jmgoyder

wings and things

Dementia dilemmas: Silence

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!]

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Dementia dialogues 3

Okay so this post concludes the little mini-series about what I have learned over the last several weeks of working in the dementia house.

Silence is golden!

To begin with, I would take various of the ten women for wheelchair walks around the gardens and through the facility, bombarding them with my chatter and questions, pointing to flowers or pictures on the walls, or just telling anecdotes or jokes that I hoped would elicit conversations.

In hindsight, that was idiotic in many ways. Can you imagine being in a wheelchair, travelling through beautiful gardens, observing the various flowers, breathing in the fresh air, catching a glimpse of the ocean, with the person pushing your wheelchair, whose big shadow you can see on the footpath, chattering AT you, asking you questions that frighten you because you don’t know the answers, disturbing the peace of being outside?

Weeks ago, during one of these walks, I asked D how many children she had and she paused, nervously, then said, “Two or three I think.” She was embarrassed not to know the answer. Then, with S, the same question elicited sobs of “Where is my family?”

So now, unless the person in the wheelchair initiates a conversation, I just shut up and push the wheelchair and, in this way, we are both able to listen to, and appreciate, the silence of the fresh air, the smell of the ocean, the sight of the roses and other flowers.

Silence is golden!

Once back in the dementia house, there is plenty of opportunity to chat, joke, play card games, do jigsaws etc. so I am not quite sure why I felt it so necessary to crowd the quiet fresh air with my clumsy hundreds of unnecessary words. The wheelchair walks will now be done in silence.

The other thing I have learned through working in the dementia house is that touch can be a way of communicating that doesn’t rely on words or even facial expressions. A hug, kiss, hand hold, given to you by a person with dementia, is worth a zillion words – and to respond to that gesture is worth a zillion more. On the other hand, I have also learned that some people flinch at being touched, especially people who are silent, so this is something to be respected; after all, every single person with dementia is an individual. Some people don’t like to be hugged.

I am not going to write about this for awhile because I still feel that I am on P-plates, learning via my mistakes, learning how to appreciate and respect and ‘read’ silence, and learning about individual personalities.

Even though Anthony also has dementia caused by his Parkinson’s disease, I always test my ideas out with him just the way I used to do when I was writing university essays and, later, lectures. With the simple difference between a nod or a shake of his head, he continues to be my mentor despite the fact that his own ability to speak coherently is faltering fast. So learning how to read silence is a necessity.

Silence is golden!

Respect for silence is gold.

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Dementia dialogues 2

My last post raises the question “but how can you listen to someone with dementia who is either incoherent or totally silent?”

There are two particularly talkative women in the dementia house where I work. One of them fluctuates between English and her first language but, regardless of what language she is speaking, her monologues are extremely difficult to understand.

The other woman, who is bedridden now, is so talkative that it is difficult to give her food or drinks because her monologue can be unceasing, but, interestingly, when she loses the thread of what she is saying, she hums a tune. Here is an example:

“And I said to him, said to him, you go go go to the shop and … humming … And there is, is, is a … humming … (takes a mouthful of food) … Oh that’s good, and he said to me that it’s, it’s, it’s a one, two, two, two … humming … What on earth are you do-doing? It’s a very nice dress … humming … chuckling … Oh no, damn … chuckling (takes a mouthful of food) … You shouldn’t, shouldn’t do that … humming … How dare you! I’ll have to, have to do, do, do that … chuckling ….” And on and on this goes.

In my ‘shut up and listen’ mode there are all sorts of nonverbal ways of validating that what these two women are saying is important. I can nod, smile, laugh, hug, hold hands, shake my head and I can pretend to understand. And the ‘shut up and listen’ mode doesn’t mean you can’t say anything at all of course; it just means that you give the person with dementia the floor so to speak. I’ve found recently that one-word responses on my part are much more effective than attempts at coherent conversations. Exclamatory words seem to be particularly successful in eliciting smiles, laughter, pleasure. “Yes!” and “What?” and “Really?” and “Amazing!” and “Thankyou!” and “Please!” – accompanied always with suitable facial expressions – can be a gift to those with dementia who are talkative.

But what about those people for whom speech has become difficult (e.g. Anthony) or even non-existent? This is very difficult because, unless you are psychic, you cannot possibly know what that person might have said/wants to say/feels like saying but can’t. How do you listen to utter silence?

To be continued when I figure that last question out!

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Silence

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

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Silence

Silence is not always golden – it can be a lead, dead weight.

At the nursing lodge, I am learning, with restless determination, how to sit in silence with Ants who is beginning to forget how to talk, to form sentences/words.

So what do I do? I talk frenetically, I throw myself around his room, recharge his phone, make sure his airconditioner is onto heat, turn the TV onto ABC, put the new heatpads into his slippers, hug and kiss him. Sometimes I am there for a few hours, sometimes just a few minutes; if I can’t get into town, I eventually get him on the phone.

His silence on the phone, and in person, is sometimes deafening.

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