My name is Ray Fallan, I am 55 years old and I have a voice.
I met my husband James when he was 22 and I 20. We knew instantly that we were made for each other. Now back then in the west of Scotland, there was a very real religious divide. We didn’t care. It was very difficult at times but we were very happy and set up home together. Not the done thing back then, but we were in love and rebellious. We won the religious divide battle, brilliant, don’t you think?
We brought two beautiful girls into the world, Charlene and Dana. Our family was complete. James and I worked hard to give the girls a good start in life. Everything James did in life was for his family. He was a real hands on dad. Everyone adored him.
Our two daughters are now married to two wonderful people, we also have three perfect grandchildren. This is who we are as a family.
Who did we become?
Well, I became a full time carer to James. I can’t remember when I stopped being his wife, but, the title wife got replaced by carer.
I should have remained his wife. James should have remained my husband. As we went through the below journey together, our titles changed. Why? We were meant to be together till death do us part.
Strangers came into our lives via the dementia invitation. These strangers tried to take over and eradicate the meaning of being a couple for 35 years .This caused a metaphoric “divorce” of who we were. James, myself and our daughters became unimportant in decision making. Who are these people, these strangers intruding on our family values?
We were de-humanised. We became a statistic, we became a burden to the care system.
Our human rights were removed in all aspects of our family relations, right down to not being able to spend grandparent quality time with our new granddaughter. We missed out on so much. Here’s why.
When James was 50 in 2012, he began to show signs that all was not well with him. After a very long journey, he was eventually diagnosed with CBD, Cortisol Basil Degeneration, and frontotemporal lobe dementia, this was in May 2017. Yes, five years later.
James’ delay in any diagnosis or treatment had a magmatic effect on our lives. I was burnt out, trying to keep my obligations to work, trying to manage and appeal for treatment and care, not getting sleep and trying to keep my husband safe from harm. Under medicated, he was eventually sectioned in Nov 16 for an eight month period.
Now SDS. I thought SDS was going to be our saviour. That is how it is sold. Wow, how wrong. For us, it was a war to be fought but never to be won. I have yet to secure a concrete SDS package that was adequate for James’ care and needs. I am still waiting on a carer’s assessment, what about my needs?
The temporary SDS budget was not enough to provide the care James needed. I was off work for eight months trying to fill in gaps. This caused another set of financial worries. James needed two on one care. The budget was only enough for one support worker, for 4 days a week. On the other days, I was on my own.
James deteriorated further. I could not lift or pull him around anymore. How would I medicate him? In total distress, fear and worry I had no clue what to do.
James passed away on the 14 Feb 2018 in St Andrews hospice. Just nine weeks ago. Whilst the care he received in the hospice was impeccable, it was not what he or our family wanted. A dying wish removed. Is this acceptable, would you accept this?
Who have we become?
I can only speak for myself here. I can’t speak for our daughters and extended family. But I know I need them, I know I love them, I know I need to go back to being a mum, a mother in law, a gran, a daughter, a sister and a friend. How do I learn to do this again? How do I bridge the gap that occurred during this journey?
I am a widow. How do I be this title? Where is the post carer support? How do I return to my job when I feel like I am a stranger in a position that I have successfully filled for 11 years? How do I create a life for myself when much of the friends we shared have lost contact because my life was filled being a carer instead of a wife. I have since left my old job and taken up a new role as dementia coordinator for Newmains Community Trust where I’ll be using my experience to help others living with dementia in the area.
However, I have also made many new friends on this journey. Natasha and John, featured on this website, are two of them.
I have started my own group with the encouragement and support from TIDE and GBT SWIIFT Shotts. I now have a support group of my own constituted. My group has a name. Fortissat Dementia Support. This group has been set up to support people locally in my area. I have a voice, my group has a voice, and you too have a voice. I am not going away.
I have become a warrior. I have lost the battle with dementia and social care. But please hear me when I say, I have not lost the war. Here I stand before you, in battle, to help to bring changes that are paramount to living well living with and post living with dementia.
This is me.