The most painful experience in my life has to be my mother's passing. I believe it makes a difference how your loved one was before the main event; in this case my mother had dementia.
My mother died nearly six years ago, I haven't been able to write about it until now. I guess I have been 'inspired' following the death of a dear friend of mine who just missed out on celebrating his 90th birthday. My mum had just turned 70 when she died. I was sitting with my friend and musing over how different it felt, to sit and hold the hand of someone who not only knew they were going to die, but could still talk about it. My mother had stopped talking for quite some time before her death. I wasn't able to talk about it with her or to find out if there was anything she needed me to do for her. I had to wing it. Do what I thought was the right thing by her. Ensure she left this earth with her dignity and that she was as comfortable as she could be.
When my brother and I made the decision not to continue with any further medical intervention my mother was just sleeping. She hadn't recovered following a massive stroke on the operating table. She looked so peaceful and was curled up in the fetal position. The next day I felt as though I had woken up in a horror story, the noise coming from my mother was terrifying. I later discovered it is known as the 'death rattle'; sounds often produced by someone who is near death as a result of fluids, such as saliva and bronchial secretions,accumulating in the throat and upper chest.
I could cope with what I thought was a peaceful exit, sleeping quietly with no fuss. But the death rattle threw me into such distress, I called for help. I wept and begged someone to make it stop. This was how the days would continue; the rattle, the weeping, the tube to draw out the fluid to quieten my mother so that I could sit and read to her and feel like everything was the way it needed to be. Each day I could not enter the room first, I had to send my poor husband in to make sure I wasn't going to find her dead or rattling. She was kind to me, she waited until I wasn't there to pass away.
My mother became old too soon. She woke up one morning at the age of 59 with rheumatoid arthritis and things were never the same again. I became her carer, at the same time bringing up a small child on my own. She became more needy and dependent as the years rolled by and I honestly felt that she was ruining my life. Ruining my son's childhood. I resented being the one who 'got stuck' with caring for her. We had not had a good relationship over the years; yet she was always there for me, it was my turn to be there for her.
One day my mother was taken into hospital, she was confused and disorientated. She had a urinary tract infection, which is known to cause confusion in older people. My mother was never the same again. It had exacerbated an underlying problem that I had no clue about, a scan showed ischemia on her brain, she'd already started the terrifying journey into dementia. When I thought she was giving up in the past; wanting to be totally dependent on me; her brain was already dying bit by bit. She went downhill fast.
I tried having my mother living with me, and it breaks my heart in two that I couldn't cope, I couldn't put my son through what living with dementia means for those left behind. I say left behind because the grieving process starts long before the body dies with the brain. She went from sheltered housing with extra care into a care home. She was in and out of hospital with long stays of up to 6 weeks at a time. It wasn't until almost the end of her life that we discovered all those unexplained bruises and falls were down to having seizures.
Dementia is the cruelest of diseases. I had to stop my heart ripping through my chest when she used to call me mummy. Telling everyone that her mummy was visiting. At other times I could feel her distress at her own situation. One day she just stopped talking. Sometimes I felt that she blamed me for being where she was and how she was. On her 70th birthday she spoke, she said "I can't stand this". That was it; nothing before and nothing again after. I told her how sorry I was that this had happened to her. She was a good woman. A hard working, honest woman.
Something remarkable happened for me though. I fell in love with my mother. All those troubled years melted away. Feeling that love for her was a wonderful feeling under hideous circumstances. I would have killed to keep her safe and well cared for. I would have killed anyone that hurt her. She had become my second child, and I loved her.
A friend said to me recently, discussing his own grief : "When you see through my windows, with my curtains half drawn, this is probably a little of what you can see" That is me, and that is my pain, I don't know when the curtains will be fully drawn again.