There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.
Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.
I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!
It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.
I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.
It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?
Agog?
Will he know how much I miss him?
jmgoyder 
God bless your family Julie.
It is a very stressful time…. but we know we have to be there. I remember those question with my Mother when the first signs came that she couldn’t remember the right words to say and would just sigh and eventually just stopped trying, and then couldn’t at all…
When I sometimes would question God, about wondering so much about her feeling sad and very alone when we couldn’t be with her and not being able to communicate… He gave me a peace and said ‘she was never alone’…… . Thinking of you Julie Diane
Of course he will. Good luck with your article, no one can express the problems as you can.
some research was published here in the UK this week that states that death certificates are recording dementia as the no.1 cause of death overtaking heart disease. What is happening in our lives to bring this about? food, water, social conditions etc. wishing that you don’t feel quite so alone Julie
*HUGS* I love the humanity you bring to dementia Jules. It’s not just an intriguing disease with interesting facts and stats and observations. It has real live human beings in it; some who are frustrated that they can’t talk and others who love the ones who can’t talk. I hope you share your article here when it is finished Julie. ❤
Diana xo
Thanks Diana!
Oh, as much as you can guess his thoughts, I know there’s so much more you want to know. It’s interesting that “agog” also means anxious. It seems to me that all of this leads to anxiety. Your anticipatory grief continues to exhaust you, but your writing is inspirational and love surrounds you. So many people wish they could hug you right now – and I am one of them!
No matter how severe the dementia is in a person, I have always (and always will) believe that there is that part of them that is locked securely in place. I believe ANthony knows you love him, I believe he feels that love and devotion, and assuring him that you love him, he hears it. He knows it. I just believe this to be true.
Somewhere inside he will know, dementia is such a horrible condition that effects so many people.
It’s great the way you can put your grief and frustration into something good and useful like your books and articles. You are an inspiration to many! Hugs to you and yours.
Your article will prove very helpful to many people, Julie. Only those closest to Dementia patients can have any inkling of what it is like.
I also wonder what goes on in Anthony’s mind on those days when he can’t talk? Does he have a whole conversation wrapped up ready to share with you? Is he thinking clearly inside? Or is there a stillness (like meditation) when the mind has no mind? No thought?
Good luck with your article! You’ll bring a unique perspective to it, as well as SO much information.