Hi everyone
This is extremely difficult to write as with every word I type a tear drops on the screen. I feel as if my heart is broken in two. Unfortunately my mum passed away on the 1st of November 2016. The worst day of my life. Well in fact the second worst dad of my life. The first being the day that we were told that my mum had motor neurons disease. On the 22nd July 2015. Our whole worlds changed forever that day. My poor mum was told that she had a progressive terminal illness that would just get worse to the extent that eventually she would know longer be able to walk ,eat or talk and eventually ultimately no longer breath. And yet she still tried to protect me from the pain by holding me so tight. I wish we could hold each other again so, so much. After mums diagnosis I moved in with my dad, ( I am a single mum with a five year old daughter) to help look after mum. Mum had spent her whole life looking after me. I struggled a lot with depression and anxiety and put her through way too much pain, which I regret every day of my life. I thought I had so much longer to make it up to her. I then became her official career until unfortunately she waslet down in the community by her and MND team. She developed pneumonia, and though I was begging the team to listen that something was seriously wrong no one did. Me and my dad ( and my brother who lives at a distance) decided to ring 111 and they immediately sent an ambulance out. When we arrived I couldn't believe what they were saying. They said to us all including my mum that she was dying. My dad had been doing constant research on motor neurons disease since my mums diagnosis and found out that by having a trachy it could profiling her life. After much battle and extreme courage on my mums behalf the operation was performed. Things improved and she beat the infection. But now we had another battle on her hands. Due to mum having a trachy we were told that she couldn't be cared for at home anymore and would have to go into a care home. None of us ever wanted this. But we were assured that this would be the safest option. So this next step happened with terrible consequences. After the first week it became obvious to me that my mum was becoming increasingly unhappy and that she wanted to come home. At this point she was no longer eating or walking or talking but still could communicate by writing. My mission was to get mum home even if we had to accept less care. Mum needed a quality of life. Me and my dad were trained in the feeding tube and suctioning for her secretions and teach care. After much fighting we finally managed to arrange a care package to get mum home for Xmas. In fact our date was December the 12th. This is the one thing we all held on too. The unit was appalling in the way that they treated my mum and me and my dad were there from first thing in the morning until last thing at night. My dad would have stayed over and never left her side if he could have. Me too but of course I had to juggle with the school run too. Though my daughter regularly came after school to see her nanny. Mum was in the unit for 14 weeks in total. In the last couple of weeks me and my dad were getting increasingly concerned as mum said she had tightness in her chest , decreased saturation and increased need for suctioning. We told the staff continuously every hour of every day. By this point mum could no longer write and only communicate by limited gesters. All we were told was that mum was anxious, and is as a family, and that they had no concerns. In fact the night before mum passed away we stayed very late due to feeling that there was something wrong, and a nurse said she wasn't concerned. We had a phone call in the morning telling us she was going to hospital. That was the last ambulance ride mum ever had. This hurts so much to write. She got diagnosed with extensive pneumonia and although they tried to treat her it has taken over her body so much.
We all knew that mum had motor neurons disease but she just wanted to get home to be with her family at Christmas. She thought so hard and was so brave. Is so brave. If it wasn't for my daughter and my dad I wouldn't see the point in carrying on. My mum was my everything and I'm so lost without her. I'm trying to be strong like my mum but am really struggling. Even though I'm extremely lucky to have my daughter and my dad around me I still am fighting to hold back my years every second of every day.
My mum was my world.
I miss you so much mum, I have to good into the thought that you are in peace and we will meet again one day x
