learned from being a carer ….


We are all learning every day and as a carer you are always learning as your life adapts day-to-day.

You have to adapt to changes in the NHS, Changes to the health of the person you care for and changes to legislation in benefits and Social Care.

If you’re not used to it you have to learn to be a cook. I really enjoy cooking meals from scratch and we have all benefited from fresh food rather than the Iceland and Farmfoods frozen food. Apart from the health benefits you enjoying food more and getting Claire to eat more and have a healthy and varied diet. I enjoy both the fact that I have created a meal and the fact that other people are enjoying it. I have developed a bit of a keen eye for cooking and find it quite relaxing other than the cleaning up afterwords. I Might post even some of my own recipes at some point.

You have to learn patience now those of you who know me will know I have a long way to go to master this art. I have never been a very patient person but over the years it has improved. I find meditation has improved my patience I am far from reaching Nirvana but I do believe the Zen state exists.

Along with patience you have to learn how to be assertive without being aggressive something else I have still to master completely. There is a fine line between aggression and assertiveness. That’s the part I still have to learn.

I have always been political and Joining the political party at 15 helped me develop into who I am now the encouragement of older people who were not relatives inspired me no end. I Would hate to be a carer and not able to speak up not only for myself but for the person I care for. Fortunately this is something that is not something I have a problem with.

So carers are always having to learn, having to remain calm and not be seen as aggressive. Ah I have a long way to go and the road may be long with many a winding turn but who knows where oops no sorry that he aint heavy he’s my brother. I will keep you posted on my development and please feel free to comment with yours.

Carers and Stress and Depression


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

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

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

A Message to end Carers Week


This is a Message from my Wife Claire she wanted to share to end Carers Week

“You May Not Believe This But I Count Myself Lucky !

Yes I suffer massive pain, take countless medications, am a prisoner in my own home but I still count myself lucky. I look around at everything that is happening around the world and I could be in many situations that are worse than the situation I am in.

I could live in Syria and be surrounded by civil war; never knowing what is happening day-to-day.

I could be one of our many soldiers or civilian workers in Afghanistan.

I could be living in Iraq, amidst countless car bombings and suicide bombers.

I could be a homeless person anywhere around the world, never knowing when or if I would eat that day or get lucky and get a place overnight in a shelter.

But I am none of those things, I am a person who needs twenty-four hour care and am lucky that my husband gave up his job to become my full-time carer and am lucky that all my children at one point have been young carers for me, at this moment our youngest daughter is filling this post.

I never ever wanted to be this ill and requiring care but I am, and I am extremely lucky.

As Carer’s Week draws to a close, I would like to thank my husband and children but also every unpaid carer whether they are young carers or a full-time carer. We are all lucky and extremely grateful to have you and the outstanding care you give.”

My presentation on “Prepared to Care” To Cross Party Group on Carers at Scottish Parliament


I realize that a number of MSPs and Carers were not able to attend the Cross Party Group on Carers Last Night in the Scottish Parliament So here is the Text of what I said in my presentation.

“Good Evening my name is Michael Grieve and I am going to speak to you about being Prepared to care.  

I have been a carer for my wife Claire for about 8 years. It is quite hard to say when I really started being a carer, as my wife’s illness has deteriorated over time.  She suffers from Chronic Pain but it was eight years ago I gave up work as a Programmer Analyst with the Edinburgh Woollen Mill to become a full-time carer. The Chronic Pain she suffers from has become more debilitating and now her loss of Mobility has reached the stage that she currently is stuck in her bed 24/7 so she is only out of bed to go to the toilet. At the moment this is a real struggle for her to achieve but she struggles and fights everyday to do things that you and I take for granted.

I was not prepared for the financial implications of me being a full-time carer having been used to a reasonable income from working full-time.

I was not prepared for having to fight for my wife to get the Benefits that she is entitled to.

I was not prepared for having to see my wife in pain and not be able to do anything about it.

I was not prepared for being called a bully when I stand up for the person I care for.

I was not prepared for the heartache our Children would go through when they see their Mother in Pain.

I was not prepared for the lack of support from friends and family. My Family don’t live near enough to give physical support but the emotional support they give helps immensely.

I was not prepared for having to fight every step of the way.

I was not prepared for how it would affect our relationship however that has not been a negative thing we are closer now than we have ever been. We laugh we joke we get through the day.

I was not prepared for the fact that I would experience that which few fathers have and   be at home and help and guide my children’s growth I am proud of all three of my children they are all doing the most with their education Our youngest Daughter is just starting 5th Year and our Eldest Daughter is in 6th Year. However it is our son who has gone to Abertay University and is a Student Nurse.  His time spent with his mum after leaving School and before going to University had an impact on him which is why he chose nursing.

I have campaigned for or against one thing or another all my life and it was I suppose inevitable that I would become a campaigner for carers.  The profile of Unpaid Carers has been increased over the past couple of years but it still has a long way to go a lot of people and yes politicians among them still don’t get the work that the Millions of unpaid carers do every day.  

There are still people out there who don’t identify themselves as carers we have to reach them and get them over the stigma that being called a carer means that you are an “unpaid skivvy” as one person described how they felt about the term to me.     

I would like to see Carers getting the respect and recognition they deserve not hidden away as a cheap solution to the cuts in health and social care.    

Without organizations like the local carers centers, The Princess Royal Trust for Carers and Carers (Scotland) I don’t know where the campaign for carers would be. I am privileged to do work with all these organizations and I have not met a group of People more committed to fight for the organizations they represent.

Organizations like the Royal College of GPs are now developing policies on carers and ensuring a greater understanding of the role of carers among GPs.

The Co-op Retail stores have adopted The Carers Trust as their charity of the year and hope to raise £5 Million pound I am proud to be one of Scotland’s Carers Ambassadors and as such go to stores and help them understand what carers do and provide a local contact for events and support.

However the fight continues there are new carers every day and I will continue to fight for them not to go through what I and many others have.  Clare Lally and I have developed and online presence in the form of a Blog and are both shocked and pleased at the great response it has received.  Posts may be in fits and burst but we hope to have “Guest Bloggers” to speak of their experiences.    

My whole outlook on life has changed since becoming a carer I believe for the better when you have to spend your time thinking of someone else and putting their needs before your own it makes you realize that some of the small things in life don’t really matter.

I believe that yes there are negative impacts on your life at the moment when you become a carer but the benefits you can get can far out weight them.

 

Thanks for listening.”

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.