The last thing anyone expects to be told at the age of 54 is that they have dementia. Sadly, this is becoming more common now a days as Davie McElhinney knows all too well.
Davie who lives in rural Fermanagh was exactly this person, told at the young age of 54, one year ago, that he is now living with Fronto-temporal dementia. Davie lives with his loving wife and his adored children who are in their early 20’s.
“A few years before my diagnosis things were beginning to happen, these are things my family were noticing more so than myself. Retired from my main job and living with chronic depression and PTSD as a result, these things were becoming more prominent. As time went on and following several traumatic incidents in the wider family circle and community, things began to surface more clearly. My wife began to really notice that I was doing strange things, this was less obvious to me. Some of these things included, losing my car in the ASDA car park and at the hospital, thinking it had been stolen! sugar being put into the fridge, losing keys and tools. I was forgetful, I was forgetting where to put things back, in my own home and workshop. This should be second nature to me, but I was forgetting. It was the day I forgot my daughters school event, totally forgetting and going off and doing other jobs, this was upsetting. I felt really annoyed with myself about these things.
It was at this stage that I was now starting to notice things happening, but I was trying to ignore it, putting it down to other medication causing side effects. When I look back now I was really in denial, about what was happening to me and what was going on. At the age of 54 it never even crossed my mind that I could be living with dementia. I honestly believed I was developing a brain tumour and I was keeping all of this to myself, I was scared. In hindsight keeping it to myself was no good, there was a big pressure on me to hide what was happening, to my family and to the community.
My family were getting more concerned about me and the things that was happening, so my wife decided I had to see my GP. The GP carried out an initial test, I don’t think I done very well and the results showed that something may be wrong. I was then referred into the memory clinic. When I got my letter to attend, I didn’t show it to my wife or family, I didn’t want them to be upset, or to worry that this could be more sinister.
Whilst I was getting memory tests and visiting the memory clinic I still never made the association between myself and possibly having dementia, I just didn’t make the connection. I think I was really in denial at that stage and it was beginning to be a big strain on me. My wife would have discussed with my children about the problems I was experiencing but we didn’t speak about it together. I just didn’t want anyone to know at his time, maybe it is a male thing. I just wanted to solider on as if nothing was happening.
I had an MRI scan and a CT scan after the memory tests. As time passed I had put all the thoughts of any illness out of my head, I was bumbling along. I was then called forward to see the Consultant Psychiatrist on the 19th May 2017. From initially seeing the memory nurse to getting this appointment it took around 6 whole months. Arriving at the hospital still not associating anything to do with dementia and convinced I was going to be told I had a brain tumour, I was shocked and numbed when I was told “you have early onset dementia”. It was such a blur. This is a day I will never forget. It was the day that my world fell apart. I don’t feel this appointment went very well, my wife and I left the hospital room in total shock, I was unable to speak, and my head was in turmoil. I had just been told I had Fronto-temporal dementia.
A form of dementia which I now know affects the frontal and temporal lobes of the brain.
I was numb, I thought my life was over, I thought I had months to live.
I didn’t ever want to discuss this diagnosis with my wife or family. After I got home from this life changing appointment on a Friday, I felt so lost, I had no information and made the mistake of going on “Dr. Google” straight away. My wife felt completely numb and had so many questions following this diagnosis. We didn’t get to chat to anyone following the diagnosis as it was a Friday. I then spent most of the weekend googling what I had, what was going to happen to me, self-diagnosing and this was a complete disaster. I was very angry, in complete denial and did not want to accept my diagnosis. I became very introverted and depressed and could only think of the worst. I knew people who were living with dementia, but in the advanced stages and this also scared me. All this really set me back. I told my children I had dementia, I told them this and no more, I didn’t know anything else, apart from the things I had read on the internet which was not good.
The sadness began to kick in, thinking of all the things I might never get to see, like my daughter’s graduation in 2018. I just went through the motions of living for a while.
It was at this stage, thankfully, that we were visited by a Community Psychiatric Nurse (CPN). She was amazing, she set about trying to reassure my wife and myself that I was very lucky as I had been diagnosed early. This is something I now know is very important. My CPN called weekly and slowly began to make me see sense and encouraged me to join a local social farming group which I enjoyed. As the months passed I was still struggling to come to terms with this diagnosis, I was terrified of the implications for my future, what would happen to my family and children. Little things really began to scare me, like missing out on my children getting married, milestones that most people in their 50’s never give a second thought too, like seeing grandchildren. The fear and anxiety about my future kicked in, things like, paying for care later, can I afford this, will I need it? I was very concerned, the words of the consultant the day I was diagnosed rung very loudly in my head “get your affairs in order”. I was so panicked that I was going to die.
Not long after this I hit rock bottom, a combination of medication changes and the fear of what was going to happen in my future. Luckily, I was still in contact with my CPN and she recommended that I contact Dementia NI. In November 2017, I lifted the phone and called the number I had been left. I got through to the Dementia NI Programme Manager Tara. It was the best call I ever made. I was quite emotional, everything just spilled out. Tara passed my details on to the local Empowerment officer, Paula. Paula contacted me and invited me along to their next meeting in Irvinestown, Co. Fermanagh . I was very nervous, I didn’t know what to expect but as soon as I walked into the room I was immediately put at ease. Two people introduced themselves, they also had a diagnosis of dementia and they where just two lovely people who put me right at ease. I got so much out of that first meeting and I finally realised I was not alone anymore. We had our Christmas dinner and I met one of the founding members of Dementia NI, John, who also lives with dementia. I spoke to John briefly that day, but from speaking to him I knew my life was NOT over and that I had so much life ahead of me. John is an inspiration to me and he gives me the power to carry on. The empowerment officer arranged for him to visit our group again where I got to speak with him in more depth, he showed me anything is possible and living with dementia does not have to be negative at all. My life has now changed since joining the Dementia NI group, I am more active. I have one to one personal training, I swim with my friend, I do the Newsletter puzzles daily with varying degrees of success, but none the less I do them and I can. It is all about keeping the brain as active as possible. I really believe Dementia NI has saved my life.
To this date I have met some incredible people all living with dementia, normal people getting on with their lives and making the very best of it. I am no longer angry and in light of Dementia Action week and joining the local Empowerment group in Irvinestown, I have now made it my goal to make things better for people living with dementia in the health trust but for the public in general. Through Dementia NI I have got to speak to very influential people to get my views and personal experience across. I also deliver awareness sessions along with Paula to students, care workers, the public and anyone who wants to know about dementia.
We are just normal people, I can see that now. We don’t want to be treated as second class citizens and told what we need and what is best for us or what we can and can’t do. We are not stupid, and a diagnosis of dementia does not make you go stupid overnight. It is my goal to fight for a voice, for all of us who are living with dementia. To improve the service we received, to ensure that people with dementia are being given as many chances as anyone else in society. This year I have made it my goal to also change how people are diagnosed. Following our own experience, my wife and I discussed how important it is that there is a trained nurse available outside the consultant’s room. We went home feeling so lost, so numb and had so many questions. Had there of been a nurse there we could have had our mind put at ease and been able to ask questions instead of spending the whole weekend on google. I am trying to make sure this available for everyone, so they don’t have to feel the way we did. We want everyone to be able to get the answers they deserve about their dementia. Understanding my illness has left me better able to face it head on, I now take it day at a time. I don’t think about yesterday and tomorrow has not happened yet. I live in the moment and set myself one goal to complete every day. I initially struggled with telling people and wanted to hide my dementia. Telling my son and daughter only and not telling anyone else. This was holding me back and it was becoming a great burden, so I decided to tell my friends and my parents. This was a very big thing, but I felt a great relief and I didn’t have to live a lie anymore.
I would like to thank my CPN, the wonderful staff and members of Dementia NI, my very good friends for their support and to my family, who support and love me every, they help make my life easier for me.
I would urge anyone who suspects memory problems or other symptoms to go to your GP, it may not be dementia, but its better to have it checked out.
And yes, I am going to my lovely daughter’s graduation later this summer and I am really looking forward to it. I have plenty more milestones to see”.