5 Contemplations For Dementia Care Partners

Sooner or later, during one's mindful journey, one becomes faced with a wall. One has a choice then. To keep bumping one's head against the inevitable, or to stop and contemplate the very nature of the wall itself. The wall is about the impermanence of life, and our need to face that truth. Many times, whenever grief wells up inside, as it did earlier today, I call upon the 5 Remembrances:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health.

I cannot escape having ill health.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them. 

I inherit the nature of my actions in body, speech and mind.

My actions are the ground on which I stand.

Strangely enough, I find great comfort in telling myself those lines. It is as if the telling is paving the way for acceptance of what is to come, or what has already happened.  During my work with those in the early stage of cognitive impairment and also with dementia caregivers, I have learned to tailor the 5 Remembrances to more specifically address the unique challenges of the dementia journey. It goes like this:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health of body and/or mind.

I cannot escape having ill health of either body and/or mind.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them, in either body or mind.

There is no avoiding making mistakes.

I am doing the best I can and I hold myself with compassion.

May you contemplate those words often. And may you find comfort in them. 

Mindful Presence to Ease the Dementia Journey

(cross-post from Huffington Post)

Imagine a marathon you did not sign up for, and yet, you are told you have to run the race until the end. To add to the challenge, you are to carry a heavy load on your shoulders, and the load will get heavier and heavier as the race goes on. This is what the dementia journey is like for most family caregivers... Keeping with the marathon metaphor, what is needed is a way for caregivers to develop the strength that will be required of them over the long run. The Presence Care program is a new, integrative approach that combines mindfulness and compassion practices with understanding of the dementia experience. Its goals are to ease care burden and stress, and to help foster greater well-being for both caregivers and the persons in their care. It goes like this:

1. Understand dementia.

The more we can learn about the disease, the better equipped we are to understand what the person needs and why they are behaving in certain ways. Dementia affects different parts of the brain, each responsible for different cognitive domains such as memory, language, behavior, executive function, or movement. Not all dementias affect the same domains, and we need to know which ones are impacted and what that means in terms of the person's interactions with us. For instance someone struggling with executive function will have trouble initiating tasks and will be dependent on others to get engaged into activities. We also need to guard from our tendency to position the person with dementia as less able than they really are. Many abilities are preserved throughout dementia. In many cases, emotional intelligence is even heightened.

2. Practice mindfulness.

Using Jon Kabat-Zinn's definition, mindfulness is being fully aware of the present moment, on purpose, and without judgment. The validity of mindfulness as a powerful stress-reduction tool is no longer in question. That benefit alone makes it worthwhile for stressed out dementia caregivers to undertake mindfulness practice. The other, equally important reason has to do with the way in which mindful attention allows us to notice what is happening moment to moment, that may impact the person's experience. What do we bring into the situation? What do we hear? What do we see? What is the person telling us with her body language? Armed with that awareness, we then have a chance to act in a way that is most beneficial to the person. Of course, remembering to be mindful does not come naturally. We need to train our mind to come back to the present moment. This is done by setting time aside to practice every day. Even only five minutes of sitting and paying attention to the breath can make a big difference.

3. Respond with compassion.

Compassionate care is a natural outcome of mindfulness practice. In the mindful noticing of stress for the other person lies the seed for our compassionate response. I worked once with an elder man with Parkinson's who was moved to tears once his wife learned to model her steps after his. It took them both a good ten minutes to walk the twenty feet from my office to their car. Mindful "pacing with" is a wonderful practice that helps us shift from trying to get somewhere fast to becoming fully present for ourselves and the other person, while walking together. Such walking is an example of compassionate response.

I would like to end with a note on self-compassion. With greater awareness and deeper understanding of the person's needs often comes the painful realization of our own inadequacies, and of times before when we may have unintentionally hurt the person in our care. We address this by giving ourselves frequent self-compassion breaks, a practice developed by Kristin Neff. First, we recognize the suffering in our heart: "This is painful." Then we see that suffering as a part of the human condition: "We all struggle in our lives." Third, we extend kindness to ourselves: "May I forgive myself." The dementia care journey is an ongoing adult education in mindfulness and love. If we learn to view every one of our dementia care experiences as just that, we will do ourselves a great service, and we will be more free to give the person what they need.

Preventing Burnout With True Compassion

@mihaela_V on Twitter asked 'Any tips re: compassion w/o taking on others' suffering?' That's a great question, and one I can answer based on my limited experience as both a mental health professional, and a practitioner of mindfulness. 

Early on in my career, when I worked as a psychiatric social worker, I remember coming home every day from the hospital feeling drained and with little left to give to myself and my family members. The explanation was simple. I was taking on the suffering of those I was meant to help. And the remedy, as suggested by my supervisor, was clear. I needed to strengthen boundaries between me and the patients. Whenever faced with difficult material, I learned to summon images of door being shut, and fences going up. It helped some, but not really. 

The reason is, I did not know what true compassion was.

Fast forward thirty years, and my experience is so different now . . . Mindfulness has enabled me to   bring compassion first to myself, and second to others in my care. And in the process, I have discovered the joy of serving without feeling burdened by it.

UC Berkeley Center for Greater Good has one of the best definitions of compassion:

Compassion literally means “to suffer together.” Among emotion researchers, it is defined as the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering.

To Leigh Brasington, I owe this clear articulation of what compassion is, and what it is not, and what happens when it is not practiced correctly. Here are my notes from last year retreat with Leigh:

The far enemy of compassion is cruelty. Its near enemy is pity. We risk burnout when we get attached to results, and we insist on relieving the other person's suffering.

Practically, this has meant approaching the other person's suffering like this:

I meet you and I sit with you. I allow myself to feel all of the suffering in this moment, yours and mine. I discern what is yours and what is mine, and what are my reactions to yours and my suffering. And I pay particular attention to any tightness in my mind or body, for it is always a sign unnecessary clinging, which we know is the real troublemaker. What am I wanting that is not possible? What am I pushing away that cannot be done away with? Sitting with her who is sharing her great mental suffering with me, can I let myself feel her anguish, her depression, her hopelessness? Can I stay with the extreme unpleasantness of it all? No need to do anything, other than 'seeing' the whole package, and finding the ebbs and flows of breath in between. Same way I would deal with my own suffering. In the joining and the shared acknowledgment of the suffering lies the possibility of healing. And without the rub from ego-induced clinging, the other's suffering does not stick but leaves instead joy in its trail. Joy from heart open fully, not defended. 

May this be helpful to you whose heart wants to open, and bring relief to the other who is hurting.