I’ve been struggling with this post for quite a while now. This is a HUGE topic and I had to come to the place where I realized this was not a thesis, but a blog post and that I could not possibly say everything that could be said. What I’ve tried to do in the following list is highlight some concrete ideas and tools for the emotional matters of a terminal illness. I’ve drawn on my years of working with dying patients and their families – the lessons they taught me directly and those I’ve observed.
I don’t know where you are in your disease process. Many of these items listed assume you have some time (weeks or even months), but they apply even if you have been given a prognosis of less than that. Not all of these will make sense for all people. Pick and choose what may work for you.
1. Identify your emotional support system. This person or persons may not be the most obvious person. Your wife may want to avoid the subject completely. Your best friend may be too emotionally raw to have a meaningful conversation. You may not wish to confide in your children or grandchildren. Who are the people in your life you can talk to – REALLY talk to? Once you identify this person or persons, ask them if you can be open with them. Tell them that this is going to be an emotional roller coaster and you need someone who will listen – not try to correct, or stay positive, or avoid the topic – someone who will let you air your emotions and not try to fix it.
2. Allow for the open expression of your emotions. Warn your family (and by family, I mean anyone in your orbit who is close) that you will have roller coaster emotions (as will they) and that you will need to express them somehow. Know that you will run the gamut from anxiety to sadness to guilt to anger and everything in between. It is sometimes not pretty. It is one thing to know that someday we all die; it is completely another to have the knowledge that *I* am going to die. Your guts will hurt. Your throat will constrict. Your heart will race. You will have moments of sheer terror. And you will have beautiful moments with your loved ones. The end of life is often the most precious times families spend together.
3. Understand how challenging this is for your caregivers. Just as your emotions will be running the gamut, so will theirs. Their anxieties and sadness and guilt and anger will be from a different source, but just as you are struggling, so are they. Your caregivers will worry about your comfort and whether or not they are doing enough. They will struggle with whether or not to carry on their normal routine (like grocery shopping) or spend every moment with you. They will worry about life after your death. Allow for them to air their emotions as well.
4. Take care of unfinished business. Dr. Ira Byock says that there are four phrases that need to be said for a good death: “Please forgive me”, “I forgive you”, “thank you”, and “I love you”. You will naturally do a life review, meaning you will look back over your life and count your blessings as well as your regrets. Reviewing your relationships – past and present – may bring to surface some unfinished business. If this is the case, take the time now to repair them. I recently had a client who said that her husband had not been a great husband or father or person, but that once he became terminal and did a life review he recognized how he had hurt his family. For his children it was too late, but for his wife he was able to make amends. She said that in the last two weeks of his life, he was the man she always hoped he would be. He asked for forgiveness, received forgiveness, thanked his wife for being the person she is and told her he loved her.
5. Consider writing legacy letters. In order to clear up any of that unfinished business, you may choose to write letters rather than speak to someone directly. Or you could write letters to your children or grandchildren. For your children, you could write a list of life lessons – those things you’ve learned along the way, little pearls of wisdom you’d like them to know or remember. Or you could write a memoir – where you grew up, your family life, your deceased relatives, how you met your partner. For your grandchildren, you could write letters to be opened on specific occasions, like a graduation, milestone birthday or wedding day.
6. Review your bucket list. Is there anything you’ve always wanted to do that you could do now? I once had a patient who always wanted to ride in a Porsche, but never had the opportunity. The one and only Porsche dealership I called agreed to bring down the car of my patient’s choice and take him for a spin. The fellow took it a bit further on his own by bringing a Porsche baseball cap and a blanket. My patient grinned ear to ear for days and days. Another patient wanted to ride on a motorcycle one more time and was able to do that. I just saw today on Facebook that a dying retired forest ranger wanted to go outdoors in the woods one more time and his fellow rangers helped make it happen. What is it you would like to do?
7. Create a memorial keepsake for your children and/or grandchildren. My favorite example of this is when a grandmother made individual quilts for her grandchildren and then wrapped the children up, hugged them and had a picture taken of the hug. She told them that whenever they were missing her, all they had to do was wrap the blanket tight around them and feel her hugging them. (If that doesn’t make you tear up just a bit, you’re just not human!) Use your creativity to come up with something unique and meaningful for the people in your life. Maybe you make them fishing lures, or photo albums, or ornaments, or birdhouses, or write out your family recipes, or….
8. Keep a journal or a blog. Include daily gratitudes. You will be going through so many emotions as well as physical and spiritual changes as your illness progresses. Writing things out is great therapy. Counting the positive occurrences is so very important to this process. You will naturally begin to withdraw from life as you now know it. At some point, you will not want to socialize or go out or engage in any of the activities you used to enjoy. That’s natural. As your world shrinks and you keep only a few people close and in your inner circle, remember to look around for the little things that are important. One major life lesson in all of this is that the things you used to think were important just aren’t. I remember one patient laughing and saying that she agonized for months over which fabric to choose for her living room chairs as if it was the most important decision she ever had to make. When she looked at it, she realized how seriously unimportant that was. We’ve all heard it said that at the end of our lives it isn’t about the things or degrees or titles or possessions, it’s about the relationships, the people. You’ll be looking at them with new eyes, new awareness. You’ll be looking at everything with a new awareness. Write about it, think about it, try to find the moments to be grateful for.
As always, feel free to leave a comment below or email me at firstname.lastname@example.org.
Copyright 2014 Lisa B. Wolfe, Translating Grief, LLC