Making Sense Of
Sometimes I sit here and try to make sense of it all, I don’t usually succeed but never the less I still try. So, here I am, 53 yrs old, very close to being 54, I have heart failure, Early onset of Alzheimer’s and on Sept the 6th I go into hospital for an exploration op to see if I have bladder or prostate cancer!! Please forgive me if I feel a little sorry for myself for a co...uple of minutes but I am sure you will understand.
Thing is, sometimes, people ask how I manage to carry on, how I keep it all together and how I face each day with all this hanging over me? But the answer is always the same, what choice do I have? How else could I hope to deal with it if it wasn’t head on?? Yes, I could crumble and lock myself away; yes I could just totally give up and refuse any medication saying “What’s the point! And YES I could walk down that very dark road and do something even worse!
Have I ever thought about any of the above? You are Dammed right I have!! I could not look any of you or my family in the eye and say in all honesty I haven’t thought about all of them at one time or another. I was 44yrs old when I was diagnosed with heart failure, my whole world fell apart, I was given less than 12 months to live and I was told I would never work again. But, because of the wonders of medicine, a complete lifestyle change and me being the stubborn B****er I am, I lived to fight another year, only to be told at 50yrs old that I had Dementia!!
Well, you can only imagine what kind of body blow it was for me, and it admittedly took me some time to digest the news shall we say. After I had thrown all my toys out of the pram and finished stamping my feet and shaking my fist at the SKY I then decided to make sure something good comes from this, and so we set out on our Journey to raise awareness and help others as much as possible. Dementia Awareness day was born, and the rest as they say will hopefully become History.
In all this time there are people, who are all Heroes in my eyes, having to put up with the same devastating news and trying to deal with it as well and that’s my family and good friends. Whilst I was feeling sorry for myself and stamping around they were the ones who had to stand by and watch me go through all this, they had to catch me when I fell, pick me up when I was down and bring me back to life when I thought all was at an end. These are the ones who had to deal with all that, as well as try to deal with the bad news that comes along with all this. They had to try and make sense of all this as well as me!
So, to all my family, and everyone of my friends out there, who have walked every yard with me along this awful path, please know that as far as I’m concerned YOU ARE THE REAL HEROES !! As for the Cancer, if it is Cancer, HOW DARE YOU!! HOW VERY DARE YOU!!! Its often said things come in three`s, well, I don’t care if it comes in three`s fours or fives!! With all my family and friends on my side, how can we possibly lose!!!
THANK YOU ONE AND ALL xxxxxxxxxxxxxxxx
Just For One Second
Yesterday, just before the memory cafe, I suddenly found myself walking towards Babbacombe Downs. Now when I say “Suddenly” I mean exactly that! I stood rooted to the spot, looking all around me in a kind of amazement, if that’s even the right word for it. Thing is, I had no memory of how I got there!
The last thing ...I could remember was being sat at the breakfast table with my Angel” Elaine eating my grapefruit. Elaine took my hand gently and pulled me to one side, she had noticed by the look in my eyes there was something wrong and kindly guided me to a seat. We sat there in silence just for a minute while I tried to get my bearings and slowly but surely it all came back. Elaine is not only my “Angel” but also my “Rock” She sat holding me and chatting to me, telling me what we had done that morning and how we had laughed at something on the telly. I couldn’t remember a lot of it but I was comforted by knowing we had laughed, but worse was yet to come!
The afternoon went really well as you know by how I wrote about it, and as the evening blended into night, sleep was very welcomed, but today “Just For A Second” my whole world came crashing down.
I am not only ashamed to say this, but also very frightened but I feel it’s something I have to share with you all. I sat there at the breakfast table this morning; I looked up and there, “JUST FOR A SECOND” was someone I didn’t recognise!! Is this my carer came the question racing across my brain? Then it was GONE! As quick as it came, and there stood in front on me my “Angel” Elaine. As Elaine and I always do, we talked about this and Elaine as always, told me how well I am doing and how well I will continue to do with her by my side. She reassured me of how she will always be there no matter what and try not to worry.
I am at this moment “NUMB” with such a thing happening and the thought of me forgetting Elaine, my family or any of my friends absolutely devastates me, but one thing I am sure of, is with the love of such a wonderful family and support from the best friends in the world, both Real and Virtual, we will get through this, DEAR GOD I HOPE A CURE COMES SOON
All my fears have just come true,
For a fleeting moment, I forgot you,
It wasn’t you, so who did I see?
...Standing right in front of me
I stood there looking, in your eyes,
Deep within my heart cry`s,
Is this the beginning of the end?
All alone, no memory`s friend,
My whole body, shakes with fear,
Heavy heart, Salty tears,
My promise is, with every breath,
To remember you until my death,
I might not show it, but please believe,
Within my heart you will never leave
“A Moment Passed”
By Norrms McNarama
Yesterday evening, here in Torquay we had a break in the clouds, so we decided that we would have a short drive down the seafront and through Torquay. It was just one of those days where the worries of the world seemed to playing on my mind and even worse “My Angel” Elaine’s mind, so a drive down the coast was just a reminder of why we moved here and why we love it here. After a while of “doing What the Tourists do” loll, sightseeing and watching the world go by we set off home through Torquay and drove up to the lights where the Central Church of Torquay is (its name is so apt as that’s exactly where it is !!LOL) Then it happened, I suddenly realised I had absolutely no idea where I was!!!!
My heart started to race as I began to panic!! Nothing looked even remotely familiar!! My eyes scanned the horizon and surrounding buildings for anything that I could remember but nothing!! Apparently according to Elaine a small sharp whimper left my lips which alerted Elaine to my plight. “WHERE ARE WE??? I Demanded!! “Where are we??” I kept repeating.
Elaine, with all her 30 years of care experience managed to calm me down, and started to point out where we where and where we were going. Nothing was coming back to me for what seemed an age and it wasn’t until we pulled into the road we live on that it all come flooding back!! If you remember, this, or something similar happened to me a while ago whilst I was putting my lottery on, but please believe me when I say it’s just as frightening no matter how many times it happens. It’s as though somebody just switches a switch and off the memories go.
For anybody who doesn’t have this awful disease just try, even for just a second to imagine how frightening that is!! It’s truly horrifying!! There have to be others in my position, that are going through the same thing right at this moment, yet we hear very little about this?
Is it because they are ashamed of it happening? Is it because they are in Denial and just put it down to forgetfulness? Or is it because they fear its some kind of insanity which has blighted their lives??
Whatever it is, I believe it’s up to each and every one of us to tell those people “ITS OK TO TALK ABOUT IT!!! “ITS OK TO TELL PEOPLE ABOUT IT” And until we do, until we ALL show some kind of empathy and understanding of this disease, the stigma of this disease will never diminish and the shame that some people feel will never be washed away.
I for one, as you know am quite willing to stand up and be counted!!! And I hope and pray that one day; many more will join me in raising our voices, and together we can defeat this awful disease once and for all.
Norrms and Family xxxxxxxxxxxx”
Someone once said “What a difference a day makes” and how true that is! Just 24 hours ago, there I was, blogging away on the computer and making phone calls trying to sign business’s up for the Dementia Alliance, the next, a complete wreck!! Why? here`s WHY!!
A conversation about holidays began between Elaine and me, and I happened to mention I was so relieved when she said a while ago a...fter the last fiasco up north, that we should try away days for the time being. I knew straight away by the look in her beautiful eyes something was wrong. Slowly and so wonderfully she began to tell me because of recent events with our family there might come a time when she would have to go back to Bolton to visit, and I will have to have someone come in to look after me. I couldn’t believe what I was hearing!! My heart sank so low I thought it was going to start pouring out of my toes. My hands and whole body started to shake and I was really having trouble understanding what else she was saying, this wasn’t good.
Now I know we have touched on the subject of CARE before, but never quite like this, the sheer thought of going longer than a few hours without seeing Elaine absolutely petrifies me!! We have NEVER, like many of us, ever been apart for more than 16 hours in all the years we have known each other. That’s bad enough in itself!! But the thought of this happening now, when I have dementia fills me with a worry I have never felt before!!! I pride myself on saying the only things that ever frighten me are my God and MY KIDS!! But this is so very different. Elaine tried to calm me down by saying “It might not happen for a while yet” but just the sheer suggestion of it made my heart race, my pulse explode through my wrist and my legs go week.
It’s like I am living two lives!! It’s like I have two brains!! One telling me that this needs to happen and it could possibly do the love of my life the world of good, and the other saying “I CANT SURVIVE ON MY OWN WITHOUT HER!!!!! I know at this moment in time, there is not ONE person who could take her place and no matter how well I know them, or no matter how many times I am going to hear “It’s ok, he will be ok with me “ IT just isn’t going to work”!! I couldn’t believe how bad I felt the last time when I had to leave my routine and step out of the Devon Border for more than one night!! I have it in my mind I can cope with one Night!! I don’t know where that’s come from, but I find that comforting. Considering our family live in Lancashire, this is not going to be an option. I also thought that after feeling like this last time it would be just a one off, but now I know it’s not, and the fear I feel about travelling a long distance for so long is so very real!!! For the first time for as long as I can remember, I don’t know what to do or how to react!!!
I cannot tell you how much I HATE THIS DISEASE at the moment!!
I cannot begin to put into words how much I despise this illness and ALL it entails!!!
HOW DARE IT make me feel like this and force myself and the love of my life to be apart for longer than we both wish too!!
WHO THE H**LL DOES IT THINK IT IS!!!!
When/if the time comes when this happens I only hope I am able to tell you all about it, as I hope, as with this, it helps people to understand THE EMOTIONS/FEELINGS AND MANY FEARS THAT MAY PASS THROUGH THE MIND OF SOMEONE WHO HAS DEMENTIA
As always, your thoughts on this would be appreciated,
Best wishes, Norrms, Elaine and family xxxxxxxxx
Poem courtesy of Norman McNamara
Norman McNamara, from Devon, England was diagnosed with Alzheimer's disease when he was just 50. He says “I write about my diagnosis in poetry form and my days thereafter, the high`s, the lows and the terrible times I had adjusting to my diagnosis, but also how I stood on the precipice of life itself and fought my way back! Where there is hope there is life! I do believe a cure will come soon.”
...When I wander don’t tell me to come and sit down. Wander with me. It may be because I am hungry, thirsty, need the toilet. Or maybe I just need to stretch my legs.
When I call for my mother (even though I’m ninety!) don’t tell me she has died. Reassure me, cuddle me, ask me about her. It may be that I am looking for the security that my mother once gave me.
When I shout out please don’t ask me to be quiet…or walk by. I am trying to tell you something, but have difficulty in telling you what. Be patient. Try to find out. I may be in pain.
When I become agitated or appear angry, please don’t reach for the drugs first. I am trying to tell you something. It may be too hot, too bright, too noisy. Or maybe it’s because I miss my loved ones. Try to find out first.
When I don’t eat my dinner or drink my tea it may be because I’ve forgotten how to. Show me what to do, remind me. It may be that I just need to hold my knife and fork I may know what to do then.
When I push you away while you’re trying to help me wash or get dressed, maybe it’s because I have forgotten what you have said. Keep telling me what you are doing over and over and over. Maybe others will think you’re the one that needs the help!
With all my thoughts and maybes, perhaps it will be you who reaches my thoughts, understands my fears, and will make me feel safe. Maybe it will be you who I need to thank. If only I knew how...