Alice looked round her in great surprise. `Why, I do believe we’ve been under this tree the whole time! Everything’s just as it was!’
`Of course it is,’ said the Queen, `what would you have it?’
`Well, in our country,’ said Alice, still panting a little, `you’d generally get to somewhere else — if you ran very fast for a long time, as we’ve been doing.’
`A slow sort of country!’ said the Queen. `Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!’
Through the Looking Glass – Lewis Carroll
People with dementia have something to say and they do say it. Unfortunately, their words invariably conceal who they are and what they want. Hence an objective of person-centred work is to decipher their words to unearth their concealed messages and in the process reveal that the person is not lost but merely more difficult to see behind the remnants of their intellectual powers.
However trying to understand the meaning of what a person with dementia is saying requires a gentle touch for we should never trample on a person’s communications and impose our interpretation on their words. We need to be patient, listen well and pick up the clues that may guide us to an understanding of what is being said.
In the words of Dr. Dan Siegel “We come into the world wired to make connections with one another, and the subsequent neural shaping of our brain, the very foundation of our sense of self, is built upon these intimate exchanges.”
Creating and being in relationships is a crucial part of our development, our well being and our identity, our sense of self. We relate to each other by communicating with one another and we all can distinguish the difference between simply transferring information and communicating. When we feel seen, listened to, spoken to according to who we are, it is then that we feel another communicates with us – connects with us, meet us and then a dialogue is possible; when there is a common meeting space with others to express ourselves.
Ever since Alzheimer showed up in our lives to stay, my husband and I have become more affectionate with one another. Now he shows me every day that he loves me as I show him, and not only by taking care of him daily. Until not long ago, when we would sit side by side in the sofa alone, he would look deep into my eyes and with that Andalusian accent of his and that smile of his that has always dazzled me, he would say: “you are the most wonderful woman in the world.”
These days when words don’t always come out, we simply kiss, we stare into each other’s eyes, we hold each other’s faces; we speak with gestures and smiles. During those moments, I feel truly fulfilled.
Although taking care of him throughout these years has not always been easy, I feel I receive much more than I give. He makes me feel secure.
Trinidad Pinto, España
This afternoon, I was with my father at the residence where he’s been for the last three months. He has dementia that is compatible with Alzheimer’s. It was a special afternoon. Now that I’m writing these words, I feel truly moved.
The relationship I have with my father has always been very powerful, and there was even a time when there was great misunderstanding between us. I’ve always known of the love he has for me, and the love I have for him.
“Here is my secret. It’s quite simple: One sees clearly only with the heart. Anything essential is invisible to the eyes.”
Communication ended up being the most difficult part. I have to admit that it was really difficult for me to put myself in her place and internalize that, as the disease progressed, she moved backwards in terms of knowledge, language and behaviour. I never did understand that what she could do one day, with total normalcy, she wouldn’t know how to do the next. I rebelled a few times, and I even yelled at her, thinking that if I said something in a louder voice, she’d understand me better, when nothing could be further from the truth – the impact was actually the opposite.
Dementia is a loss of brain function that affects memory, thinking, language, judgment, and behavior. I work in home health as a physical therapist and occasionally have patients with some form of dementia that impacts their independent living. The role of rehabilitation with these patients can be very challenging depending on the stage of the disease process. Summer of 2011, I had a series of patients with the diagnosis of dementia that opened my eyes in a way the mind has difficulty explaining and goes beyond the standards of belief today. I experienced an awareness of connection of all of life to the universe. Moreover, as I work with the body I am beginning to see and experience a great relationship to the eternal soul. Continue reading
I am 63, my mother is 90. I am still working. She lives near me in a retirement home with extra help. I see her everyday and see myself as her general coordinator rather than her caretaker.
Before I can feel connected to my mom I must make space for it.
This is after I have had some time to process my own grief and come to an acceptance of what is, her loss of her former self, and drop my own agendas, both emotional and domestic. This is only one sentence, but it is hard work. To feel connected, I must sit with her, and let everything go: the laundry, the grocery list, especially my own impatience or fatigue.