My name is Allison Batchelor. I live in Dundonald with my husband Tom and daughter Leah. I also have son Ryan and two adorable grandchildren Charlie old and Macy.
Before my diagnosis in April 2017 I knew things where not right and I was making silly mistakes and not coping with every day tasks. I had been to my GP a few times and although I was scoring high on the cognitive tests, I still knew things were not right. It was at this point that I was referred to a consultant and after a few visit’s over an 18-month period I was diagnosed with having Alzheimer’s disease.”
Whenever I was diagnosed with Alzheimer’s disease, I hadn’t known that the disease came under the umbrella of the term dementia. I didn’t know that there was a wide range of different dementias that also come under that umbrella. I think this is a common misconception and the general public still need to be better informed through education on dementia, how it really affects people and the symptoms surrounding the condition.
People understand better when it comes to cancer, there is a whole range of different cancers, breast cancer, bowel cancer, skin cancer etc. I don’t think people realise that when it comes to dementia that it describes a whole range of symptoms associated with a condition.
As you can imagine my diagnosis completely floored me, I was petrified. My misconception of dementia meant I automatically thought of the later stages rather than being aware that someone could actually with live the symptoms, so I thought that I was at the end of my life. I was angry because I felt robbed of my future. It was a case of thinking “Why me? Why not somebody else?” but then I think why not me and why should it be someone else? I just couldn’t believe that it was actually happening to me. I was worried for what the future held, what life would look like for myself and also for my family who would ultimately take on caring responsibilities in the future.
I felt depressed and could not see a way of moving forward after the diagnosis, where to turn for help or know even what help was there, if any. Ironically at the same time I felt relieved to eventually know what was wrong. I was still of working age at the point of my diagnosis and had worked as a British Sign Language interpreter, but my condition had meant that I had to step back from my work responsibilities.
My consultant was great and made a referral to the Dementia Navigator service and within a week I had a visit from my local Dementia Navigator, this was the beginning of me getting my life back. She spoke to me and reassured me and listened to what I had to say and she believed I would benefit from getting involved with Dementia NI.
The navigator also spoke to my husband and through this he also got the support and training he needed. This meant he learned that he had to be patient and that I was still to be allowed to do things myself and it wasn’t helpful if he took over and did the things that I was still very much capable of doing.
Really without the navigators visit, I believe today I would be sitting at home and getting more and more depressed and I know my condition would have deteriorated much more quickly.
After the navigator appointment I quickly had a visit from Ashleigh, the Empowerment Officer from Dementia NI, this meeting changed my life for the better and also my outlook on life. After chatting with Ashleigh, I quickly realised that there was life left to live and that life was certainly far from over.
Dementia NI is an organisation that was set up by five people who had a dementia diagnosis who wanted to ensure that the voice of people living with dementia is at the core of policy, practice and service delivery across Northern Ireland because they felt people with dementia didn’t have a voice. Traditionally it was the carers that were listened to and people regularly made presumptions about what those living with dementia wanted or needed, without even asking or consulting with them.
I have personal experience of this, as on one occasion my husband and I had a visit from a healthcare professional. The questions were all directed to my husband whilst I was still perfectly capable of answering them myself, the focus was all on him as a carer. I sat for so long and listened for as long as I possibly could before finding myself turning to the care worker and reminding her that the meeting was about myself with the diagnosis and not about my husband. If this particular meeting had had been about his caring needs, then that would have been completely fine but on this occasion the focus was meant to be on me, and I felt that I was being completely ignored.
There are many stigmas still surrounding dementia, especially around the terminology used. People often focus on the later stages; terminology is regularly negative and often people like me find it derogatory and offensive. Words such as suffering, doting, do-laly, away with the fairies etc do nothing to help my confidence and self-esteem. Whilst people think making flippant throwaway comments are funny, you would never dream of saying something like that to someone with cancer or another life limiting condition, so why to someone with dementia? Whilst I do not know what my future holds, I am by no means currently suffering from dementia. I completely accept that things can change very quickly, but until they do, I very am determined to keep living my life to the full.
Generally, the public would consider people with dementia to be of the older generation, maybe residing in nursing homes, possibly with communication difficulties, and needing a lot more care and assistance because they wouldn’t be able to look after themselves or make decisions for themselves. The reality is very different and that is not the case at all.
I am living well, I can still make my own decisions, I still drive albeit I must take a yearly test to ensure I am safe on the road. I play tennis weekly, I attend art classes, and I sit on many steering groups involving anything to do with improving the lives of people living with dementia like myself. I am very determined that I am not going to sit in the corner and will make the best of the life that I have to live.
Local charity Dementia NI is an organisation that has given me a voice and empowers me with the confidence to talk at events so that the public, healthcare professionals and anyone wants to listen gains a better understanding of what it is really like to live with dementia and the challenges people like myself face on a daily basis. Dementia NI members also get the opportunity to meet with different professional bodies before decisions are made and we are asked what we think rather than being told what is best for us. People try to understand but unless you are living with dementia you can’t truly understand what it is like. Dementia NI has given me a purpose and a reason to get up in the morning and to keep going, I will be eternally grateful to them.
For someone with dementia having a purpose is vital, otherwise I feel I would deteriorate a lot quicker as I wouldn’t have to motivation to keep going. I alongside fellow Dementia NI members am determined to make a difference for not only myself but for other people living with dementia now, and for those who will come after us in the future. Our local charity we believe, is our lasting legacy.
We liaise with any organisation throughout Northern Ireland to make their services or support more accessible for people with dementia to help them maintain their independence and remain involved and integrated within their community. Simple things like using public transport and shopping becomes very overpowering and at times impossible so knowing that organisations in your local area are understanding means you can go into them with confidence knowing if you get stuck or panic or become confused they will understand and be able to assist you in an appropriate way.
I hope by sharing my story I have shed some light on what life can be like living with a dementia diagnosis. I want to get across that it isn’t all negative, that there is hope. That with the right peer support and understanding from others you can still keep living. I want to help get away from the negative news stories about all the doom and gloom surrounding dementia. I want my story to encourage others to go to the Dr if they have concerns and not be afraid to get tested. If you have concerns about yourself, a family member or friend and you think something is wrong please encourage them to go and be seen. A diagnosis means you get the correct support and you can start living again. I believe that it is only when you accept your diagnosis that you can continue to live comfortably, if you are in denial then life is extra difficult for not just yourself but for your family, friends and those who care for you. If it is ignored the situation will only become worse and you may not get the opportunity to make simple adaptations that will make life easier for you now and into the future.
I’ve pinched a statement that another Dementia NI member said at a conference - “I have dementia, but dementia does not have me.”