Augustine of Hippo wrote: There are days when the burdens we carry chafe our shoulders and weigh us down; when the road seems dreary and endless, the skies grey and threatening; when our lives have no music in them, and our hearts are lonely, and our souls have lost their courage.
Those words make me think of “hang time”. Hang Time in football is when the ball is in the air and for a few seconds stays there, leaving those on the ground unsure exactly when it will start to descend.
That is a good way to describe those living with someone who is dying. You hold your breath knowing it will happen, yet not knowing exactly when, and the knowledge of that is threatening, exhausting and frightening - and you will grow weary. So what do you do in the meantime?
Author James Miller suggests 12 things to remember. Following are the first six.
1. Understand this is one of the most stress-producing jobs there is. At the same time, it should be not be painted as impossible. It is a time when you must do great self care. Pace yourself. While all you feel now is distress, you can also know you will grow from this experience. Remember you’ve been through difficult times before and you will also survive this.
2. You will have strong and perhaps unusual feelings. Sorrow, guilt, anger, confusion, affection for the one you love, respect for what they’ve done and are doing, joy for what you can celebrate and share, proud and even gratitude when you realize you’ve been given another day.
Whatever they are, they need an outlet. You can talk it out - with an individual or a group; write it out - letters or journaling, expressing yourself through music or art, making something with your hands; cry it out. Just do not try to bury the feelings. They will come out at some time and in some way, so be in charge of how you want that to happen.
3. The dying person will be as they’ve always been, only more so. When told they are dying, they will respond in their own unique way. Some are visibly upset, others stoic. Some are asontished and others take it in stride. Some reach out to others. Some withdraw into themselves.
As a rule, they will be the same kind of person now as before. They will prefer to live fully as long as they’re able and to be treated as very much alive.
4. You cannot do everything yourself. Let others share the load for your sake. This is not a sign of weakness, but of wisdom and maturity. Let others share the load for their sake. They too can benefit when given opportunitites to demonstrate their concern and love. Let others share the load for the sake of the dying person. It helps them knowing they matter to others.
5. To be a good caregiver, you must take good care of yourself. Honor your physical needs – eat balanced meals, get plenty of rest breaks and adequate sleep, exercise regularly, learn and practice relaxation techniques. Cultivate efficiency – Do what is necessary, find shortcuts in your chores, organize meals, errands and schedules to save time and preserve energy and allow others to assist you. Set boundaries – make time and space for yourself, do not try to live up to other people’s expectations. As much as is possible, maintain some of your everyday routines, stay in touch with friends and remain involved with life in ways that nourish your mind, heart and soul. Take time away. Do things that give you a break and refresh you – a movie, a meal with a friend, a massage, a walk outdoors. Make room for laughter – watch funny movies, TV comedies, joke with one another, remember humorous incidents from the past, giggle or guffaw, but do it out loud. Detach from results – recognize what is beyond your control. Stay in the moment - concentrate on what the present offers, be deliberate in what you are doing, breathe in that which satisfies you and breathe out your disappointments. Savor happiness. Live.
6. The one who’s dying is in charge. The person dying gets to make certain important decisions on their own. They should be informed about the decisions of their medical team, their disease and prognosis and have the right to make decisions about the kind of care they will receive. Your role as a caregiver is to encourage, support, and carry out the decisions they make. You are not to act for them without their agreement. You are not to speak for them without their permission. You are not go think for them unless they can no longer think for themselves. This is their show. Let them be the star.
The next blog will list 6 more things to remember.