What I am about to say is the TRUTH

Good Morning Everyone.

Firstly, I would like to thank TIDE and Life Changes Trust for giving me the opportunity to speak to you today.

My story may upset some people in the audience today, I can’t apologise, because what I am about to say is the truth.

I may be become a bit overwhelmed by emotions today whilst speaking, if I do, please bear with me for a few seconds until I regain my composure. I want to try to explain the volcanic eruption dementia has had on our family and friends. First, you need some background information.

So who were we?

My name is Ray Fallan, I am 54 years old and I have a voice. This is my husband, James Fallan, Very handsome, lucky me, don’t you think? 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? James was a very hardworking man, an electrician and I was a hairdresser.

In Dec 1986 on Christmas Day, James gave me a letter as a gift. It contained the details of our forth coming marriage that I knew nothing about. He had arranged a full wedding as a gift to me. We were married two weeks later on 07 Jan 1987. I don’t know how he managed to keep it a secret, as he had been arranging it for the previous nine months.

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.

James and I continued through our life having family holidays and fun, working hard providing for our wee family. We as a couple continued to have lots of fun together too. We were known as the life and soul. In 1989, we appeared on

the TV show “Tarby’s Frame Game”. We were well known for fancy dress parties, here are a few pics. We loved it.

The girls grew up and left home. It was bitter sweet. Our kids had flown he nest, what were we going to do? Well, we went on holiday again and again and we had a ball. Our two daughters are now married to two wonderful people, Charlene, to our daughter in law Gemma, Dana, to our son in law David, 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. Why? Could this have been different? Yes it could have. Yes it should have.

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.

Wrong!

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.

The human rights for all of us were totally violated and it was violent. Our daughters lost the “daughter” title the first day they had to take their dad to the bathroom. Is it acceptable for young women to see their young dad naked and vulnerable? Is it acceptable that their dad had to give up his dignity so that he could go to the bathroom? This is what we were expected to do and to do it without any fuss or complaint. Would you accept this?

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. Could this have been better? Yes, definitely. I believe that a speedier referral to a neurologist should have taken place, and the results should have been communicated with us. In turn, appropriate medication could have been administered and allowed us to live better. I also should’ve been listened to much earlier.

CBD was his primary diagnosis. It is a very rare, aggressive and devastating form of dementia and falls under the Parkinson’s umbrella. It is a completely debilitating disease both mentally and physically. It leaves patients with insight to the world around them but no insight at all, that that they themselves are ill, it also affects memory, but not in the way Alzheimer’s does. Sometimes, parts of the brain suddenly kicks in and works, although very temporarily.

I remember one Sunday last year, part of his brain kicked in and he was lucid. I had struggled to lift him of the chair, into a wheel chair, lift him onto the toilette and the same struggles occurred on the way back to the sitting room. It was the sixth time I had carried this out on this day. I was in pain, my shoulders and knees were bearing the brunt of the strain of lifting him. I started to cry as I was causing James a lot of pain too by pulling and lifting him on my own. He was in agony. He saw I was crying and upset and said to me, “Ray, I know how hard this is for you, I’m sorry”. The memory of this apology haunts me still. James’ delay in any diagnosis or treatment had a magmatic effect on our lives. I had repeatedly contacted social work, explaining how desperate our situation had become, 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. He became paranoid, suspicious, frightened, aggressive, violent and suicidal. I had to call the police so that he could get help. Again, appropriate early intervention I believe, may have prevented James being detained.

James was eventually discharged from hospital in June 2017. Could this have been done better? You bet it could. With appropriate medication James would have had an earlier discharge, our family would have made happy memories during the time he could have been at home. After his discharge, within two weeks, he lost his mobility.

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 for the provider 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, there was no support Wed, Sat and Sundays. I was on my own.

Eventually I pleaded to have further assistance. Why did I have to plead? Up the budget was the simple answer. Easy right. Oh no, LEGs and SWEGs, LEGS and SWEGS = long, long periods of suffering. Still no concrete budget, still one support worker. Me still not at work earning, our family worrying about both parents. Is this acceptable?

James deteriorated further. I could not lift or pull him around anymore. He had begun to lose his swallow. How would I medicate him? In total distress, fear and worry I had no clue what to do.

A McMillan nurse came along and said that she would make arrangements for James to be taken to St Andrews Hospice to give me a break and to assess James. Immediately, the staff from the hospice came to me to say that they did not know how I had managed at home on my own, as it was taking four members of staff for them to manage at any given time. James passed away on the 14 Feb 2018 in the 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? I’ve learned that you grieve whilst the person you love is alive. 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.

However, I have also made many new friends on this journey. Natasha, beside me here, is one of them.

I have started my own group with the encouragement and support from TIDE, LIFECHANGES TRUST 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. We all have a responsibility in this, and even the shortest interaction with someone or the smallest action can make a big difference to people and can make this horrible journey a bit less hard to bear

I have shared my story in public before, James was still with us then. Someone followed me with the phrase “to finish on a positive note”. Can you imagine what that phrase did to me and our story? It undermined the journey, it undermined us. It downgraded the horrendous journey we were on, it made James non important. I wish everyone who is living well with dementia continues to do so and I hope that many, many, more people in future can live well with dementia too. I sincerely hope and wish for their journey to continue in this vain.

But please do not put people living with this disease into positive story or negative story categories. Do not discount or quieten anyone who is not living well with dementia. Welcome all stories, because no matter what their story is, it has value. It counts, people count, individuality counts.

If anyone out there is struggling or not living well with dementia and are having difficult journeys, join us. Bring us your story, collectively our voices with pave the way for a better care system.