Life and Death

There are all kinds of bereavement therapies available , but I have never heard of Baking Therapy. As a way to relax and distract my mind from over-thinking, I find baking to be very helpful. I create something that is, hopefully, delicious out of raw ingredients and I have to focus fully on the recipes, so it is fully absorbing. Yesterday, I was given some cheese at work as it was leftover from a project. I left work early , potentially for a nap, but instead first of all I made some cheese straws then drove them back to my colleagues in the office, while they were still warm. That was almost as relaxing, and more rewarding, than my planned siesta, as it made my colleagues happy.

It will be my Parent Coffee Morning this morning at school, so I was busy last night preparing brownies and cake for them to enjoy. I have not seen the school Mums for ages, as we did not have a coffee morning in May, as half term got in the way, so it will be good to see them again as April seems forever ago . The last fortnight seems to have been a full lifetime, I just had to double check my calendar then, as I did not believe that Mum could have died just 2 weeks ago today. I am hoping for some hugs and support at the coffee morning, but mainly some distractions, to be able to think about other people and their issues for a change, so that funeral matters can fade into the background for once. It was important for me that I did not cancel the planned event, or delegate it to someone else, as this is something that I enjoy and carrying on indicates that I am still able to function, even though I will not be, nor do I have to be, the life and soul of the morning.

Today, parents who’s children will be joining our school in September have been invited to school for a look around, to meet their teachers and to meet some other parents too. They are having their own event this morning, but I am hoping to meet them too , so that we can make them feel welcome and recruit them to our coffee mornings in the Autumn term. They will be feeling all kinds of emotions today I would have thought, ranging from excitement and relief to get their child at a specialist school, to anxiety and fear about their vulnerable child coming to a new environment. These families are at the start of their journey with our school, whereas we are on the countdown from September, it will be Joshua’s final Autumn term and the start of another emotional roller coaster.

But I am putting that aside for now, my brain and nerves can only handle one change at a time. At the moment I am living just one day at a time, so today is all about the Parent Coffee Morning and about surviving the two week anniversary of Mum’s death.

Hospital Survival Guide

Over Joshua’s lifetime, we have had several visits to hospitals, starting with his stay on Special Care for the first 11 days on his life, several visits to A&E, his week long admissions on various Children wards for the Ketogenic diet and video EEGs and of course his brain surgery at Great Ormond Street. I have stayed with him on every one of those hospital stays and so I have picked up some survival tips along the way, which I would like to share:

  • Try to be a patient patient as you are not the only one there. You can see how busy the nurses and doctors are, so you need to be assertive but tolerant too. I hover around trying to capture someone’e attention, with¬† a smile, rather than abusing the ‘help buzzer’ unless absolutely necessary
  • Try to humanise the experience through conversation and showing an interest in the staff who are taking care of you and your son. Try to learn, remember and use the names of nurses and doctors – I learned that tip from Mum when in hospital with my dying father. While they are attending to your care, chat with them; even though they may only be looking after you for 12 hours before a shift change, they can be a useful ally and it makes the experience more pleasant for everyone.
  • Write everything down : you usually only get one opportunity to see a doctor/consultant in the day ,on their morning rounds. If I have not got notes on things that have occurred to me during the course of the day and night before and questions that I want to ask, then I inevitably forget. It is helpful to keep notes for yourself of things that are hard to remember, such as difficult drug names, the names of conditions that are raised or even doctor’s names too.
  • It helps if you are the type of person who can sleep anywhere and through anything, which luckily I am. I have always been given a camp bed or foldaway bed, never having to slum it in an armchair as some parents do I know. But I also grab naps when Joshua has slept, during the day as you never know what is around the corner.Time is an odd things when you are in hospital too, I have usually found that the days are busy and that the time has gone¬† pretty quickly. You are in your own little bubble while in hospital and the outside world takes a back seat.
  • As the carer of the patient, you need to have a stash of food and drink as , while the patient will have regular meals, there is no provision for parents/carers. When I have been there alone with Joshua, I have had to ask a nurse to watch over him while I have nipped to the canteen or vending machine. Children’s wards are better equipped with snacks than adult wards, and some nurses have been happy to provide toast for us to share for breakfast. But it is not long before you become bored with sandwiches and it is a real treat when you are allowed outside for ‘real food’!
  • When the Doctor says that you can go home, do not, as I did on the first occasion, rush around packing up your belongings and sit on the bed in your coat. There are time consuming processes that have to be gone through, such as discharge paperwork and organising any take-home drugs, that seem to be able to take all day. So now I do not get too excited at the going home news, but I only begin to pack up once I have the paperwork and drugs in my hand. Before we leave, I try to seek out the staff who have taken care of us during our stay, to thank them, as it is both polite and you never know when you might encounter them again. Joshua has certainly seen many of the same faces on return visits and so it is helpful if you were not the dreaded patient and fussy mother from your previous stay!

I have found that those basic tips, help to make any hospital stay go more smoothly. Nobody likes hospitals and the goal is often to get released as soon as possible, but these guidelines might prove useful for anyone who is facing a hospital stay for the first time.