The day my husband Bruce was diagnosed with an aggressive stage 4 esophageal cancer is seared into my memory. How could this be happening? Bruce was one of the healthiest people I’d ever known. I was shaken to learn that many patients die within a year of noticing the first symptoms. I thought we were going to have at least twenty more years together, but it wasn’t to be.
After a roller coaster ride through the healthcare system, when it became clear that Bruce’s cancer would not be tamed, that his illness was, indeed, terminal, he decided to stop treatment. Bruce transitioned from being someone who was sick and fighting for time to someone who was dying and fighting for other things—family, traveling, chocolate, and wine.
The first and most important step we took was to accept that Bruce was dying and to concentrate on effectively dealing with the ramifications. That acceptance allowed us to focus on achieving the peaceful end-of-life that he wanted. I learned that I had an invaluable role to play, one that became even more critical as his illness progressed.
If you or your loved one have not thought about or prepared for death, you may not know where to start when your loved one is faced with a terminal illness. I learned successful coping strategies when Bruce died.
These 5 actions will help you feel more confident that you can handle the challenges ahead.
1. Have “The Conversation”
Talk with your loved one about what they want at the end of life and how you can help them. Is quality of life more important than quantity? Are they worried they’ll get care that is too aggressive? Do they want to spend their last days at home? There are tools available to help them think through and document what they want at end-of-life.
This may be one of the most intimate conversations you will have.
2. Educate yourself about death
Confront your fear of the unknown by learning about what happens physically and emotionally at end-of-life. There are excellent books that will inform you about the process of dying, palliative treatments that are available and the many services that hospice provides. We didn’t know that the body has an orderly shutdown process that makes predictable what will happen and when. Knowing what to expect helped us feel more calm, confident and prepared.
3. Know what you’re dealing with
Understand the diagnosis and what you can expect in terms of symptoms, treatments and time frames. If your loved one doesn’t already have a healthcare directive and healthcare power of attorney help them create these legal documents that will ensure they get the care they want. You will feel more confident and in control as the illness progresses and critical decisions must be made.
4. Make the healthcare system work for you
You have a powerful role to play in helping your loved one navigate a complex healthcare system. Take notes during doctor visits. Research what you’ve been told. Question your doctors. They are understandably optimistic, but it’s critical to get a realistic idea of how much time your loved one has left. Know that an option is to decline treatments. Being in control will make you and your loved one feel more confident.
5. Engage hospice
Bruce had hospice for just the last 10 days of his life. If I had known all that their nurses, social workers, and spiritual counselors did we would have started much earlier. They are far more than helping hands, though without those helping hands I couldn’t have done all that was needed to fulfill Bruce’s wish to die at home. They answered all our questions, ordered equipment and alerted us to when we could expect the physical and emotional changes that happened during Bruce’s last days.
Some people cope with difficult situations by denial, but the results can be devastating, especially at the end-of-life. If you are prepared and actively engaged and you are helping your loved one, you will feel powerful and grateful for the role you played in supporting them to achieve a peaceful end-of-life.
Many more of us are dying from disease rather than sudden death. We are also living longer with terminal illnesses. The plus is that we have more time to say goodbye and to live fully until the end. When Bruce died we had been saying goodbye and easing his path for months, knowing what was coming. Our last months were some of the most celebratory, peaceful, and intimate we had shared during our forty-six years together.