Cheers to my darling Mum!

 My darling Mum died peacefully at home yesterday (New Years Eve) at about 6am. 

It wasn't quite how I had imagined it. Dad and I were asleep, Dad in the same room as Mum, me less than 3 metres away and I heard a gentle knock on the door. Alison from Marie Curie had been with us a few nights before and I knew she only knocked if there was something wrong. 

I also knew from the gentleness of this knock that she was going to tell me Mum had died. Those dreaded words we knew were coming but never wanted to hear. Alison had woken me so I could tell Dad. Dad's first reaction through howls of pain was exactly the same as my quiet thought had been. 'I wasn't there. I wanted to be there, I should have been there'. He was there. He was in bed right next to her but we weren't awake and holding her hand. 

Truth is we had started the day time vigil but we didn't think she was going to die that quickly. And we were both knackered. We had been awake for over 48 hours because Mum had been so anxious and distressed until the syringe driver was inserted at noon the day before. As soon as Alison arrived we had gone to bed to sleep. 

To wind back a bit;

When Dad was in hospital having his hip replaced Mum deteriorated quickly. She stopped being able to walk unaided and was starting to be incoherent and engage less. I was extraordinarily worried she may die before Dad got home. He was discharged as quickly as possible. He was home with Mum where he belonged. Wish number 1 achieved. 

I had picked Dad up from hospital and talked him through Mum's deterioration both physically and mentally. That evening after I got Mum to bed I asked Dad whether I had prepared him well enough. He sat with his head in his hands and through tears said 'I didn't expect your Mum to be as bad as that'. 

Over the next few days as we got into a new rhythm of care, we had a morning and evening visit for Dad, 2 visits a day for Mum, as well as visits from the District Nurse, the palliative care nurse, the doctor and folk from Marie Curie UK. 

We moved from Dad and I caring for Mum together, to me caring for Dad and Mum together. 

Mum had made it clear she wanted to last until Christmas Day, see all of her children, by which she meant, me, the two grandchildren, and her five great grandchildren  

As the days got closer we weren't sure if she was going to make it. She lost mobility, moving in less than 4 days from walking with support, to walking with a frame, to moving from chair to bed on a glider commode and getting anxious and panicky in the standing up, moving round and getting down.

She was eating less and less, yet getting more and more of a dead-weight. Carers are not allowed to lift someone and so I was lifting her. When I asked how we were supposed to manage this I was told that all of the equipment required Mum to be able to use her upper body which she couldn't.

Our options were starting to look like a) I do my back in and we risked dropping her (we came scarily close a couple of times) b) she wore a pad and was moved to bed or c) she was taken to a community hospital or hospice. 

Mum wanted to stay at home. She has always hated hospitals. But we had agreed right at the beginning of her plan that if she absolutely needed to then she would go. Dad and I agreed to stick our heads in the sand until after Christmas.

Each day Mum and I would look across the photos in the lounge and talk about the different people in them. As time went on I did most of the talking and Mum would stroke the faces with love in her eyes. On Christmas Eve we think she may have had a bleed or a mini-stroke. She couldn't remember my name and she couldn't coordinate her left leg any longer. She called me Sally, George and then settled on Father Christmas with a smile. 

Christmas Day: her goal was achieved. All her children were there and precious memories made. Wish number 2 achieved.  

As the children left Mum put her head in her hands and slept for the rest of the day. That evening with the help of a neighbour and the carer we got Mum changed and ready for bed. At pill time, she took them and swallowed one by one (I was astute at checking by now), took a gulp of water and then spat all the pills and the water out as hard as she could. As she did so she smiled with mischief and defiance. We tried again. They weren't going in. At the time that felt a bit scary. Now without the worry of her not having the pills, that is a moment to laugh at and hold in my heart forever. 

Mum didn't get out of bed the next couple of days but she was calm. Dad and I spent a lot of time in talking to her as she floated in and out of sleep. I spent an hour or so talking through the amazing memories I have and kept saying 'that is why you are the best mum'. As I left the room with tears rolling she said loudly 'I am the best Mum'. Another moment to treasure.

28th, 29th Mum was in a lot of distress. It was awful to see. We had nurses and doctors called in through the night. She was in a hospital bed with side bars. There was a gap at the bottom of the bed. I spent the night lying on the floor with my feet in that part of the bed to try and stop her getting out of/her legs falling out of bed. All the time she was calling in distress. She would say often I want to die, I want to die. I kept telling her that her job was done, that Dad and I would look after each other and we had people to support us. I told her that her legacy was enormous, and that we loved her, we loved her, we loved her.  

Finally after what felt like a lifetime at midday on the 30th she had a syringe driver inserted with pain, anti-anxiety and anti-sickness drugs. She was rolled onto her side. She went to sleep and she didn't move again. Dad, my cousin and I took it in turns to sit with Mum until Alison from Marie Curie arrived.  I was so exhausted that I briefly went in and sat with Mum told her I loved her before going went to bed expecting to wake up and start again. 

Instead I got that gentle knock on the door and the news we were expecting, braced for, but nonetheless still ill-prepared for.

This last few weeks has been a lot. It has been tough physically and emotionally. Tired and emotional  doesn't even describe it. Mum was a beautiful woman. She held us well and taught us a lot. It has been a privilege to be with my folks since her diagnosis in August. We have made a lot of memories. And we have received outstanding help and support from brilliant people in a health and care system that is stretched and fragmented at best, and completely broken at worst.

So here we are at both the end and a new beginning. A new chapter where Dad and I will have to learn new rules and create some new traditions. 

All I can hope is that we take that learning and the courage, love, gutsiness, humour and kindness of Mum - Margaret - into the next stage of our lives. 

We drank *a few* glasses to toast Mum last night. We received endless messages of love and support which comforted and consoled us. We laughed and we cried. Dad said she had to die yesterday as she wouldn't have wanted to be alive when we aren't in the EU! 

Mum may not be physically with us any longer, but what she taught us by example will remain. 

A big cheers to Margaret Ann Blake, my lovely lovely Mum. 

There are some earlier blogs about living with my folks since my Mum's cancer diagnosis in August through to the time she timed