I’M SORRY...

    By Anne Scott. Published 2021-04-13


    Author of Sizzling Bacon, Anne Scott, discuses the power of words from a very personal perspective

    How many times have you heard someone saying that if they were diagnosed with dementia that they would not care, as it’s only a matter of losing your memory or that they would commit suicide, that they would be on the first plane to Switzerland. Even media presenters have on occasion expressed what they would do if they were ever diagnosed with a form of dementia, But how does anyone know how they would react, until they are in the position to have to make the choice. How do people say this all so glibly, without thinking how they are going to leave their children and their loved ones, how they are going to overcome the built-in fight to survive. Or how do they choose to live and fight the stigma that surrounds dementia, how do they continue and find happiness. No one knows how they will respond until they are in the situation and have heard the words, I’M SORRY... With all serious/terminal illnesses, upon diagnosis you go into shock and your brain shuts down, you walk out of the consultation in a daze trying your best to hold yourself together and not break down in tears. For some people they will never be in the position to have to make that choice but for the other 54million people in the world who have been diagnosed with dementia, these will be very real-life choices. As we all know words can be an enormously powerful tool, Words can either be enabling or disabling but the word sufferers is continually used to portray those living with dementia. No other illness even terminal illnesses are portrayed in this manner, I have never seen an article where an enabling word such as fighting dementia has been used. People will never know exactly how much disabling words and comments hurt until you are diagnosed yourself and realise the world of loneliness, fear and decisions that you have been thrown into. When I look back on my diagnosis it is a day, that is embedded in my memory. I had been ill for a couple of years and when I started to collapse, I was referred for an urgent brain scan and told that it would be several weeks before I had the results. The next day I was contacted and an appointment was made for me to see the neurologist, I knew if the hospital contacted me that quickly, then it was not going to be good news but nothing could have prepared me for what I was about to hear. I had an awfully long, sleepless night worrying what could possibly be wrong. And as I sat in the waiting room the next morning everything was going through my mind, but I tried to stay positive. I am sure I looked dreadful, pale and nervous, I couldn’t sit still, and I kept fidgeting until the door finally opened and slowly, I dragged myself in. I was desperately wishing, I was anywhere else but here and I didn’t have to hear what was coming. The neurologist pointed to the lesions on my brain and explained that I had cerebrovascular atherosclerosis, he also said that he wanted to check me for multiple sclerosis but reassured me that he didn’t think I would have it. He explained that it would take six weeks to get the results back. The neurologist then said how sorry he was and that there was nothing he could do, he then walked me to the door, shook my hand and said again how sorry he was.Then he closed the door. I walked out of that consultation in shock, I felt sick, panic was rising in my chest. I tried my best not to cry and sat in silence the whole way home, but as soon as I set eyes on my home and thought of my little children a lump rose in my throat and the tears flowed down my face. Even now typing this I can still feel all the emotions from that day and my eyes start to fill with tears. That day I sat in my garden for a very long time, thinking how can I face my children, how can I tell them that I am ill and I will not be getting better, that over time I will be getting worse, possibly much worse. How could I look at their little faces and cause them heartbreak by saying, mummy is ill? But I had no other choice, as much as I wanted to run away and hide from the whole situation, I knew I couldn’t, I knew that I had to do it. Being a single parent there was no one else to turn to, no one to help, no shoulder to cry on and no comforting arms to give me strength. It was just me, me alone to do the hardest job I had ever had to do in my entire life.That day and for a long time afterwards there were lots of tears, explanations and cuddles. Evie was only six years old and Tiana was fourteen. Over the next six weeks I tried desperately to hide the tears from my children, I couldn’t sleep, I couldn’t concentrate, my days were spent trying to find help for us and thinking, there is no way I could possibly have Multiple sclerosis as well. I could not believe that life could be this hard, but little did I know I was going to be in for another shock. The call I didn’t want, eventually came and back I went to neurology to be diagnosed with secondary progressive multiple sclerosis. Then almost a year later I was back in neurology again, I sat in silence, I was numb, as yet again I listened to the words I’m sorry, this time I had been diagnosed with fibromyalgia. Over and over in my head I kept thinking how could this be, how could life be so cruel to give me three serious illnesses in just over a year. I was deflated, I felt beaten into the ground. I wanted to fall to my knees and cry and scream, then just give up. But I couldn’t as I had children to care for. Life carried on and started to be a team effort, Tiana was doing more and more around the home, but she was missing out on school. Sadly, I had to stop taking Evie to school as my illness makes me dizzy and at times I stumble or fall. The harsh words from other parents and the looks of disgust on their faces thinking I was drunk at 8.30 in the morning was devastating to me. At times I could not lift my head of the pillow for days on end, I would have to lie in bed sore and too dizzy to move and the guilt I felt got heavier and heavier. Not being able to be a full-time mum to my children was breaking my heart and the stress caused me to start having panic attacks at night. My heart would feel as if it had stopped and I would be gasping for air which I found terrifying. After a year living in this manner filled with panic, fear and loneliness I eventually found the help we all needed so badly and with their support and empowering words over the next couple of years I rebuilt my whole life. I made new friends, Tiana passed her exams and went straight to work without even having her last summer holiday, Evie lost her baby looks and was turning into a beautiful young girl and I was so full of pride for both of them. I continued to try to help others and wrote a fun, educational book for children and adults about dementia, called Sizzling Bacon.anne scott 2 small .jpgThen just as everything was running as smoothly as it could be, apart from the times when I forgot things or put items in the bin instead of the fridge, sat in an empty bath wondering why there was no water, burning the dinners, falling in the street of into supermarket shelves. Life was getting better and better and we were finding that happiness and laughter was still a big part of our lives. Then another call came and back to neurology I went, I patiently waited and my nerves where building. I was not prepared for more bad news and as I sat very quietly, I looked at the neurologist and thought, if you tell me something else is wrong, I am going to shout, scream, cry and never come back here again, I just couldn’t take anymore. And then the words I had never expected to hear came, I just sat there, I had no idea whether to say thank you or to laugh or cry, or what I should do. Slowly the words registered with me, the words you don’t have cerebrovascular atherosclerosis. The diagnosis was changed you now have chronic small vessel ischemia. I don’t know how I managed to get home that day. I should have been thrilled, I should have been dancing in the streets, I should have been overjoyed and I was. But I also felt sad and terrified, I knew that my change in diagnoses meant I would not get the help and support my family and I desperately needed. I knew that once again, my life was going to change dramatically and that I was going to lose more friends, that the work I was volunteering to do would no longer be possible. That once again, I would be left with nothing and no one to turn to and the stress and loneliness was going to be terrible. No one prepares you for a change of diagnosis, no one says, oh my goodness what can we do to help. No one understands that you still have all the problems, that you still have the dizziness, the sickness, the pains, the forgetfulness, the not being able to drive, not being able to cook and at times having to be helped to the toilet. You are left to move on with your life as best you can. Knowing that in the future, if your brain lesion’s get worse then you are going to once again hear those words, I’M SORRY... you have dementia. But whether I hear those words again or not, I am determined to help others, to find happiness and fill my children’s lives with joy and special memories. And ignore the disabling words that surrounds us in this society just as I have always done. The one disabling word that I had always heard throughout my life was flitter, I was told on many occasions that I never stick with any one thing, but to me I never wanted to. I want my life to be full of love, laughter, memories and events, accomplishments or failures. They are all the things who makes me into the person I am. I don’t see my life as being half empty or not what it should be, and I do not miss the things I cannot do anymore, I have replaced them with things I can do. I am happy and I am delighted that I can still help others. Dementia does not scare me anymore, but some people’s reactions to dementia, can at times frighten and sadden me. Although I am determined to fight, I think we should all understand that sometimes in this life, decisions must be made, and no one can say whether you have made the right decision or the wrong decision. Personal choice and free will must always be respected. But in the same vein we must always remember that disabling words can hurt like a thousand knives, but the power of enabling words can be as tremendous as a thousand helping hands.

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