We’ve had lots happen to us over the last 6 weeks which has been hard both at home and at work. It’s led to less sleep, more calories consumed and a huge deal of worry and tears. I’m feeling now we’ve made it out the other side and the 1st April signifies many changes for us as a family as I start a new job.
6 weeks ago my father in law had a severe sub arachnoid haemorrhage. He collapsed suddenly in cardiac arrest and after initially being treated for a cardiac problem, it was found that he had had a severe bleed. He was a very healthy active person who still played regular sport. This came completely out of the blue and there had been no warning signs at all.
13 years ago, for my intensive care placement at university, I spent 12 weeks on a neuro intensive care unit. It was a hard placement, probably the most emotional I’d had and I found it really difficult to cope with. I still remember many of the patients on there very vividly as their stories stay in my mind. With illness and death I often find it easier to ‘justify’ it in my head, for example ‘at least they’re not in any pain anymore.’ It’s just my mechanism for coping. For the first time on my placement I found I could not justify anything that happened. Brain injuries appeared to occur to people who were young, active, healthy and were suddenly struck by a severe and unexpected illness. It lead me to form the opinion that brain injuries are the worst thing going – they attack suddenly, undiscriminantly and catastrophically. I honestly have more hope about a diagnosis of cancer than I do a brain injury.
So late one night I found myself sitting with my husband in the waiting room of an intensive care unit breaking the news to his 14 year old brother that their Dad was seriously ill. It was painfully obvious at that initial stage that he required maximum intensive care support and whatever the outcome of the situation it was not going to be good. Steven bravely asked early on would his Dad be better off dead – I had to concede that I felt he would. The next day the consultant asked to speak to the whole family and we were told that he was highly unlikely to survive. If by some chance he did, he would be severely brain damaged and did we want to continue with treatment. Bizarrely the conversation was relatively easy, everyone in the room felt he would not want to survive with brain damage and everyone agreed that they should let him go.
We were approached about organ donation. I’ve always been strongly in favour of organ donation. Part of it comes from that neuro intensive care placement – taking the good of organ donation from a traumatic brain injury was another coping mechanism helping to justify the situation in my head. Samuel’s heart defect further strengthened this belief as a donated heart valve will be better for him in the future rather than a mechanical one (it also motivated me into returning to regular blood donations). Family discussions were again relatively easy – we all agreed and everyone was in favour of going ahead. I went with Steven’s step mum to go through the discussions and consent for the procedure. It was a very intense afternoon – about three hours of discussion with two very lovely ladies from the transplant team. During the discussion we found out that my father in law had been on the organ donor register since 2000 and the wishes that he indicated then were followed. I’d always been a little sceptical about whether the organ donor register actually had any impact and I’ve learnt that yes it does! We learnt that ’tissue’ donation encompasses many things including bone, skin and crucially heart valves. I’d always declined tissue in the past as I feel a little squeamish about skin donation. That afternoons discussion motivated me to come home and change my entry on the donation register – they can take the lot!
We had a letter a couple of weeks ago letting us know that his kidney and liver were successfully donated and that other organs had been used for medical research. I hope the recipients are recovering well and putting their new organs to good use by living a full and happy life.
And then on to the next stage….my father in law was not the first in the family to die from a sub arachnoid haemorrhage and this has now had an impact on surviving family members. Steven has a neurosurgery appointment in a months time to explore the possibility of screening. Its not something I’m comfortable with. I swing from ‘let’s get this sorted’ to ‘I don’t think I want to know if something is wrong’. The potential impact of this on our lives scares me and my worrying and anxiety are going overboard. I’ve had several ‘helpful’ conversations with people about not worrying and as always it is easier said than done. The children have also been unsettled with everything that has happened and this has created many awkward conversations about death and dying along with the direct painful question from Samuel – ‘do people with poorly hearts die?’ I lied. Bad mother. Now is not the time to be having that conversation with him. One day we will, but not now.
We’ve had a very hard few weeks. Things at home and at work have been stressful – very stressful. I’ve got a new job which has bought a combination of happiness and anxiety. We’ve also had a close family death which was a shock and very sad and has also had potential health implications for other family members. Worry and anxiety seem to be my main enemies at the moment.
I’m caught again in a mad crazy time of too much work and too many other commitments. February is shaping up to be a horrendous month that I am mentally willing to pass quickly. I dream of sleeping through it (but still meeting all of those commitments and obligations!) I have some very tight deadlines on a work project as well as two essays to complete for my masters that are due in next week. To add to the fun I found out last week that my job is at risk of redundancy as part of a reorganisation at work. Whilst I’m confident of having a job at the end of the process I’m finding it all a bit unnerving. The actual change in job isn’t worrying me (I’m looking forward to a challenge), I’m more worried about the prospect of having to return to full time hours and the impact on us as a family.
On Thursday I lost the plot. It all got to me and something finally snapped. Last weekend I’d been criticised by someone and been given a list of everything that she felt I ‘should’ be doing. Its very different from both my ‘should’ list and my ‘must’ list. It came back to the same problem of me being deemed the most responsible person in the family so organising all other family members falls to me. Eventually I handed all of this over to Steven. He is just as capable as me and whilst he prefers to sit back and let me sort it all I simply cannot any more.
Yesterday I woke up in a surprisingly good mood and decided to make the most of it. Rather than killing myself with stress I’ve decided to take a step back and calm down. I will tackle this mad month in a relaxed calm way and will look after myself in the process. We went to an indoor play area in the morning – the kids got to run around whilst I made the most of the free wifi, caught up on a couple of jobs and enjoyed a cup of coffee. In the afternoon the kids had a choice of what do to and they asked to make a carrot cake. We had a great time but got into trouble as we were singing too loudly and woke Steven up.
Rather than panicking, over multitasking and actually achieving nothing, I’ve got more done in short focused bursts and have now completed everything on my list for the weekend. I’m off to the cinema later (Les Mis – again!) to end the weekend feeling like I have done something worthwhile for myself.
I think I’m getting the hang of this personal resilience business.
Since then we have been lucky. Three years have passed and Samuels health in general has been good. He does need a valve replacement but at present we’re watching and waiting for that time. His heart function isn’t perfect but he copes well with it. Winter and colds present problems but during the summer months he appears completely normal. His heart doesn’t seem to hold him back and he has grown into a very happy and bright little man. My worries about CHD always looming and dominating our lives have gradually faded.
It took me some time to get used to the idea of Samuels CHD and learning to cope with the uncertainty of the future and also the idea of facing major heart surgery. I had a huge amount of anger over his delayed diagnosis. I had felt dismissed and made to feel at fault over his condition. As a nurse I was horrified at myself that I failed to notice my own child was in severe heart failure. I also know that had he arrested at home his chances of survival would have been almost non existent. Samuel’s development is normal and we are fortunate that he appears to have no long term effects of the heart failure and arrest. I found that there was a lack of information on CHD. Despite being the most common birth defect there is such little awareness. I knew nothing of CHD myself. A trip to my local library revealed three shelves dedicated to books on ADHD but not a single book on CHD existed in the entire county. The early days were very lonely with a struggle to get support close to home. Online forums have helped my sanity many times. A positive aspect of CHD is being part of a caring online heart community.
In 2012 in the UK the Children’s Heart Federation launched the ‘Think Heart’ campaign [http://www.chfed.org.uk/home/campaigns/thinkheart/]. This is a simple tool aimed at both parents and professionals to raise awareness of the symptoms of an undiagnosed heart defect. Information, leaflet and posters are being distributed to midwives, health visitors and doctors to help bring attention to the commonest birth defect. Parents are also spreading the word at parent groups, amongst friends and giving out leaflets and posters where possible. I’m very supportive of Think Heart and also the pulse oximetry campaign. I believe both would have made a huge difference to Samuel. He may have been diagnosed earlier preventing an arrest and that uncertain hospital transfer. I may have had the courage to have seek a second opinion earlier rather than question myself and my mental health We would have been saved much trauma and anguish. I’ve learnt since that in the UK there has been a huge emphasis on post natal depression for health visitors. I believe that this was at the detriment to my son – his physical illness was interpreted as my mental health problem. Both pulse ox and Think Heart are really simple concepts that increase awareness of CHD to both professionals and parents. For a very small cost outlay lives can be saved, long term disabilities may be prevented and parents can be saved trauma. In the UK pulse ox is being examined with a strong possibility that it will become a standard part of the newborn examination this year. The professionals are doing their part, as parents it is up to us promote, share and shout about Think Heart and place it higher on everyone’s agenda.
I’m struggling with people not taking responsibility themselves and the impact that it then has in turn on me.
I’ve often fallen into the trap of being too nice, too dependable and as a result people put upon me and I end up with far too much to do. Over the last year I’ve become more assertive and learnt to tell others to sort their own issues out. Don’t get me wrong, I’ve not turned nasty, I’m just realistic. An example came this week. A colleague emailed me with ‘can you find out the code for xxxx incontinence pad’. As I opened up google it hit me – if I’m capable of searching on google why doesn’t she do it. I stopped and replied with a polite please look for yourself. Maybe I need to add let me google that for you to my email signature.
I’m now caught though in a balancing act – at what point do I help to benefit myself. One of our childcare providers currently isn’t registered with my childcare voucher provider. We first discussed this in July and she said she would register with them. I backed this up in September with the details of the voucher company and still now she hasn’t registered. Our last conversation about it a few weeks ago was along the lines of ‘I don’t understand what to do’. We’d had the same conversation before. I’d explained, as a parent, I do not know what she has to do but I had given her the phone number of the company. If she phoned them I’m sure they would explain it. Now, at a time when a new bill is due she still hasn’t registered.
The frustrating problem is that we are well catered with childcare vouchers. I can easily pay using this. Spare cash instead is not so easy to find at present. I feel strongly that as a person running a business she should be taking responsibility and registering for something she promised months ago. Why should that expectation fall on me as her customer. We’ve now reached the stage where we have decided not to use her for childcare unless the voucher situation is resolved.
The change in childcare arrangements hasn’t been easy. Steven is coping on 5 hours sleep and we’ve just eaten our tea at 10pm. Not ideal and I don’t feel it’s a long term solution to do this each week. I have huge resentment that we are having to do this simply because someone cannot register on a website. There aren’t alternative arrangements that we can use other than working it out between ourselves.
So, am I cutting off my nose to spite my face? Do I carry on scraping together cash that I don’t have when I have a very healthy voucher account which has too much money in it? Do I take responsibility for someone’s business when they are a grown adult and just as capable of making a phone call as me?