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. 

Being With Speechlessness (Aphasia)

On Monday, my mother was singing to me her favorite tune La Java Bleue over the phone. On Tuesday, she had been robbed of her ability to speak by a stroke. Aphasia, the medical term to describe what happened to my mother, comes from the ancient Greek term for 'speechlessness'. It is associated with different types of neurological disorders, and comes in several forms. My mother suffers from expressive (non fluent) aphasia, meaning she knows what she wants to say, but is unable to get the words out. Such a sudden loss is traumatic and I have had to rely on both my practice and field knowledge to be as supportive as I could for my mother. I have also had to deal with my own grief of the mother I knew who sang and spoke to me. Yet another loss down the path of Alzheimer's and very old age . . . 

Most important is to acknowledge directly to the person, what has happened, and the likely emotions associated with the communication challenges that they are experiencing. When complicated with memory loss, the person may not understand what is happening to them, and may need to be reminded. With my mother, I have been telling her that she had a stroke, and is experiencing a temporary loss of speech. I want to keep her heart in a hopeful place, and there is indeed the possibility that she may respond to speech therapy.  I empathize with the extreme frustration she shows in her facial expressions whenever she is trying to talk, and I apologize for the times when I may not understand her. This is a step caregivers often forget in their communications with aphasic persons, particularly when the aphasia has been present for a long time. I also rely on the bank of previous spoken interactions with my mother, and all the topics I know she enjoyed then and is still likely to enjoy. Next time I visit, I may also try to see if I can encourage her to communicate through art, although that door may be closed given the state of her advanced dementia. For a person suffering from strict non fluent aphasia, and with limited to moderate or no dementia, writing and art making would be two logical outlets for self-expression. Last, is falling back on two most profound forms of communication, touch, and seeing. Gazing into my mother's eyes, I shared some of the most tender and loving moments we ever had together. It is quite something to realize that it took that much, for the two of us to get there. 

Many times during the past three weeks, I have rested on the foundation of my practice. Reading Ayya Khema, stopping often to connect with the breath, sitting every morning without fail, sharing in this blog with all my noble friends, and contemplating the teachings, particularly on suffering,  impermanence, not self, and the five remembrances. I have also been reflecting on my experiences of noble silence during retreats, and how such practice can help one prepare for the possibility of speechlessness both in oneself, and in others. 

Minding the Guilt

Guilt is an interesting emotion with many nuances worth exploring. 

Guilt came up recently in a caregiver support group I help facilitate. One woman felt guilty for not being there for her husband 100 percent of the time. I explained that we often set ourself up with unrealistic expectations of ourselves, 'should-s' that demand from us more than we can humanly give. And we end up with this yucky feeling in our stomach, a mixture of self-hate, confusion, and powerlessness. This is false guilt, a toxic emotion to be disposed of promptly as soon as we can see it for what it is.

Guilt can also be of the rightful kind. There are a few major decisions I have made in the past that have come back to haunt me, both in terms  of negative outer consequences, and also the pain from a tormented heart. There is no escaping such guilt. I have found it needs to be endured with great tenderness, and also the determination to learn from it. Rather than lingering in biting remorse, better yet is to mine the wisdom buried in one's earlier mistakes. Whenever guilt raises its ugly head, I meet it like this:

First, I feel the guilt completely, including the slew of other, all very unpleasant mind states attached, the sadness, the remorse, the regret, . . . I feel them all. Guilt is a blow to the ego. It crushes one's inflated view of one self, and as such, can be seen as a very good thing. Guilt opens one's heart.

Second, I move on to a state of self-compassion. I revisit what happened, and the circumstances that led to the original action. A state of limited consciousness and heart not being opened, for sure. I forgive myself. 

Third, I step out of myself, and I feel the pain of those I unwittingly hurt. I use that intimate knowledge to build up the necessary resolve to not repeat such hurtful acts. Part of that resolve is a renewed commitment to mindfulness and loving kindness practice, the two best safeguard I know against negative karma. 

Fourth, I take a forward thinking stance. The past is the past that cannot be undone. All I can change is how I think, feel, and act in this present moment. The opportunity to love is right now. Today is the first day of my remaining life.

How do you deal with guilt?

Launching Mindfulness-Based Dementia Care at UCSF

'Mindfulness' and 'dementia', two words to do with mind:

mindfulness

dementia, from Latin word demens, which means 'without mind'

Mindfulness and dementia are not just connected in words. Mindfulness also happens to be a key element of successful dementia care, working on two fronts: 1) to reduce caregiver's stress, 2) to help the caregiver be present for the person in their care. Facts gathered by the Alzheimer's Association show the extraordinary stress suffered by most family caregivers:

• 61 percent of dementia caregivers suffer from high emotional stress.

• 33 percent report symptoms of depression.

• 43 percent experience high physical stress.

• 75 percent are concerned about maintaining their health.

• Dementia caregivers are more likely to have adverse physiological changes such as high levels of stress hormones, reduced immune function, increased hypertension, coronary heart disease.

• In the last year of their loved one's life, 59 percent feel they are on duty 24 hours a day.

This goes on for an average of 4 to 8 years post-diagnosis. It is no wonder 72 percent of caregivers express relief after their loved ones die. For professional caregivers and health care providers, the stress is also intense and can lead to burnout. 

Until recently, most mindfulness-based approach to dementia care referred to Mindfulness-Based Stress Reduction for dementia caregivers. Having observed numerous times the unique challenges as well as mindfulness practice opportunities in dementia care, I realized the need for a mindfulness-based program specially tailored to dementia caregiving. Hence began the Presence Care Project, a non-profit initiative aimed at promoting a new form of dementia care training. In the Presence Care approach,  mindfulness, informed by experiential understanding of the person with dementia, becomes the foundation upon which a caregiver can rest, moment-to-moment, day after day, during the long journey of dementia. UCSF OSHER Center for Integrative Medicine has now taken on this new approach and recently launched its new Mindfulness-Based Dementia Care (MBDC) program.

MBDC builds upon the now very well proven model of Mindfulness-Based Stress Reduction (MBSR),  and combines solo mindfulness practices, interactive mindful care practices, lectures, and group sharing. Throughout, aspects of mindfulness practice and dementia care are interwoven. The emphasis is on practice during and between classes. The end goal is for participants to experience a radical shift in attitude from mostly doing and reacting, to being skillfully present for themselves and the person in their care. MBDC is appropriate for the whole range of persons involved in dementia care: family and friend caregivers, professional caregivers, elder care professionals, nurses, doctors, and other health care providers. 

MBDC rests on this central premise: mindfulness, that which helps dementia caregivers reduce their stress, is also what can help them provide the best care for the person with dementia. 

The first series of 8-week classes is starting next week and will be taught by myself and Dr. Kevin Barrows, physician and director of mindfulness programs at the OSHER Center.