As you face the end of your life, your family and friends also face the reality of a life without you. These can be difficult waters to navigate. Some people feel the impulse to comfort and protect their loved ones. Try to remember that it’s not your responsibility to make this easier on them. “If there’s any time in your life when you have the right to be selfish, this is it,” says Kelly Grosklags, L.I.C.S.W., B.C.D., a Minneapolis-based oncology psychotherapist and grief counselor.
Still, if examining your relationships will bring you peace, that makes sense. “I do an exercise with people where I will ask them, ‘Is there anything you haven’t said to somebody that you need to say, whether it’s ‘thank you,’ ‘I love you,’ ‘I forgive you,’ ‘I’m sorry’? And those are things that I talk with people about at the end because I want them to be in the best psychological place and emotional place that they can be,” Grosklags adds.
Some other things to keep in mind:
- Whom to tell is your decision. Your closest family and friends should be told when treatments have stopped working and you’ve accepted that your life is coming to an end. Beyond that, it’s up to you if you wish to let anyone else know. Or you can assign a family member or friend to let others know at a time that feels right to you.
- With the people you’ve decided to tell, be open about your prognosis and what you want to do with your time. The people closest to you may be involved in your plans, whether that means traveling, visiting them, planning special outings, or just being together. Tell them what your hopes are for how you wish to spend your time and how they can help.
- Ask for what you want from relatives and friends, and tell them to do the same with you. Direct and open communication is important now. There may be times when you want loved ones close by and other times when you want to be alone. Loved ones need to know when it’s okay to visit or call. And they need to tell you if there’s a day when they’re just not up for calling you or coming to see you. They might need time to grieve in private so as not to overwhelm you with their feelings. There will be difficult emotions on both sides, and everyone needs a break now and then.
- Be prepared for some relatives or friends to say the wrong things or distance themselves. Some people just aren’t good at handling bad news about a loved one. Even the people you care about most might say the wrong things. Some examples: “You don’t look that sick!” “What does your doctor think is to blame for the stage IV cancer? Could it have been prevented? Is there anything you could have done differently?” “Just fight hard, you can beat it!” Some might put you at a distance or drop out of your life completely — perhaps because they feel awkward or don't know what to say, or it’s just too painful for them. And that can be painful for you. If this happens, move your attention to the people who do understand and can be there for you. Some people find that friends and colleagues step up in unexpected ways, even if they weren’t that close to them before. Some people just “get it.”
- If you decide to stop treating the cancer, some relatives and friends might not be able to accept your decision. Our culture has created this myth that if you just fight long enough and hard enough, you can overcome cancer. Your loved ones might urge you to “keep fighting” or blame you for giving up too soon. They might go into denial about how the disease is behaving and refuse to accept it. No person with cancer makes the decision to stop treatment lightly, and it often comes after many rounds of many different therapies. You can explain what you stand to gain from stopping treatment, but ultimately they’ll have to come to terms with it on their own. If you can arrange it, it might be helpful to have a member of your healthcare team speak with them directly to help them understand your medical situation.
- Repair estranged or distant relationships if this is a priority for you and it doesn’t add to your stress. Some people feel a desire to repair relationships that may have grown distant or strained over time, whether due to past disagreements or differences, geography, or just the busyness of life. If this is true for you, you may want to seek the help of a counselor, social worker, clergy member, or other trusted advisor for ideas on how to best reach out. Kelly Grosklags also recommends the book The Four Things That Matter Most by palliative care specialist Ira Byock, M.D. The book provides guidance for healing relationships. If estranged relatives or friends reach out to you when they learn the news and you’re not sure what to do, it is your choice whether or not to put energy into repairing the relationship. You have the right to decide which people you want in your life at this critical time.
- Choose two relatives or other loved ones to entrust with legal documents and other directives. Put people in charge of knowing where your important documents are, such as your will, living will, and advance directive. It’s a good idea to revisit these documents with your loved ones to make sure they understand your wishes, since some of the legal language can be confusing. If you created letters, videos, or other keepsakes to be given to loved ones on special occasions, you will need someone to carry out your plans. If you have children and you want certain family members or friends to serve as their mentors or role models, make sure your loved ones know that. Visit Planning What You Want for the Dying Process for more guidance.
- If your family needs professional help, ask for it. If open conversations and communication aren’t your family’s strong point, you’re not alone. Many cancer centers have family counselors, therapists, or social workers who can help. They’re used to helping families work through the challenges that a terminal diagnosis brings.
Several members of Breastcancer.org’s discussion forum for people with stage IV breast cancer have recommended the book The Five Invitations: Discovering What Death Can Teach Us About Living Fully by Frank Ostaseski as a tool for starting conversations with loved ones.
Expert Quote“Sometimes people feel guilt when they’ve reached acceptance with the end of life. It’s like, ‘Everyone else around me is falling apart and they're sobbing, and I’m sitting here feeling relief and content inside.’ It’s not unusual to want to take on your loved ones’ feelings, but you have to be very careful with that, because when you’re going through cancer and are exhausted, you don’t have the capacity to take on everyone’s ‘stuff.’”
–Kelly Grosklags, L.I.C.S.W., B.C.D.