When you’re being treated for a serious illness, hope means holding onto the possibility that things are going to turn out just fine. That’s what everybody tells you to do when you’re being treated for a serious illness. You hope that the treatment you’re receiving is going to do its job. You hope that you’ll be better soon. And you hope for the day when you will look back on this experience as a disruption in your life that you managed to get through.
Holding on for dear life, as the saying goes.
The treatment may indeed have done its job. At least for a while. Or maybe it never seemed quite able to stand up to the force of your disease. You may have thought about what the future might hold, if things didn’t go so well.
Even When It All Feels Hopeless, There is Still Hope
It’s been my personal experience that few, if any, of us are fully prepared when the physician utters the words, “I can’t do anything more for you.” A few simple words, but words that suddenly turn your life upside down.
I have been through this with both of my parents, and a few friends, as well as many of my clients. These experiences have taught me a few things.
We can know a lot about what it’s like to come to the end of life by being there for loved ones who are on this journey. But I still have to ask if we can ever be fully prepared to hear the words that our own life is ending. And after hearing these words, how can we even begin to accept them? What does acceptance mean for how we live out the days ahead?
What I think is that the answers are unique to each of us, to be discovered on our own personal journey.
And that again brings to mind the word hope.
How do you have hope when you have been told you are out of treatment options? Were those words about staying hopeful just a profound joke? Has hope been replaced by hopelessness, walking hand in hand with helplessness?
I wish I could tell you the absolute best way to cope during the days ahead. I don’t think anyone can, not really. But I can humbly share what I have learned from offering a helping hand, and a shoulder to cry on, for others who have been on this journey:
Feel your feelings. Lots of emotions are going to come up for you, moment by moment, day by day. Disappointment, anger, sadness, fear, among others. Let yourself feel how you feel. Cry when you need to. Get mad when you need to. And forgive yourself for those times when you won’t be at your best.
Find a safe place to talk. Spend time with people who are willing and able to listen to whatever you have to say, who won’t tell you how you should feel, who won’t run away no matter what comes out of your mouth. Who can just sit and be quiet with you. And still not run away. Keep in mind that your loved ones may not be able to hear everything you have to say. They’re doing the best they can. But find someone who can go the distance with you. A friend, a family member, a member of the clergy, a counselor. Don’t go through this alone.
Be quiet when you need to. You may have moments when you just need to be alone to think, to stare out the window, or just rest. Let people know when you need time to be quiet.
Let yourself grieve. A few years ago, a close friend was in the process of dying. And he said to me, “I’m grieving for the loss of my life. What I wish I had done, what I wish I had done better, and what I won’t ever do. And I’m grieving for the people who love me, and how you will suffer when I die.” When we experience a loss, we grieve. And with grief comes acceptance.
Encourage your loved ones to grieve with you. Encourage them to talk about their feelings. All of their feelings. You might show them how by talking about yours. Say the things that need to be said, including good-bye.
Take charge of your healthcare decisions. Or at least as many as you want to. You may be faced with decisions regarding measures taken to extend your life, hospice care, and where you want to spend your last days. Decide what’s important to you and what’s not so important, and make the decisions you want to make. You may want to do some of your own research.
While you’re at it, tie up loose ends. Including any legal or financial issues that might cause you concern, as well as burial arrangements. Again, it’s up to you what you want, or don’t want, to focus on. Make your own peace of mind your priority.
Get support. And get more support. All kinds of needs may come up. Help in taking care of yourself. Advice to help make decisions. Additional medical care at home. Consequently, you may be reaching out to all kinds of people. This isn’t the time to go it alone. And look at it this way: Your loved ones may be feeling their own helplessness, and welcome the opportunity to lend a hand. Let everybody know what you need. Along with what you don’t need.
Enjoy your life. What makes for a good day? Maybe it’s watching the sunrise. Eating foods you enjoy. Spending time with someone you love. Do something every day that makes you smile. Make it a group project by enlisting your loved ones to help crank up the smile machine.
Make a spiritual connection. Religion and spirituality can be a great comfort during this time. This might include attending services at a place of worship, or asking members of a congregation, or a member of the clergy, to visit you at home. Watching religious services on TV. Or reading inspirational books. Listening to music, or taking a walk in nature, can also be a spiritual experience. And so can giving a few words of comfort to someone who needs them.
Define your hope. And live hopefully. What do you want to accomplish during the days ahead? What do want your loved ones to remember about the end of your life? Share your love for the people you care about. Share memories from the past, and create new ones. Look forward to something – a visit, a walk, the view of that oak tree in your back yard. Every day.
The journey of life comes to an end for all of us. And I am left with my own question: Will I know what to do when it’s my turn?
Like you, I’ll only know when I know. Like you, I am hopeful.
More from Dr. Gary:
Talking to Your Doctor: Deciding When, How – and If – to Speak Up.
Chronic Communication at Home: How to Stop Walking on Eggshells
Chronic Communication at Work: Talking about Accommodations for Your Chronic Condition