living loss

This is a guest post by Becky Cricther about grief before death Becky is 35-years-old and mummy to Chloe, aged four, who she lives with in Birmingham. A devoted daughter herself, Becky finds herself grieving her father who, whilst still alive, is suffering encephalitis. This devastating virus attacks the brain. For Becky, the father she loves is still here but the man she knew has already gone. I asked Becky to write this post because I've come to understand that the pain of grief is not only caused by bereavement. It's possible to feel it from the loss of a personality and not just a person. I’d like to thank Becky for her bravery in addressing this complicated issue of grief before death. Until Friday 13^th July last year my dad was an independent, reliable and active 72-year-old man living alone in Northamptonshire. He often visited our house baring gifts for me and my daughter, Chloe. We visited him lots too. We’d take trips to the seaside, visit farms, go to the theatre and we always had lots of plans for future activities too. We spoke every single day and we’d share banter over text messages about the plots of EastEnders. But sadly he never found out it was Derek sleeping with Kat. Before the storyline concluded, his brain was attacked by a condition called encephalitis.That day will be imbedded in my mind forever. That day I was at home in Birmingham and he was at home in Northampton. That day I called for an ambulance three times for my dad after speaking to him and realising that something was wrong. That day I thought he was having a stroke. That day I got to my dad’s house before the ambulance, having collected Chloe from nursery, taken her to a party and then driven the 70 minute car journey it takes me to get there.My dad hadn't been feeling well for a couple of days. I'd already made him a doctors appointment earlier that week and he'd been sent for blood tests. Now with the paramedics in his house, I was asked if he had packed a bag. “He may need to stay overnight”, they said. He hadn't, so I packed one for him while he walked himself out of his front door. Little did he or I know that he would never to walk back through his front door again.They ‘blue-lighted’ him all the way to Northampton General and Chloe and I followed as quickly as we could. I found him in A&E. He was already slipping away from me. His speech was going. One side of his body was weaker but not paralysed. Eventually we left him comfortable and settling into the stroke unit.When I returned the next day, he was worse and nobody seemed to know what was wrong. I was filled with panic. This was my dad. My hero. He couldn't leave me.The doctors were convinced it was an infection in his heart, so I franticly called the hospital where he'd had heart surgery in 2010 to find out which valves were involved, leaving very emotional and tearful messages on many an answering machine.Days went by trying different antibiotics. Nothing was working and my dad was getting worse. Then came the seizures. Holding someone you love while they are shaking, trying to tell you something with their eyes rolling is worse than any scene from a horror movie. Seven days later they gave my dad antiviral drugs and on the 24^th July they mentioned encephalitis to me for the first time.Encephalitis is a devastating virus that attacks the brain and my dad’s brain had already been under attack for seven days. A CT scan showed he'd lost 70 per cent of the left hand side of his brain. My dad as I knew him had gone.Over time he made progress. He walked one day. He just got up and walked. He had no idea where he was or where he was going but he just walked. He could no longer read nor write, he had no interest in the television nor the radio. He couldn’t articulate himself. He could talk but he couldn’t make himself make any sense.During his time in Northampton General, I travelled four, five or six times a week to see him, which was 120 mile round trip. Twice I had 'the call' to say, “We think you should come NOW!”I fought hard for him to be sent to a top rehabilitation centre, which happened in September last year. He was making good progress there, learning to shower and things, but he had no self awareness. His cognition was nonexistent. He needed to be reminded to drink and eat.Unfortunately he suffered further seizures in November, which have left him severely impaired and he needs others to attend to his every need. He is noncompliant in taking medication, his mobility is poor and frustratingly he knows what he wants to say but just can't get the words out. He has just been moved to another rehabilitation unit, which again I have fought for. I am hoping this will help him.Now he is closer to us it is easier to for me to visit him and I will establish a routine of visiting him four times a week. But I’m also conscious that I need keep some kind a social life for Chloe and I need to work!I’ve felt varying emotions over the last eight months.I’ve felt anger. How different would he be if they had treated him sooner? Would he have made a good enough recovery to have lived with us with help of carers? Would he have been able to go home?I’ve felt guilt. Guilt for thinking that if he would just go in his sleep it would be better for him. That I could then grieve for someone who had died rather than for someone who is still alive.I’ve felt sadness. Sadness for the fact that Chloe has been robbed of her Pops. Someone who treated her like a princess. She was the apple of his eye and was a major male role model in her life.But most of all I just want my dad back the way he was. I used to call his house number just to hear his voice and his sense of humour on the answer phone, "Leave a message and if I like you I will call you back". Sadly he never has.I have had help from the Encephalitis Society and I’ve helped them too. I raised £1,300 for them doing a skydive with a friend, something I had always said I would never do!Do people understand my sense of grief for a father who is still alive? I'm not sure. I’ve had the most amazing support from a large number of his friends. They have been loyal and kind and they’ve visited my dad regularly. People who I thought would had 'stepped up', however, haven't. I guess some people haven't coped very well with it all.Me? I’ve had no choice.