Sometimes I start crying, the simplest of things set me off. We spent so long confined to the house that routines where built to get through the day. The routines changed as my mum’s health and dementia took their toll but it was always routines of each day and trying to keep pace, get through and survive in many ways.
The other without thinking I looked at the clock and thought I better get dinner on, as this was part of our routine dinner, medication and bath for mum but only for a second then I realized there is no routine and that’s when the tears started. My mum is gone, a mum who was always my friend then became my best friend and this started a process of tears and questions, we were so busy trying to keep pace that we never asked enough questions.
The biggest question of all is what happened? one day I was care free probably to care free and certainly not planning for the future and mum was home in Glasgow, then a visit home to a tragedy was waiting, a diagnosis of dementia; with no guidance, no understanding and there began a 5 year journey.
Always a step behind even at the end not quite sure what happened, yes there where mutterings of end of life care but as with the diagnosis, no real guidance support or advice and as I try to figure out what happened to us over the last 5 years the only answer I can come up with is we never really stood a chance. We were never really informed of much the whole way through and were lost as were many people involved in mum`s care and that’s what has to change in this dementia journey. The journey needs more planning, more information, more understanding and the support from people who know more than we do.
It’s hard to figure out what happened over the last 5 years as we never quite knew what was happening at the time and the crying that happened all along the journey happened so many nights like tonight as I cry myself to sleep but at least I know why, A mum like mine is worth crying for. I wish it was only tears because I missed her but it’s mixed with tears for a mum who was in many ways let down by the lack of understanding of her illness and what she and I were going through.