Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

Trying to see the good in the bad

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.

 

 

 

 

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January Happiness Project Update

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I’m now halfway through the first month of the Happiness Project. Up until yesterday things had been going well. I’d had two really good weeks where I felt on top of things.  I’ve stuck to three of my resolutions really well but haven’t bothered with the healthy eating. I’ve eaten less rubbish but still not enough of the good stuff. I also haven’t gone to bed early.

Yesterday Steven came home from work early and at 6.30am announced that he hadn’t organised days off for my next fellowship module. When I knew I was going to be away I gave him all the dates I needed him to be off work and at home. This was in November. I’ve asked him more than once if it was all sorted and he told me yes. The next module is in 2 weeks and he hasn’t got any annual leave left. We’d talked about this possibility and we’d decided that Steven would work an extra night one week and take the extra day off another. He’d sorted this arrangement on Friday and told me that I need to take this Thursday off work. I can’t – I have an all day clinic that cannot be rearranged with 4 days notice. I was so angry.

My options were to cancel clinic (not an option) or put Samuel into nursery and Eloise into breakfast club (total cost = £61). When I was offered the fellowship place and saw the amount that I would have to be away from home I nearly turned it down. Steven told me I had to take the place and that we would sort out the childcare issues. Yesterday I felt that it was being left to me to sort out those issues.

Childcare is an issue that constantly rears its head and I get so frustrated that I cannot sort it easily. We do not have a vast amount of family support locally and with Steven working nights I feel I get little sleep.  I resent people who tell me how tough or tiring their lives are when they work far fewer hours than me, have a partner to share the nights with and have a grandparent on tap to take the children for a night just for the hell of it. For Steven and I to get a few hours one evening to just leave the house alone requires such planning or begging for babysitting we generally don’t bother. In the last year we probably went out 4 times alone. A night without the children forget it.

So yesterday I was very miserable and spent most of it shouting. This morning Samuel woke up at 4.30am as he fell out of bed. I spent an hour dealing with a tantrum then just as he had gone back to sleep Eloise and the cat woke up, started making a noise and woke him up again. I accepted defeat at 5.45am and we all came downstairs. I’m miserable, tired and thinking why do I bloody bother. I would just like a break. One night, no children and without the logistical nightmare of organising it or begging for favours here there and everywhere.

So I’m not happy but its only been a two day blip. I’m hoping I can improve things by this afternoon.

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Circumcisions and scooters

Busy and strange day. Lots happening.

First a trip to the hospital with Samuel to see the urologist. He keeps getting recurring infections and our GP thought he might need a circumcision.  The quickest trip to the hospital I can remember – in and out of the car park in 18 minutes.

The verdict was good. Although he has a bit of a problem, it seems to be resolving itself and he felt it didn’t need surgery. If he gets another infection Samuel has to have steroid cream to help improve things but otherwise we can leave well alone.

Did my bit to spread the good karma by passing my car park ticket on.

Steven then received a letter from the police. His scooter was recovered from a disused hospital on Sunday night. Its a write off. He’s angry that the police recovered it and charged us for the pleasure. The last time his bike was stolen we had requested that we recover it. They ignored this and charged us a huge amount of money.  We formally complained and it didn’t really get us anywhere. Since last week, every single time Steven has spoken to the police he has requested that we recover it to avoid the costs. He was reassured that that would happen so he went a little mad this afternoon at the letter. £150 recovery charge then £10 per day storage fee. We estimate the bike is probably worth about £50 as it is in such a bad state.

He’s spoken to his insurance company and they have agreed to pay out for the bike and will also cover the charges from the police. I have now convinced him to let it go and move on.  I have a feeling the weekend will be spent scooter shopping. The new garage door will be fitted in two weeks time so everything seems to be moving in the right direction.

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