When a loved one is diagnosed with a terminal illness, many people find themselves navigating through unfamiliar territory. It is common to experience a roller coaster of emotions and a sense of uncertainty, and many Church members wonder how best to care for their loved one in their final months, weeks, and hours of life.
Family members, friends, and caregivers can play an important role in providing comfort and support to someone entering this final phase of life. Sometimes it is not so much what you say or do, but just being present with them that can provide a sense of reassurance and comfort.
When Jesus raised Lazarus, He didn’t unwrap him when He brought him back from the dead. Jesus asked Lazarus’s family and friends to “loose him, and let him go.” Why would Jesus have family and friends slowly unwrap Lazarus? Lazarus must have been caught so unaware, smelled terribly, and been uncomfortable finding himself only in rags.
How can we carefully unwrap our loved ones who have ailments that bind them, scare them, and put them in uncomfortable situations? We bear one another’s burdens. We mourn with those that mourn. We comfort—not fix—those that stand in need of comfort. Although the journey toward death may not be easy, it can often be a time of new insights, personal growth, and inner healing for caregivers who are asked by Jesus to surrender to the transcendent, to the unknown, to let their loved ones go.
Each person’s dying experience is unique, and no one can fully predict what it will be like or when it will occur. However, there are a few signs to look for, along with potential methods of care, to help guide the way if you are dealing with this issue right now in your life or for when your time comes to experience this part of mortality.
Dealing with Withdrawal
One important way to give comfort is to understand the process of “withdrawal.” It is common for people to begin to withdraw from friends, family, and the world around them as a normal part of the dying process. This detaching from surroundings and relationships may be because they are tired. It may be because their disease makes it harder for them to reason or have a good attitude. It may be because they are preparing for release and letting go.
What can you do? Don’t take hurtful words personally. Plan activities and visits for times of the day when the person seems most alert. Give your loved one some different times when you can visit them. Because hearing often remains intact to the end, speak to the person in your normal tone of voice. Identify yourself by name when you speak. Tell the person what you are going to do before you do it. Always speak as if the person could hear you.
Accepting Physical Changes
Another aspect of caring for the person is understanding that there will be physical changes. One such change is in appetite. Near the end of life, it is natural for a person to no longer be interested in food, or the person may not be able to eat or drink. Often nothing tastes good, and cravings come and go. This is often one of the hardest concepts for caregivers to accept because food is the way we nourish the body, and it is one of the last things caregivers think they can use to show love and attentiveness. As the body naturally begins to slow down, it is no longer able to digest food in the same way. Weight loss is expected and does not mean that the person is hungry or being starved by the absence of food.
Change in bodily functions, change in breathing, change in body temperature, confusion and disorientation, restlessness and agitation, and a surge of energy are other signs to be aware of.
What can you do? Let the person be the guide. He or she will let you know what is needed or wanted. As for food or fluids, liquids are generally preferred to solids. Some people find thickened liquids easier to swallow. People who can’t speak will sometimes cough, bite the spoon, clamp their teeth closed, turn their heads, or spit food out to let you know they don’t want to eat. Respect the person’s wishes by trying not to force food or drink upon them. Often a person near death may appear thirsty but won’t be able to drink water. Frequent mouth care may provide comfort. Use swabs to keep the mouth and lips moist.
Saying Goodbye
Many people have questions about saying goodbye and wonder whether it is appropriate to do so. Some are concerned that it will hasten death or communicate something unintended. Others may want to say goodbye but may not know what to say. In addition, some families have questions about whether they should give their loved one “permission” to let go. When and how to say goodbye is a personal decision, and there is not a right or wrong way to do it. Some families have difficulty starting the conversation, but find that once begun, it can be a gift. This time with your loved one is precious.
What can you do? Take the opportunity while the person is alert to say or do what you need to. Listen to the wisdom of your heart, and follow its guidance. Some people begin these conversations with: “What I love most about you . . .” “What I will always remember . . .” “What I will miss most about you . . .” “What I learned from you . . .” “What I will cherish. . .” Some people may choose this time to say, “I am sorry,” share forgiveness, or let go of past conflicts. It may be helpful to lie in bed with your loved one and hold them, or take their hand and say everything you need to say. Tears are a normal and natural part of saying goodbye and can be a healthy expression of your love.
Supporting the Caregiver
Caring for someone who is in the final weeks and days of life can be physically and emotionally demanding. It may feel overwhelming at times and leave you weary in body, mind, and spirit. In addition, some caregivers are often juggling other responsibilities such as work, household duties, caring for other family members, or addressing their own health concerns. Trying to balance another’s care with your own needs for rest and nourishment is challenging, but important for your own well-being.
What can you do? There is a lot of support out there for caregivers from the community, from the local ward, from a hospice team, from the internet, and especially from family. Generally, the hardest thing for most caregivers is the reluctance to ask for or accept help. In most hospices, there are wonderful volunteers who love helping caregivers with things like staying with their loved one so they can get a break, helping with household duties, or aiding in projects like recording a life review. A volunteer can also help your loved one write personal letters to family and friends. Most hospice companies also have a caregiver support group and a bereavement support group for caregivers, family, and friends. These groups can help those grieving turn to their source of healing.
Gaining a Sense of Peace
When the scriptures talk about the sting of death, they remind us of victory through our Lord Jesus Christ. But even though Christ’s plan is so wonderful, death’s sting can still be very sad, untimely, lonely, and just plain hard. We can feel misunderstood, confused, and forgotten, just as Mary and Martha felt when Lazarus died. Continue to look to your source of healing like these two faithful women did: “Then said Martha unto Jesus, Lord, if thou hadst been here, my brother had not died. But I know, that even now, whatsoever thou wilt ask of God, God will give it thee.”
Like the good Samaritan cared for the traveler, our Savior has always cared for your loved one. But He asks us—just as He asked the innkeeper—to “take care of him, and whatsoever thou spendest more, when I come again, I will repay thee.” God is mindful of all of our expenditures. As we continue to come unto Him and take His yoke upon us by tending to those left in our care, He can give us and our loved ones rest and peace to our souls.
Kory Scadden is a Certified WSHO Clinical Chaplain at Good Shepherd Home Care and Hospice in Salt Lake City.