What was the first thing that connected you to your loved one? What was the feeling you felt?
I ask this because I believe that as people change with the onset and progression of dementia, it is the essence of connection that we have to re-engage with.
If you close your eyes now, just for a moment – can you picture a time when you were with your loved one and felt buoyed up by the love and happiness you felt? Can you connect to that feeling now?
I often think about how we create our identities as we grow up. We do our best to become the person we want to be, so that we can have experiences and meet people who align with that life and person. This often happens as joint creation - in families or as couples, creating the life you want to live together. These relationships act like glue; helping to hold our sense of self together. But when someone we love begins to develop dementia, it can feel as though that glue is losing its stick.
Two people who were tightly connected start to take different paths when dementia enters the picture. Different things become important. One person remains in the world of the head, while the other moves to a space that coheres less with everyday expectations and connects more to moment by moment emotions. Plans they made together now seem impossible to fulfill and the individual without dementia loses their imagined future too.
No wonder so many people find themselves hating this disease.
Why people with dementia stop talking
Many individuals I have worked with who are experiencing dementia feel this way too. Their language can often be violent, describing theft and frustration at what is happening – "it's robbed me;" "I'm attacked;" "catch tongue." Words can hint at defeat and failure – "It's taking my breath away this stupidity;" "I'm nothing;" "ridiculous." People mourning the loss of their own change.
Some with dementia cease speaking altogether—not because they cannot talk, but because they are fearful of their voice, of saying the wrong thing and upsetting others. It's the beginning of a descent into downward spiral; as people with cognitive troubles lose self-esteem they begin to appear more and more like the stereotype of a person with dementia.
That's why it's important to keep loved ones talking.
It is easy for us to hate the dementia our loved one has – the media constantly shows us how negative this disease is, how it only takes things away and how it is a burden. And personally I believe there's sometimes a small part of us that blames a loved one for getting the disease—just a small part.
But what if we give up fighting it; what if we give up seeing what dementia is taking away? What if the experience wasn't labelled as separate but seen as one of many avenues people might have to go down as they age naturally?
Learning to listen on their level
Constant thoughts can inhibit how we communicate. Just like professional caregivers, family caregivers may become preoccupied and overwhelmed with all the tasks they need to do, when all a person with dementia really needs is to be able to connect with those they love.
It can undoubtedly be hard for a caregiver to slow down and clear their mind to enable quality communication with who their loved one is now. So ask yourself: What would enable me to just BE with my loved one, just for a few moments each day?
Like most things in life, quality is more important than quality when trying to communicate and connect. We all know how one bad encounter with another person can ruin a day, and just a moment of connection can lift our spirits. Why would it be different for our loved one?
A woman with dementia once told me something about working with people who have dementia: "You listen on a different level; ‘Cause it happens on a different level." The work we do at Living Words allows us to be free to be with people, often sitting in silence, allowing space for words to appear while we sit together in the shared experience.
Eye contact is important for this; yet it may be hardest to lock gazes with those we know best. Is this true for you?
When we hold eye contact and are physically close to each other we can connect, being in moment together—no judgement. Rather than finishing your loved one's sentences or trying to steer the conversation, try repeating their words back to them as a question. Don't worry if sentences aren't finished – you're communicating on a different level. Focus instead on the quality of your connection, not the facts or complete sentences.
Often people (regardless of whether they have dementia) can become "challenging" when we try to control them - try to tell them that they are wrong, what to think or that they have to do something they don't want to do. I know I feel this way often.
Love, and other tips for communication
Bad communication happens—sometimes seemingly arising from nowhere. You might be thinking about something else, and thus aren't focused on communicating clearly and openly. If you notice this might have been the case, you may want to try leaving the room. Give yourself a moment and re-enter, starting again by communicating clearly and openly.
But don't forget yourself in all this. Are you giving yourself love too; being kind and non-judgmental about your performance as a caregiver? If not, how might you go about treating yourself with more understanding?
I recommend (if you don't already), closing your eyes and taking five deep, slow breaths. Focus on breathing in to your stomach. Just taking a moment to yourself will help connect you to your emotions, your depth of being.
Pick up a notebook and pen and write without thinking, write for just one minute, keeping the pen moving the whole time. Begin to get your living words down on paper, your words from the depths of you. Let them come; don't judge them. They might be pained or angry or seem like nothing at all – whatever they are, let them come.
I recently worked with a women who lives in a nursing home and is unable to walk or feed or clothe herself. She summed up how people with dementia can feel as they move from matters of the head to matters of the heart: "It's all there is, all we got – love."
Two such strong words: "love" and "hate." The emotions that go with each word can open us up or close us down.
A person experiencing dementia might display love and hate to their caregiver within the same few moments. But it is up to those caregivers to love themselves and accept their loved ones and to try to communicate clearly in order to feel and give love that nourishes.
You can do it – you are already doing amazingly well.
As for the last words, I'll leave those to a woman I met last year, named Glenda:
The Whole Loving Word
Give me some of the words then!
The line, the whole:
Loving – There is loving, that is loving
This word here is loving, loving this woman
L.O.V.I.N.G – that's what I said
Love. Love. Loving word.
Have to think but I just can't -
It's only loving when it's far out
‘cause it's stretching -
Loving all the time
You loving all the time around me
I want it full, keep it with you. Love…
(This poem is copyrighted and may not be reproduced without permission from Susanna Howard.)