Providing Help with Letting Go: Offering Comfort at the End of Life

One day, Amy called her mom, who was in her 80s and lived alone. During the conversation, she asked, “Did you have lunch?” Her mother wasn’t sure. A week passed before Amy felt certain that her mother’s appetite just wasn’t the same as it used to be, and sometimes she simply didn’t remember to eat. A checkup with her doctor revealed that she had lost ten pounds in two months. Amy started taking lunch to her mom and conversing over lunch.

During their visits, Amy was able to revisit favorite memories: shopping downtown together every Saturday, her mom’s amazing talent for listening, the fun Christmases and family parties their family shared. She was also able to review many of her mom’s special recollections: skipping fourth grade and graduating from college at age twenty, meeting her husband at a high school dance, and working on Fifth Avenue during World War II.

The weight loss continued, so Amy took her mother to the doctor again. This time he said she qualified for hospice. While the diagnosis was initially scary for Amy, she learned that hospice included many services to help people near the end of life. When a kind aide began visiting to provide help, the sense that she was not alone comforted Amy. As her mother became increasingly frail, more nurses and aides visited to provide assistance. A chaplain held her mom’s hand and sang her a James Taylor lullaby. While the fact that her mom neared death was one of the saddest experiences of her life, the reality that neither of them faced the situation on their own brought more relief than Amy could ever imagine.

Moving Toward Heaven

Jo, a hospice nurse with Heartwood Hospice, explains that when an elderly person experiences changes such as sleeping more, having memory issues, forgetting to make and eat meals, and starting to become incontinent, it’s a sign that they are “moving toward heaven.” Weight loss can also be significant. Food is one of the last things that elderly people get enjoyment from. If that suddenly changes, they lose weight, and their clothes fit loosely, this is also an indication of proceeding toward the end of life. “If they are talking about their life being over, or speaking about a spouse that has passed, they could be packing their bags and getting ready,” Jo says.

Visit Early, Before the End

Kathie Supiano, PhD, and LCSW, is the director of Caring Connections:  A Hope and Comfort in Grief Program. She states that the time to share a significant conversation with a person whose life is ending is earlier rather than later. “Most people who are enrolled in hospice will ask, ‘How long do you think I will live?’ When the doctor says four to six months, the people think, ‘I’ll be like I am today and then I will die.’” Instead, she explains, there is a process in moving toward dying, a dwindling away or petering out. “The last month the person might not be not participatory in life anymore. They may be sleeping all the time, and near the end may be in a coma.” At that time, you may still talk to them and may well be understood, but your conversation will be a one-sided exchange. “If you want to have conversations that are meaningful and interactive,” says Supiano, “the time to visit is earlier rather than later.”

Offer Emotional Support

At a time when others may be backing away, any dying person needs family members and friends who are willing to step forward and join him in that journey. Although life expectancy has increased dramatically in the past 100 years, we all must face the certainty of death. We can help family and friends by providing comfort and care near the end of life. People who are dying need physical comfort, attention to mental, spiritual, and emotional needs, and help with practical tasks. Complete end-of-life care includes helping the dying person manage any emotional distress, since he or she might understandably feel depressed or anxious. Keep objects that are meaningful to the person close at hand. If the person you are comforting is in a hospital or care facility, remember to check with the health care team to make sure your care plans are an appropriate addition to what is already being offered.

Provide Spiritual Comfort

A dying person might also have specific fears and concerns. Much of this has to do with religious beliefs. A hospice or hospital chaplain can ask what a person’s religious beliefs are and help them approach their situation using what they know and what is comfortable to them. When Amy’s mother explained that she wasn’t especially religious, the chaplain held her hand and sang a lullaby to her. On another occasion, a chaplain listened as a woman explained that she found comfort in nature and did not need an afterlife. Many people find reassurance through a belief in continued existence after physical death. As a friend or family member, you can support the person’s spirituality. Let her talk about what has meaning for her, pray with her if she would like, and arrange visits by spiritual leaders and church members, if appropriate. Once people realize that you didn’t come to give them advice, they are often willing to share what is going on with them spiritually and emotionally.

Offer Practical Assistance

Help with practical tasks can be a relief to both the person who nears the end of life and to his caregivers. Everyday tasks can be a source of worry to someone who is dying. Taking over small tasks (such as bringing in the mail or newspaper, writing down phone messages, doing a load of laundry, feeding the family pet, taking children to soccer practice, or picking up medicine from the pharmacy) can provide much-needed relief.

While many people ask, “What can I do for you?” consider making a specific offer. Say, “Let me help with…” and suggest something you can do. If you’re not sure what to suggest, talk to someone who has been through a similar situation. Find out what kind of help was useful. If you want to help, but can’t get away from your own home, you could schedule other friends or family to help with small jobs or bring in meals. That would allow immediate family to give their full attention to the dying person.

Use Alternative Communication

Setting up a phone tree or computer listserv can reduce the number of calls to the house. A listserv is a way to send the same message to a large group of people through email. Some families set up a website where they can share news, thoughts, and wishes. These can all save close family members from the emotional burden of frequent questions about how their loved one is doing.

Establish Peaceful Relations

Establishing peaceful relations and, if possible, moving past estrangements while loved ones are still alive can ultimately be comforting. “Especially when there is a sudden death, not every family member will be at peace with everyone. But the phrase ‘don’t let the sun go down on your anger’ reflects the reality that you may not have a tomorrow. To be able to say, ‘To the extent that I am aware, I’ve done everything to be at peace with my fellow men’ is calming.” Supiano says that her father lived for the idea that if he died tomorrow, everyone would know that he loved them and that he was also aware of their love. But she also adds that such a state of mind may be difficult to achieve and admits that she herself is still working toward this goal.

Honor the Dying Person’s Wishes

A dying person’s wishes should have a higher priority than those of the survivors, who will have more time left to deal with the situation. We should do everything we can to let the dying person have it their way. Concerning the funeral, there are two priorities—what the person who died wanted and what will bring the family the most comfort. One person could say the priority should be maximum dignity, while another might say, ‘We need balloons.’ If the funeral doesn’t go the way one person in the family chooses, they can be reassured if the funeral was what the dying person wanted—for example, that the hymns or the casket were ones he chose or would have chosen. We should be able to walk away, after the funeral, with the idea of a job well done.

Grieving Is Ultimately Good

During the grieving process after death, loved ones might say to themselves, “I will miss this person terribly. Life won’t be the same because of this absence.” At this time, Supiano suggests also thinking, “Even in the face of this loss, I am still more grateful that I had that person in my life, even though the time was too short.” Such feelings will probably not arise at the funeral or even in the first years after. “There is usually a little more work to do before a person is at peace with the life and relationship he had with a lost loved one.” She adds, “Optimally, we live life prepared to die and to lose people we love. I teach students in my palliative care class that the only way to escape grief is to be the first to die or not ever love anyone enough to miss them. Every time we entertain the idea of loving someone, we open our heart to grief.”  While grieving includes feelings of loneliness and doubt, grief is actually one of life’s developmental processes. It’s a good thing, like growing pains.

Savor the Moments and Take It Slow

The time near the end of life is precious and sweet. It's an interval when much has been taken away, and it's time to help the dying person savor the little bit of life that remains.  Be prepared to offer help that you feel will be truly comforting. Listen calmly. Be ready to respond gently to both profound and simple statements. Offer a favorite milkshake, a well-remembered DVD, or a short drive through the old neighborhood. Rejoice in reminiscing, remembering that this may be the last time you hear that old familiar story you could recite yourself. Offer reassurances, such as saying you'll water the plants, or you'll call in the morning, or you’ll be back again tomorrow. Encourage the person to recall the moments you know they love to relive. Feel free to break the rules and eat a lot of ice cream or watch five episodes of “I Love Lucy” in a row. Remember the small comforts—a heated rice bag, a freshly-made sandwich on soft bread, reading aloud from a beloved children's book. Realize that the comfort you are choosing to extend is also like a warm hug you are giving to yourself.

- By Carolyn Campbell