wings and things

Dementia dilemmas: Silence

on February 20, 2017

Anthony is gradually losing his ability to speak clearly and coherently; his voice is soft and croaky and his sentences are sometimes incoherent and don’t make sense. I have to face the fact that the ‘dementia dialogues’ that I write from time to time will no longer be possible as Anthony’s vocal and cognitive skills decline.

Of course, not being able to write our funny little conversations isn’t at all significant in the face of Anthony’s impending silence. I have to admit that I am dreading the possibility that he may stop speaking altogether, but many people with dementia do.

I will miss his one-liners, his ‘I love you too’, and even his sometimes impossible-to-interpret statements like “That’s part of its beautifulness, Jules” when he was referring to something I didn’t understand a few weeks ago.

If this anticipated silence becomes a reality, how will he and I both cope? At the moment, I can easily mind-read and interpret what he is trying to say, so I can affirm that I understand, even if he is asking me to get the cows in, find the car, book the restaurant, give Ming a paddock, cook mornay, take him to Tasmania, visit his mother ….

Over the last weeks, sentences have diminished to single words and sometimes even the single words are unrecognisable as words; sometimes these are just faint sounds. When I can’t understand what he is trying to say, I will ask him to clear his throat and repeat what he just said. Usually my lack of understanding elicits a faint smile or a slight shaking of his head as if to say he has given up and then he will lapse into sleep again.

It is hard to reconcile this diminutive, quiet man with the loud, boisterous, vociferous presence he used to be. On the other hand, Anthony still has an amazing vitality, a spark; he still has a presence. He is popular with staff and he probably has more visitors than most. When a group of us happen to converge in his nursing home room, his delight is obvious but is not necessarily vocal.

Perhaps he will never lose his ability to speak entirely, but, just in case he does, I am preparing myself for conversations that only require a ‘yes’ or a ‘no’; a shaking or nodding of the head; a squeeze of the hand; eye contact; a hug; a kiss; tears and laughter….There are lots of ways to communicate that don’t depend on speech.

Nevertheless, I already find the sound of Anthony’s silent days incredibly challenging. It’s not tragic, or particularly depressing; it’s just the way it is and might be. Yesterday and tomorrow don’t really matter when it comes to today.

So, from now on – ever single today – I will treasure every single word that Anthony is able to utter. But I will also embrace silence.

[Knowing Ants, he will probably come out with an eloquent paragraph when I am least expecting it!]

12 responses to “Dementia dilemmas: Silence

  1. Judy says:

    Perhaps it is the unexpected – that makes this tragic. You can never really know what you are facing every day. Anticipatory grief is a cloud over you. You embrace him whether he is silent or not – because he is the most precious thing you have. It’s too soon to let go. It’s a love story, but you are suffering. I am sorry, Julie.

  2. ksbeth says:

    and if it moves to body language only, you will still know what he feels –

  3. What I love about you and Anthony, is your love. Your communication may change, but what you know from one another never will. When ever you are sitting with him, with your hand on his while you are watching his show, or when he is worried about the cows, or when he is nodding off, you’re speaking to one another. ❤

  4. Ann Koplow says:

    Love can be expressed in silence, Julie. ❤

  5. I am hoping for a paragraph–but even a warm nod will do I suspect.

  6. tootlepedal says:

    It is very upsetting when you can’t understand what someone is saying to you. I hope that you get many lucid moments to enjoy.

  7. words are 17% of communication. I love that you know there are many ways to communicate. Perhaps you and Ants can create a cheat sheet of sorts for later. Hugs and much love. ❤
    Diana xo

  8. Silence can be tough but I still just talked to my mother, as I imagine you will with Anthony. One never knows what the person can understand… Silence can be a time of a reflection of days gone by… Keep well and take care ….Diane

  9. It is terrible when they lose the ability to speak and oh so sad

  10. lensgirl53 says:

    It is so very hard to watch the slow disappearance of our loved ones who have dementia. I think you handle your situation with grace and humor. I also think Anthony’s keen wit shines through in those unexpected moments…like you are expecting. God bless you and Anthony. I look forward to your posts. I feel as if I know you and your lovely family.

  11. It must be difficult for you and you are a treasure that you always find those moments of joy, and this time in treasuring his every single word.

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