LBDA

Book Excerpt: Mindfulness for Caregivers

This excerpt is from Caring for a Loved One with Dementia: A Mindfulness-Based Guide for Reducing Stress and Making the Best of Your Journey Together written by Marguerite Manteau-Rao

Compassion

Compassion goes hand in hand with loving-kindness. This time, instead of extending a loving intention, we get in touch with the suffering within the other person and we hold it with great gentleness. Compassion arises when we feel sorry with—not for—someone.

Four Steps
For dementia care partners, compassion can best be cultivated within the context of self-compassion, mindful attention, understanding of the disease, and last, skillful action.

Self-Compassion

Compassion can only take place after we have gotten in touch with our own suffering and held it with kind acceptance, as we have learned during self-compassion practice.
We can only recognize and be with what we have already befriended within. Anger, frustration, helplessness, grief, sadness, boredom, outrage, shame, fear, and many other challenging emotions are part of our shared experience with the person with dementia.

Attention

In order to feel the other person’s suffering, we need to pause long enough to notice his discomfort. Being too busy or overly focused on our own agenda are sure ways to sap any possibility of compassionate caring. Formal daily mindfulness practice is the best guarantee that we will naturally bring mindful attention to our care interactions.

Understanding

We need to be familiar with the symptoms and behaviors associated with the person’s dementia. Only then can we make the connection between our felt sense of the person’s suffering and the possible reasons behind their pain. For instance:
 

  • If we know our loved one’s dementia makes it hard for him to get his words out, we may feel compassion as opposed to jumping to impatience.
  • Not remembering from one minute to the next has got to be terrifying.
  • Being robbed of the ability to initiate any activity can make idle time feel stressful.
  • Agitation can be due to the person seeing scary things that nobody else sees.
  • Knowing our loved one is possessed by incontrollable urges helps us to not blame him.

This bringing together of the heart and mind makes it possible for us to take the next step.

Action

Compassion also has an active component. We feel the suffering and, if at all possible, we do something to help relieve it.

  • First we meet the person in her reality, and we join her. Second, we lend her our mind without making her feel like a lesser person.
  • We keep her safe, but not in such a way that she feels like a prisoner.
  • We give her choices, but not too many, so she doesn’t get overwhelmed.
  • We help structure her days, so that she doesn’t have to face too many blank moments.
  • We don’t mind the imaginary people that may be a part of her experience, but we seek medical help if her visions threaten her life or ours.
  • We don’t shame her for talking in ways that don’t make sense to us.

And each time, we bring mindfulness to the effect of each of our good deeds on our well-being. Compassion, like self-compassion and loving-kindness, is beneficial not just to the person in our care, but also to our own mental and physical health.
 
How to Be Compassionate
Compassion is not that big of a deal. It is done without any expectations, and it does not need any big declaration.

No Expectations

Compassion is best expressed without any expectation of outcomes. We need to understand that being the most compassionate caregiver we can be is no guarantee that the person in our care will feel any better, or that the person will thank us. If we keep bringing expectations to our compassionate encounters, we run the risk of compassion fatigue.
Through mindfulness, we can learn to pay attention to times when we start clinging to such ideas. Do you find yourself getting upset that your loved one’s health is slipping? Dementia is hard that way.

Compassion Is Simple

One day, while sitting with Tim, a participant at an adult day center, I was struck by how compassion lies in the small things of everyday interactions.

He is one of my favorite people. Lewy body dementia has stripped him of many of his abilities. Eating has become a chore, and this morning I watch him struggle with breakfast. He has been served stewed peaches, cut up very small, a fried egg, and some oatmeal. Many times, I notice Tim attempt to pick up bits of fruit with his spoon. Each time, an empty spoon reaches his mouth. I offer to help. He lets me, but I can tell this is not easy for him. Eventually, he grabs the whole egg with his bare hand and eats it, just like that. It is clear that Tim has moved on to finger food. We need to listen to him, and no longer make him feel inadequate. The aide brings him a big slice of watermelon. Tim stares at the thing and does not touch it. How about cutting it into more manageable pieces? That does the trick. Tim finishes every bit of his watermelon and moves on with gusto to the buttered toast. A whole breakfast down, easy.
Thanks to mindfulness practice, we can learn to view dementia care as an ongoing experiment in compassion. We learn to notice what happens within ourselves when we feel moved to extend compassion to the other person—or the opposite, when our heart closes or our mind doesn’t care and we ignore the call to lighten the other person’s suffering.

Eventually we become convinced of the goodness of compassion not just for the person in our care, but also for ourselves.
 
Reprinted with permission: New Harbinger Publications, Inc. copyright © 2016 Marguerite Manteau-Rao