Caregiving requires a brave heart

Caregiving requires a brave heart. Nonviolent Communication, as a discipline of the heart, is a process—not a technique, not a method, but a process—that can help. Because in Nonviolent Communication, we take responsibility for our own well-being. And we do that by keeping an awareness of our needs and trusting in our heart. Some caregivers think they have to give up their feelings and needs in order to manage their care responsibilities. Some discover that providing care without a heart is soul-destroying yet giving into emotional ups and downs makes things even harder. By expanding our heart beyond passing emotions we may see things more clearly and have a better idea how to solve problems. In other words, we build our ability to see clearly, feel our feelings, sense our needs, and request strategies to meet those needs.

Commitment to clear Observation, felt Feeling, sensed Need, and fulfilling Strategy constitutes the Nonviolent Communication process.

As time goes on and dementia develops, someone with dementia gradually becomes inseparable from their caregiver, yet both remain distinct individuals. When I acknowledge my needs as my own, I am in a much better position to connect with the other person.

Understanding in caregiving

Seeing someone through a fence of judgment disconnects us. If I see a ‘loser’, I am allowing a complicated web of meanings (that is, evaluations, judgements, and diagnoses) to obscure the space between me and the other person. If I start to tell the person all the things they should be doing with their life, the net gets thicker. It is not only that my vision of the other person gets densely obscured but equally they can’t see me through it either. They can’t see the good intentions that motivate me to say all these things in the first place.

If I see a ‘foolish old man’, I don’t see the person in front of me, I see my judgments. And this net of judgments has the amazing ability to be self-fulfilling. The more I see a stubborn old man, the more there is a stubborn old man to be seen. Everything he does will seem to confirm his stubbornness and his old, impaired  abilities.

If we learn how to relate to one another without judgment, we can see each other more clearly. Seeing each other clearly is connecting. Observing the sanity of our hearts as expressed in our needs and values is the most direct, unmediated way of understanding another person. It’s like replacing a painting of a landscape with an open window. You see the real thing rather than its representation.

Replacing reasoning with connection

Those with dementia sometimes seem to live in a world from decades ago. They may perceive objects or voices that aren’t visible or audible to us, or converse with people we know are long dead. To those of us without dementia, they may seem to have lost touch with reality. Hence some approaches to dementia care emphasize “reorienting them to reality.” For example, correcting someone with dementia by saying, There is no alligator in the room, so don’t be scared. Or, Now calm down, your father died fifty years ago. He is certainly not shouting at you. These attempts at “reorienting to reality” often feed a person facts from our own sensible world, and they manipulate feelings through commands such as Don’t worry, Calm down, or There’s no reason to cry. As a result we may lose this person, disconnect from them and label as ‘unreasonable’ or ‘irrational’. While for them their worry, upset or fear are a living reality. A reality we could relate to simply because each one of us is worried or scared at times.

Perhaps not everyone sees alligators in the living-room, nor argues with their dead relative. But we all have a need for safety, fairness and peace. By replacing the ability to reason about facts with the ability to connect to the universal human needs, we meet one another, despite dementia.

OUR DEMENTIA approach

I first heard about Danuta Lipinska from John Killick when I attended his Poetry and Dementia workshop in Ty Newydd, a centre for writers in North Wales, back in 2016. Danuta is an award-winning specialist in aging and dementia care. When I read her book I realised that we have in common not only similar interests but also lean towards the same approach to dementia care. Just two words can sum up this approach: OUR DEMENTIA. Where we empathise that it matters less who has got the illness. It matters more who shares your life with dementia. Who cares for or about the person with dementia is as important to dementia care as the patient themselves.

And this is how Danuta commented on my book:

“This new and fresh perspective on communication and connection allows us both, caregiver and cared for, to be on the same side. The book celebrates OUR dementia relationship – a reminder of our shared humanity.

It is a delight to read about the reciprocity of relationship allowing two people to have the opportunity to engage with one another in openness and in the joyful moment of connection.

The human need for ‘self-empathy’ is explored and we find ways to honour our ‘dementia relationship’ by caring for ourselves; something that many caregivers find difficult to talk about, and almost impossible to do. Here is a beginning.

Written in a clear and confident style with honesty, humility, and empathy based upon her own relationships with people living with dementia, the narrative is often poignant, sometimes funny, and always respectful even when communication is trick and connection seems elusive. The power of this book is in it’s honest simplicity and the heartfelt courage to share joint experiences and learning.”

More about Danuta Lipinska and her work: http://danutalipinska.com/

How to recognise dementia in someone?

Dementia is an invisible sort of illness; it does not reveal itself through bandages, wheelchairs, or walking aids. It starts slowly. It is subtle. It is a different experience for each person it affects. We don’t necessarily know if someone has dementia by looking at them. That’s how invisible dementia is. 

Dementia can affect thinking and memory in a range of ways. It can affect day-to-day, recent memory. It can cause difficulties with planning, concentrating, or organizing. It can affect use of language. It can affect visuospatial skills. It can affect orientation to time or place.

For more detailed explanation of symptoms follow Alzheimer’s Society advice: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis

Sometimes dementia may even cause visual hallucinations or delusions. Dementia can lead to changes in mood, but dementia does not cause disconnection. People living with it can still, always, form meaningful relationships with other people. Behind all the symptoms there is still the person we care about. We can still communicate to connect to them when they seem to be disappearing behind their dementia. So the real question is: How to recognise the person you care about in their dementia?

“Practical and humane”

Dr Tim Beanland, who represents Alzheimer’s Society in United Kingdom, has read Dementia Together book over the summer 2019. And here are his impressions on what the book offers:

“Emphasises how authentic relationships are at the heart of supporting

someone with dementia. Makes a compelling case for how—with a curious

and empathic approach to communicating—two-way connections can be

enriched over time. Practical and humane, this book is recommended for

anyone caring for or about a person with dementia.”

—TIM BEANLAND, PhD, Head of Knowledge, Alzheimer’s Society