It can be very challenging to care for a person who has dementia. Patience is key. They may need intense caregiving and as the disease progresses there is ongoing loss, particularly a loss of identity. It can be frustrating to care for someone who no longer knows you and the life history that you shared together. At the same time, it’s important to honor your loved one, to honor those you are caring for, and to love more deeply and more profoundly!
The person may be cognitively unable to communicate and dependent on you for activities of daily living. An ordinary conversation might be quite difficult when the person you are caring for cannot remember what was said. He or she may even be hostile or angry, and all of this definitely tests your patience. The paramita of patience is the antidote to our anger and to aggression.
It’s good to start small, to be good-natured feeding someone, each mouthful, each spoonful, slowly feeding, practicing tolerance, practicing loving-kindness, feeling the act of caring and nurturing rather than the frustration and slowness of the act of feeding and eating. Practice being kind—hold your temper—don’t expect anything, then you won’t be impatient. See if you are able to remain centered and accept things in a relaxed way. Practice all-pervading awareness and clarity; know the situation in the very moment.
Every Act Is a Blessing
Treat every act as a blessing: consider each act of caring with patience. It takes a calm approach to see feeding or dressing or giving medications as a blessing, and not proceed with mechanical, task-oriented care. This practicing patience paramita can be considered as a part of the approach of person-centered care, where the person that you are caring for is at the center—their needs, their preferences become the axis of care, and as caregivers, it takes mindfulness to “place” this individual at the center of care. Whether you are a family member or health care provider, a calmness is required.
Meditation practice can develop patience as well as awareness and peace, and you can begin to bring this wisdom in your caring with compassion, and with kindness. Through meditation we learn to work with our own emotions, and we become more willing to bear discomfort. A meditation practice can improve your psychological well-being, reduce stress, and cultivate self-compassion.
Sometimes patience is called forbearance, being able to forbear the confusion and frustration in caring for someone with dementia. This includes accepting the pain of them not knowing who you are, and losing them, as they lose their identity. Through this we learn to be patient with who they are and what they can do, and to learn and to deepen from the experience of caring.
Ways to Practice the Paramita of Patience
- PAUSE: stop, take three breaths, become more aware of your breath, let go of any anger.
- Check in with your body: are you feeling grounded?
- Check in with your “human gas tank.” Is it filled with energy and patience, is it full, or are you running on empty and close to burning out?
- Practice panoramic awareness: with all-pervading awareness, know the situation in this very moment, remain in the center of things.
- Be honest with how you are feeling, cultivate a gentle honest relationship with yourself.
- Let go of the internal dialogue you are having, the energy of anger.
- Take a step back—don’t always respond immediately—pause.
- Respond, but don’t react, watch your own emotional distress. Keep it simple.
- Be gentle and speak slowly and offer comfort.
- Break down activities into easy steps, and practice compassion with patience.
- Try to sit down with the person you are caring for—try five minutes each hour, if possible.
- Be aware of your own anger. Know your limits.
- Schedule time off from caregiving; get respite.
Practice clarity with patience: be kind and hold your temper. The paramita of patience has an element of intelligence and wisdom, clarity and the eye of understanding and seeing things clearly. Patience never expects anything, so therefore we don’t get impatient. Treat the person with dignity, compassion and respect. Perhaps the opposite of impatience is trust and contentment, to be able to trust where you are and your perceptions.
Managing the anxiety of the person who has dementia may go through several stages as the disease progresses. They have emotional memories, and they can feel that they have forgotten. Practicing kind-heartedness with patience is key.
One technique that some caregivers use is called “therapeutic lying” or therapeutic fibbing. For example: If you say that you are going to the doctor, and that leads to resistance, then you might say that you are going to lunch and then stop by the doctor’s office on the way home. The technique is to tell a fib in order to avoid increased anxiety and agitation. This can help to reduce the stress of the person you are caring for as well as caregiver stress. Don’t feel bad if these communication techniques do not work for you. Not all situations call for a therapeutic fib. Instead of fibbing, you can also validate the person’s feelings. Empathize and respond respectfully by listening with attention. You can validate people with dementia by showing your willingness to enter their world, rather than trying to force them into yours.
Another technique is to use distraction: take the person for a walk, tell them a story, reorient them. You might ask a question, suggest a snack, sing a song, or move to a new room. These techniques are used to spare anxiety and upset for you and the person you are caring for. Try this when things get rough. Distract and redirect the person with dementia. Change the subject, change the environment.
Another strategy is to begin to shift away from the expectation of memory, which is disorienting, and to move towards the freedom that imagination can bring. This can be a very creative approach to dementia care!
Be kind, bring together compassion with the paramita of patience. Rest in the space, the healing space that exists between you, the caregiver, and the person receiving care. Bring your sense of humor to your caring. Let your patience grow so that you can be fully present to the needs of the person you are caring for. Each activity, each interaction filled with calm, patience, compassion, kindness and care. Care nobly!
As Phakchok Rinpoche says:
The path can be summarized very simply: Discipline for yourself. Kindness for others.
Artwork by Jayne Feinberg Stuecklen. Jayne is a painter and graphic artist living in Nyack, NY. She is a Tibetan Buddhist practitioner and student of Chogyam Trungpa Rinpoche. Besides her career in art and design she has been a volunteer hospice worker and caregiver.