One of the most difficult situations, when caring for and/or about a person with dementia, is how to make sense of that person’s unflow of words, or else silence.
Anthony’s previously loud voice has, over time, diminished to a whisper (Parkinson’s disease) and his ability to put words together coherently has been affected by Dementia. So conversations (as in the ‘dementia dialogues’ I write about from time to time) are becoming more and more difficult. Sometimes I find myself trying to interpret sounds, rather than words, and sometimes I find myself trying desperately to read his silence.
I haven’t seen Anthony for five days because on the weekend Ming, Meg and I attended my nephew’s fantastic wedding down south. This was an eight-hour return trip so we stayed the night.
And now I have a cold, so my determination to get to the nursing home in the late afternoons has been thwarted despite good intentions. The guilt, and missing Anthony, is difficult to cope with but obviously I don’t want to spread germs in a nursing home environment.
One of the greatest comforts to me is the relationships formed with other bloggers and it has been wonderful to reconnect with them over the last few days. I was feeling guilty about not reading other people’s posts when they were reading mine but I now realise that blogging doesn’t need to be like that and that people are more than understanding of bouts of silence.
At my nephew’s wedding, I was, as we all were, filled with joy for the happy couple and their gorgeous little daughter. But, later in the evening, I experienced a moment of such intense misery that I could hardly breathe because of Anthony’s absence. My nephew and Ants have always had a wonderful connection, and I know that Anthony would have wanted to be there. Anyway, Ming got me through that moment and I went back to party mode -ha!
A few weeks ago, this was my short conversation with Anthony:
Me: Ants, is it okay if I write a book about you?
Anthony: No!
Me: But why not?
Anthony: Because I don’t exist.
I will never know what Anthony meant by this; was he being cryptic, humorous, philosophical? Was he being deliberately or accidentally poignant?
As Anthony becomes more silent, these transcribed ‘Dementia dialogues’ have become absolutely vital in terms of giving me conversational cues. Topics like the town he grew up in, our son, Ming, various nephews and nieces, farming, fences, cattle, the dairy …. all of these topics are interesting and important to Ants.
Eventually, Anthony will probably be totally silent so, from now on, I am going to record every single word he says.
jmgoyder 
My heart is beautiful for you, your journey and Ants and Ming. Thank you for being you.
Glad it helps to be in touch with other bloggers, it is certainly good for us to read what you write.
Hi Julie, I am praying for your family.
he sounds very much like some of the best philosophers, with their statements and questions about life.
Julie, I only know Anthony through your love. I think from what you have said he has given you the ability to interpret him the way you need to interpret him. I don’t know if I can express this as eloquently as he loves you, and you love him, but…. For all of your lives you seem to have had a wonderful ability to communicate and to enjoy one another, to support one another, and to give to each other.
You said you don’t know if he is being “cryptic, humorous, philosophical? Was he being deliberately or accidentally poignant?”. I suspect you will replay that brief conversation in your head numerous times. And you may come to a different conclusion each time on what he may have meant. I think it’s a gift that you think he could have meant it any of these ways. Because you know him to know he could have meant it all of these ways, and you have given his comment the truth of your relationship. If you had this conversation with him at ten different points in your life he could have said that exact statement, and each time, it could have been with any of these intentions.
I think he said what he knew you would understand, for each way he meant it. And that, I think, is the power of your love.
What an absolutely amazing comment – thank you so so so much for your wisdom here as I have been feeling very lost lately.
I can’t begin to even imagine what you are going through. I hope to send support and encouragement with words. I find great comfort, power and strength in them. You and Anthony are amazing. Your lives at this point, are proof positive of it.
It’s a great idea…. My mother went ‘silent’ very quickly, after she realized that what she was saying didn’t make sense. You could see her frustration when it didn’t come out right and she just stopped trying. It’s been quite the journey for you and Ming and Anthony… Diane
i think it is wonderful the way your love endures such hardship
Yes the silence and trying to interpret what that means can be difficult and we cherish the odd word they say that sounds like they understand and are responding to something we say
I think recording Ants is a fabulous idea. I don’t know what to make of his comments either. You don’t know if it’s Ants speaking, or the Dementia. One sided conversations are supremely difficult. I send you love and strength! You’re amazing, remember that!
The recording is important.
This post is quite the emotional roller coaster – but a capsulized version of what you go through every day. You’ve been strong, so keep being strong. Hang in there, and take care of yourself! Peace and strength to you, Julie.
I remember, when my mother-in-law began to show signs of not being able to enter a conversation, we learned to make a special effort to invite her in. She knew so much about nature and farming that those were great conversation starters for her.