Owen Surman, a psychiatrist who lost his late wife Lezlie, wrote his account of their last times together in “The Wrong Side of an Illness: A Doctor’s Love Story.” He says, “I began to live in the present. Tragedy had cast a spotlight on the beauty of life and the power of love.”
Surman describes how caregivers must put aside plans and dreams and focus on the needs on the person who is ill, learning helpful strategies and adaptability. “Live like a surfer! We do not command the tides,” he says.
A terminal diagnosis might actually lead to more intimacy between the two of you, as you both put aside quarrels and disappointments.
Much of the time, your loved one may treasure life as usual. You may be a child caring for a dying parent: Allow a parent to parent you. If you normally confided and sought out advice, don’t stop completely, or your parent will feel the loss. Look for cues. If your dear friend is ill, try to keep up your natural banter and story-telling. If you are sharing a household with a dying person, help but don’t do everything. Daily chores can provide structure, purpose, and distraction. At the same time, try to add variety and color to the days when your loved one is feeling strong.
Invite a conversation about fears. Your loved one may be afraid of pain, or of losing personal autonomy. People who are ill often fear becoming a burden. Be willing to listen and say so, then demonstrate your openness — ask a question and wait. Don’t rush. Never underestimate the value of your presence, even if you feel helpless and wish you could do more.
Urge close friends and family to speak candidly to your loved one, asking, “What can I do? What shouldn’t I do?” Let friends and family know that they need not provide forced cheeriness or solutions. The simple words may be best: I'm sorry. I want to help if I can. You're a wonderful friend. I love you.
Some people may not speak of their fears with family, but open up with a medical professional or spiritual counsellor.
Don’t expect the person you love to openly come to terms with death. Be ready for any conversation a sick person begins, but don’t push. Your loved one may need to let the truth in slowly and continue to live as before for as long as possible. As long as your loved one isn’t seeking out painful treatments of no therapeutic value, accept what you see as denial. Second opinions are fine. Let your loved one hope.
On the other hand, your loved one may be faster than you are to face death, sometimes with little or no discussion. Do not push too hard against a choice to pursue hospice care rather than further treatment, though you might ask why. You can assure your loved one that he or she is not a burden. If you live in a state that has legalized assisted suicide for the terminally ill, again assure your loved one that you’re in no rush and are glad to provide care. Your loved one may ask for a prescription for a sense of control and decide later when or whether to take it; many never do.
Don’t insist that you can do all the caring alone. Surman suggests enlisting help from friends and family, identifying what each person can do — from telephone calls, child care, preparing meals, visiting the hospital, and transportation. It’s a good idea to devise schedules — for instance, for hospital visits from friends — and advise people how long to stay.
Surman believes that grief does not progress through standard stages. The idea is an oversimplification of a model proposed by the psychiatrist Elisabeth Kubler-Ross, who also observed that the “stages” might overlap and some reactions never occur. Your emotions can change quickly, from denial one minute to anger the next, with sadness, relief, moments of joy, and waves of crying all tossed in.
Don't allow yourself to get sick or run down. Do other things to recharge. Your loved one does not want to see you suffer. If you find yourself afflicted with insomnia, chronic irritability, suicidal thoughts, or the desire to withdraw from everyone you know, seek help.
Surman says that he felt “empty” and “old” after Lezlie’s death. He bought himself a deep red Sarouk Persian rug and comforted himself by lying on it on the floor. He began online dating and cried on the way home from lunch dates. In his work, he became more candid, and felt that he could reach his patients more intimately.
May 14, 2015
Janet O’Dell, RN