International Man’s Day

For the sake of balance, yesterday I wrote about he role that my mother played in my life, so I want to write about my father today. Growing up in the 1970’s, fathers were less of a hands on parent back then as Dad was mostly at work when we were small, so we saw him mainly at weekends and during holidays. We always ate our meals together, around the kitchen table, when we would each discuss our days. My Dad was always very keen for us to succeed at school, so he took a  big interest in what we were studying and, like Mum, encouraged us to work hard enough to go to University. I can remember him testing our mental arithmetic over meals or engaging in French conversations! Both my sister and I wanted to make him proud of us.

My Dad always adored his garden and he was a very talented gardener, in our last family home he fitted flood lights, so that he could work in the garden in the evenings! I went through a phase in my early teens when I rejected Sunday School and I used to go to Garden Centres with Dad and while he bought plants, I would look at the fish and other pets. I wanted a garden gnome, and rather than spend money on a plastic model, he spent hours carving then varnishing a unique wooden gnome for me. Later, once we had our own house, he would love to work in our wild garden whenever they came to visit us, he was itching to get to work on our wild hedge or untamed flowerbeds, so the garden always looked better once they had come to stay! He must have been disappointed that I did not inherit his green fingers.

Dad was a willing taxi driver – he took on a number of University visits when I was studying my A Levels – and he taught me to drive when I was 17. We used to go out in his car early in the morning, before he went to work, and he was never cross when I hit several gate posts, but was endlessly patient and calm.

Dad was not very demonstrative, he did not really discuss emotions, but it was never in doubt that he loved us, he showed that through his actions. Like Mum, he was supportive throughout his life and family was very important to him. It was Dad who stepped up when his mother had a stroke, when his father and brother in law became dependent and needed carers at home and he was a frequent executor for several family members’ wills. He was methodical, thorough and had very high standards. Dad was rather a shy man and at family parties at home, he was always to be found in the kitchen washing up or being barman, rather than being the centre of attention, so he was an excellent host.

Joshua was born on Dad’s 64th birthday and he and Mum came to the hospital as soon as they heard the news that their grandson had arrived and that he was in Special Care. They both put their own lives on hold and came to us, where they were needed for their calm support.If they were disappointed that their grandson had been born with brain damage, they never once showed it to me, but instead they were endlessly interested and supportive of his progress and shared our pleasure as he attained his various milestones.

At today’s family meal to mark Joshua’s 18th birthday – the last of his celebrations during his birthday week – Dad’s quiet, solid presence will be greatly missed and we will raise a glass of thanks to him. He died when Joshua was 13, but due to his dementia, he did not really know him during the final years of his life. However, I have no doubt that were he here today, he would share our pride in all that Joshua has achieved and he would be quietly ensuring that all of our guests were being well looked after. Thank you for everything Dad xx

Hospital Etiquette

I am delighted to report that we came home from hospital last night, armed with two weeks of strong antibiotics to eliminate Joshua’s lung infection and we are to have a blood test after that, to ensure that it has gone. While on the Children’s ward, I learnt several things:

  1. It is important to be polite and grateful to those who have helped us. We were looked after really well from the start to the finish of this crisis and it has been important to recognise and thank good service. When we got home last night, I completed a satisfaction questionnaire for the Ambulance Service to praise how well they took care of us and I will find something similar for the Trust too. I thanked everyone  who assisted us in hospital – nurses,doctors, cleaners, auxiliaries etc – and I beamed with pride every time Joshua followed my lead and thanked them too, which he did quite a lot once he felt better today and it never failed to raise a smile. They are not all nice jobs, so while someone was cleaning our cubicle for us or was making his bed, I would chat, rather than sitting in silence or ignoring them.
  2. My mum taught me and my sister a good trick when we were all three staying on the dementia ward with my Dad; she would find out ,then use each nurse’s name so she always made the thanks, personal. When I was paying attention, once Joshua was out of danger and A&E, I adopted the same approach; I would read name badges or try to recall how they introduced themselves. They went to the trouble of addressing Joshua by his first name,they even asked me if he preferred Joshua or Josh, and I explained that he answered to both as we used both. I would tend to be called ‘Mum’ but the nursing staff had enough to remember ,without  trying to recall parents’ names too, even though I would always introduce myself as Emma.
  3. Time goes slowly on a hospital ward but I could see that they were busy attending to all of their patients, but I would try to be patient as I could see that they were doing their best. So if I could do something myself for Joshua’s care, to save them the trouble, then I would , after all I had little else to do as I had not taken any distractions in the ambulance. So I found my way around the ward so that I could get Joshua yogurt from the fridge, or I found the Sluice where I would take dirty bedding and towels. I gave him all of his oral medication while we were there and I even watched and learnt how to reset the pump when he bent his arm and stopped the IV drip from working properly, rather than listening to the alarm going off for an age.We had been told in the morning that we would be discharged during the day but I had asked them when to expect that so that I could ask my husband to attend to collect us and I was told ‘late afternoon’, so I asked him to come for around 4pm. At 3.45, I asked if the paperwork and take-home drugs were ready for us to be leaving, just as a nudge. I opened our door, which had been closed all afternoon for peace, to make sure that we were not forgotten. Joshua had removed his own cannula, but he needed the back of his hand cleaning up, so I asked about that too. But although I was anxious to get away and keen to get home, I tried not to nag, but waited as patiently as I could. Without me chasing again, our nurse arrived with his drugs and paperwork and she told us, once she had removed his bloodied plaster, that we were free to go.
  4. We were mostly in cubicles on our own so there were not many opportunities during this stay to chat with fellow patients or their parents but I do try to do that too. It helps to pass the time and also, having a child on a ward gives you immediately something in common to talk about. This was most valuable during our week long stay at Great Ormond Street in 2014, when I chatted with parents whose children had undergone the same brain surgery as Joshua and I am still in contact with two such mums, almost five years later! It is a bonding experience to share such a life changing event, so it is a really quick way to make friends as you support each other and inevitably compare notes.

Armed with these tactics, it makes our times in hospital bearable. People often wish that we get home again quickly and clearly that is the aim. But I find that being able to hand over responsibility for my son’s medical needs to experts, is reassuring as it means that I am no longer responsible for making big decisions about his care and I find relief in being able to step back for a few days. Once I dial 999, I am inviting in expert help and I am more than happy to follow their lead and do as I am told. In a way I become more Joshua’s mum in this situations, and less of his carer somehow and I welcome that support.