I was feeling great. My memory has improved, absolutely brilliant! The medication I have been given (Rivatigmene) is really working. Yay!
Here I am just living. Living normally. Nothing wrong with me. Move along nothing to see. Yeah I was diagnosed with Alzheimer’s in 2012 but I don’t have dementia. It doesn’t really affect me, nah… Actually I can hardly believe the diagnosis. I am fine. I am ok, nothing wrong with me. I am normal.
Then:
My dreams have been horrible. Every night the same sort of dreams. I am trying to get somewhere but somehow can’t remember the way. I walk miles, get on buses, trains, but then realise I am always going in the wrong direction. The last dreams were about travelling, forgetting my luggage, my passport.
Rivastigmene does that but so does Alzheimer’s.
I scream inside every day that I am not affected by Alzheimer’s. I think I am lucky because I have been diagnosed early and I still have much time before I am lost. Lucky: think of that. Lucky that I am relatively normal. Lucky that nobody can guess that I have Alzheimer’s Disease/Dementia. Lucky that when you speak to me that you can’t recognise the signs that I have no recognition of our previous conversations. I am that good at that, pretending I remember. I am that good at reading situations to understand what is going on.
Anyway, a month or so ago I went to join some really great research trial, but found that my memory was not poor enough to be included. Gutted. This particular research trial was producing some great results.
That’s okay I thought. My memory has indeed improved which for me is brilliant.
This couple of weeks, I feel my memory has again slipped back. I feel like I am just getting by, day by day. I don’t like to let anyone know that I am feeling a bit ‘dull’ again. I don’t want to acknowledge to myself that my memory is beginning to be a bit ‘fogged’ again. It’s amazing how us people with memory difficulties mask them. Isn’t it?
I have also realised that my understanding of descriptions have been compromised. I recently had a conversation with someone about a journey. “where does this bus stop go to”, the answer was a detailed description about the neighbourhood and the complete routes. I had no idea whether my question had been answered because I was so confused by the description of the bus route. I then realised that I can only understand a yes or no answer to the questions I ask. You can’t expect everybody to do that, and to have to explain that you can only understand ‘Yes or No’ to the answer you ask is asking something special that most people don’t understand.
FUCK, FUCK…….. FUCK.
Sorry about that, but this is how I feel. I am so frustrated because no one understands me, and never will.
I have Alzheimer’s without any apparent symptoms. I have Fibromyalgia with very apparent symptoms, since I need to walk with a stick. I want to scream and shout that my life is not over yet, but you do need to make allowances for me.
If I want to walk distances that I can’t cope with, then I will do it because I choose to. If I appear not to have any organisation in my life then, don’t worry. Its not important to me.
I live day to day. Experience to experience. I to go the Therapy Centre to exercise on a twice weekly basis. I have been given new medication from the Pain Clinic to cope with the pain from Fibromyalgia. I enjoy doing my upcycling furniture at home, and crafts. I still enjoy reading and reviewing online for publishers. I enjoy helping to raise funds for the West Berkshire Therapy Centre I attend.
Every day I get up, read the news, look at what is being achieved for Alzheimer’s Research, and with my colleagues who are tirelessly working with Dementia Awareness. Then get on with my day to day living…..hoping that today is not the day I need to contact my daughter to say that I feel wobbly and maybe she needs to make sure I am ok.
Right now I am okay. Some days a bit wobbly but most days okay.
Handbagwarrior; verbal ramblings 
Gill, I am so sorry to hear that you are having such problems again. It seemed like you were doing so well, traveling and all. Yes we are good imposters at making it look like everything is OK. Dementia is a lot of work to appear normal. Remember that you have friends here that care about you, and it is okay to not feel okay. Just be yourself. You are a good friend, and I miss our conversations. Take care.
LikeLiked by 1 person
Thank you. I feel like I do nothing but moan to you all, but actually its because you do understand what I am saying. So thank you again.
LikeLike
I’m so sorry to hear about the difficulties in conversation. It must be so frustrating to be an intelligent lady struggling so hard on the inside (and appearing ‘normal’ on the outside, except for the stick of course).
I’m glad to hear you are still doing the exercises, furniture and craft work. It must give you some satisfaction in doing that, but it can make for a certain amount of loneliness in being unable to cultivate friendships outside what you already have.
I’ve never really found someone who knows how to be silent and just enjoy the presence of another human being. Sitting in the Garden or watching a film or going for a walk in nature. The occasional comment on a small detail that requires a simple answer. Someone who radiates warmth and understanding, who can perhaps help when it is needed, but not draining in the constant ‘talking and doing’.
I think maybe that’s what you need…… companionship or someone who can appreciate the simple things in life. Someone who can rise up to the challenge of being around but not demanding intense concentration.
LikeLiked by 1 person
Oh my goodness Vicki, you have hit the nail on the head, so to speak. Yes yes yes, thats exactly what I need. I love my quiet times, my alone times. I do have some friends that share my passion for up-cycling and art where I live.
But, just to enjoy the small details of life without the constant in depth conversations would be great……
My concentration is pretty poor which makes it hard work to keep on ‘talking and doing’.
You are so perceptive.
LikeLiked by 1 person
Perhaps because that’s what I need to, Gill. That’s why I understand some of what you’re going through. I dread any sort of socialising as I can’t keep up the conversation. I get really exhausted having to concentrate on what people are saying, so ultimately, I prefer to not socialise at all. I’m a little deaf too. My few old friends have good health, money and the energy to do mostly what they like in retirement.
I’m not at the stage of sitting in a rocking chair watching daytime ‘soaps’ on the tv, but I do need undemanding activity. I can’t multi-task either. I make lists and routines, because that’s how I cope (with health symptoms).
To be honest, perhaps that’s why I never married. I never found someone who knew how to be silent and enjoy the simple things in life. I love travel and seeing alternative cultures and lifestyles, but have to be content with armchair travel now. I’m becoming more spiritual in old(er) age too. More philosophical. I see how beautiful life can be without that constant need for material possessions, career & wealth.
LikeLiked by 2 people
So sorry to hear about this. Try to be strong and keep the doctor informed of all your feelings or changes. We’re thinking of you always.
LikeLike
My dear friend. I have about 3 blogs I have not posted yet because of fear .. Could cause so much hurt, no understanding and too close to my heart. What you posted is a glimpse into them. My frustration, my tears, my loneliness and my intense anger. You are not alone. I wish we lived closer. I do understand but I know that it’s not the same as having those in your life and those you encounter to understand and not get impatient with you. Those moments of pure excitement that the day is good in our world and then the fall when you know it’s going to be a bad one. I wish everyday for my husband to stop the growing impatience he has with me and to show me empathy , not sympathy, that it’s ok if it takes me 5 minutes to get out just a few words or that I can’t remember yesterday or even an hour ago. It’s getting increasingly harder to communicate with others because they don’t know I have Alzheimer’s and I watch as they too become impatient or even thoughts and/or words come off that I’m a bit crazy or they treat me like a child. I’m still here. I’m still living. That’s what you need to tell yourself too. You are here still. You are a beautiful person and on those days when things are foggy, just do what you want even if it’s just staying home, curled up with music or not, but embrace the bad with the good. That’s when our minds and soul regenerate, heal and make us stronger for whatever is next!! Love you my friend. Your blog is spot on and truly expresses how I feel as well. 💗
LikeLiked by 1 person
I can understand the frustrations of moving forward but then slipping backwards. Hang in there the best you can and burn the doctors ear off with telling him everything you are experiencing and feeling. Hugs!
LikeLike
Gill, you continue to astound me — your honesty, your thoughtfulness, the way you approach all of this like a fighter. And most of all , revealing your vulnerability. I often try to imagine exactly what is going on in your head, just as I always tried to understand what was happening in Bo’s head, and then I am amazed.
LikeLike
Gill, your posts are a constant inspiration. You tell it as it is. If my lovely Mum could articulate her thoughts, I think she’d say many of the same things. Perhaps not the F-word (I don’t think I’ve ever heard her swear in 51 years) but then Alzheimer’s has changed her so maybe she would say that too!
Stay strong. You are so important to those of us with whom you share your life through your blog.
LikeLike
Have not been online much this year. This blog entry is terrifically good work ! Love you. Your friend, Tru
LikeLiked by 1 person
Thank you Tru, your opinion means so much to me 🙂
LikeLike