My grandmother Betty battled cancer for more than a decade. Most of my memories of her are tinged by the effects of disease – terrible bloating and vomiting caused by experimental drugs, brutal rounds of chemo that made her hair fall out and grow back in different shades and textures, and our family spring break trips to Mayo Clinic when she was too weak to be at home.
Despite her prolonged illness, I remember many good things too. Grandma’s nickname was Mean Betty Jean but she was just the opposite: invariably kind and calm, with a gentle smile and a friendly chuckle that made me want to cuddle into her side. She taught me how to play card games like Crazy Eights and Kings in the Corners. Every year for Christmas, she bought me pajamas that came packaged with a matching stuffed animal; this was both delightful and silly.
Even though my grandmother was sick my entire childhood, I never realized that she was slowly dying. One ordinary Thursday I came home from school, made myself a snack and was eating it standing by the sink when my mom came in and told me that grandma had died. We stood there for a long time, quietly crying by the kitchen sink. I thought I’d share many more spring breaks with grandma. I was looking forward to another Crazy Eights tournament. But most of all, I wished I’d had the chance to say goodbye and to give her the best hug I had because I knew it would be our last.
Now in my mid-thirties, I’ve said goodbye to several beloved family members and friends. As a hospital and hospice chaplain, I helped people prepare for death and supported grieving families. With death and dying as the landscape of my daily work, I learned that while being a witness of death is never easy, it doesn’t have to be depressing or scary.
The time that precedes death can be the most beautiful time you share with someone you love. It’s a time to give and receive precious gifts. Not gems set in velvet boxes, but true words and actions. Things as simple and life-giving as presence, as saying I love you, as laughing over a hand of cards. These are gifts with the power to free souls from fear and pain and open them to gratitude and joy.
If your loved one is dying – my thoughts are with you. I pray you have the courage to give and receive the following gifts.
Talk about death. We often avoid the D-words – die, death, dying – because we fear it will be too painful for the one who is dying. In my professional experience, dying people want to talk about death. Unless they suffer from dementia, they know it’s their daily reality. Most want to acknowledge it, talk about it and prepare for it as best they can. They want the opportunity to review their lives, tell their stories, to confess their regrets, and seek forgiveness. How will they have a chance to do this important work, this emotional preparation, if we are afraid to accept their reality? One of the greatest gifts you can give your loved one is the freedom to openly face their death.
Know and honor their wishes. Terminal illness comes with an obstacle course of decisions. Do we pursue life-extending medical treatments? Will we manage the pain with narcotics or alternative therapies? What finances do we need to get in order? When and how should we prepare the memorial service? These are important questions, but too often families tackle them without consulting their loved one. Two of the greatest emotional struggles of the dying are loss of control and loss of identity. Asking your loved one about their wishes, and following through with them, honors their personhood. It helps them retain an important strand of control. Start with Five Wishes and advance directives.
Address the bucket list. People who are dying often daydream about what they would do if they had unlimited time and resources. For many, this ‘bucket list’ may not be written on paper, so talk to your loved one about what they want to do with their remaining time. Many bucket list items can be accomplished outright but you might need to do the legwork. Other items might be beyond your loved one’s physical capabilities, but could be modified to achieve the same sense of satisfaction.
Consider hospice. While hospitals do what they can to create a comfortable environment, it’s not an ideal place to share your final days. Hospice provides 24-hour on-call support for patients and families in a variety of settings: private homes, retirement communities, skilled nursing facilities, and in-patient hospice units. It is a free benefit of Medicare, Medicaid (in 47 states) and of most private insurance carriers. A consistent, interdisciplinary care team – including a physician, nurses, a social worker, and a spiritual care provider – will manage medications, address pain, provide informed and compassionate guidance as things change, and generally enhance your loved one’s quality of life. Not all hospices offer the same range of services, so ask for referrals in your area. If you have more questions, start here.
Share simple pleasures. It’s easy to get distracted by all the details that come with caring for a loved one. Meetings with lawyers and ministers are important, but no more so than surrounding your loved one with what gives life to their soul. Focus on simple things. Cook their favorite meal, even if they can only enjoy a few bites or the smell. Hold hands. Reminisce and tell your loved one why you cherish them. Say I love you. Put a cozy lounge chair in the garden and share the sunshine and the quiet. Have a family movie night. Read their favorite stories aloud. Let the grandkids star in a family concert or play. This will be their comfort and joy.
Let them apologize. It’s natural to seek forgiveness and express regret at the end of life. Research shows that the dying seek forgiveness in three categories: the forgiveness of God, of others and of self. Surprisingly, the data says that forgiveness of self is the most difficult category. Seeking the forgiveness of others is certainly a doorway to forgiving ourselves. Families often try to deflect, minimize or avoid such apologies because they don’t want their loved one to feel burdened by grief. Well friends, grief is unavoidable at this point. The good news is that letting your loved one speak their truth is precisely the thing that can lighten their burdens. So when they speak, don’t interrupt. Take deep breaths and listen until they are finished. Then offer words of acceptance and love.
Let yourself be weak. If I had a dollar for every time I heard a family member say I have to be strong… I know this is difficult advice, but it’s much kinder to let yourself fall apart from time to time. Have a good cry in the shower. Go into the basement or the woods and yell. Confess your fears and struggles to a good friend or counselor. Cry out before God. These are better coping skills than trying to rigidly harness the emotions that come with losing someone you love. Grief is an unruly thing; it comes and goes in unpredictable, sometimes turbulent, waves. Try though we might, the tide is not something we can control. It’s best to ride the cresting waves and trust that they will deposit you on shore.
Care for yourself. It’s okay to care for yourself even when your loved one is dying. In fact, it’s critical. Stress and grief will upset your ability to assess your needs, so listen to your friends and family when they say you need a break. Let them take you out for coffee or to the spa. Accept their casseroles, their offers to clean your house and their long hugs. These things are like a good saline drip to a body parched from grief. Plus, it will give them a practical way to help you, which is what they desperately want to do.
Plan a memorial service. This part of the grieving process can be difficult, but also incredibly healing. Through words, music, prayers, pictures, flowers and food you can craft a gathering that honors the life of your loved one. Invite family and friends to contribute and do the work together. You’ll laugh and cry and discover later that this is when the mending began.
Stay connected to God. Friends, this is the time for raw and real prayers. This is a time to use the Psalms like prayers when you have no words of your own. This is a time to sit on the floor in your closet and open your hands to heaven. It’s a time to acknowledge your weakness. To ask for comfort and for the strength for one more day together. It’s a time to realize that God is in every moment working for your good and for the good of your loved one. And when pain, fear, and confusion come, this is when you’ll need to trust that things are not as they seem. Remember that God is with you, doing the unseen, gathering you all under the shadow of his wings.
Have mercy on me, my God, have mercy on me,
for in you I take refuge.
I will take refuge in the shadow of your wings
until the disaster has passed.