Now that you’ve caught your breath and before you begin to think about what to do, who to consult, how to try to navigate through this as an individual and as a family, let’s start with some theories about dying that are prevalent in our society. The most well-known is the one belonging to Dr. Elizabeth Kubler-Ross: The Five Stages of Dying. These are Denial, Anger, Bargaining, Depression and Acceptance. A quick web search will find you all that you want to know and more on this. Dr. Ira Byock also has a theory. He said there are four simple phrases needed for Dying Well (the name of one of his books): saying “Please forgive me”, “I forgive you”, “Thank you”, and “I love you”. What both of them (and many, many more theorists) emphasis is relationship. At the end of our lives, it all comes down to relationships. It is never too late to enhance them, repair them, strengthen them. While I appreciate theories in general and have come to see that many of them have real value as an outline for understanding, it all comes down to you. Are you willing to open your mind and your heart to be your authentic self — both internally and externally? Are you going to make your life, until you die, a time of avoidance and denial? Or are you willing to make your life, until you die, a time of growth for you and your loved ones?
In many cases, depending on your particular diagnosis, your body is already dictating what you can and cannot do and you’ve had to make adjustments to your life. Your mobility may be limited, your energy levels may be depleted, your ability to speak may be impaired, your level of independence may be reduced. You may be experiencing some level of pain and/or discomfort. With a terminal diagnosis comes lack of sleep, increased anxiety levels, loss or increase in appetite. All of these factors and more will affect your physical body. So…what to do?
1. Allow for a different routine. You may have always been on a certain schedule in terms of sleeping and eating and activity. Now that your body is changing, allow for additional changes. Eat when you’re hungry, not because it’s time for lunch. Take naps whenever you feel like it. Accept visitors when you’re up to it and decline them when you’re not. Go with the flow. Some days you will be able to do more and some days less.
2. Discuss your options for pain control with your medical professionals. Many people are afraid of certain medications (in many cases, it’s your family expressing fear, not you!) because of their reputation for addiction. Um…I don’t know how to say this…but addiction is not an issue at this point! If a medication will help to alleviate your pain, or breathing issues, etc., then try it. If you don’t like it, there are always other options. If medications aren’t your thing, then try relaxation exercises, meditation, deep breathing, essential oils, acupuncture, or any number of other holistic remedies.
3. Prepare your home for your ongoing and changing physical needs. You may need to get some equipment into the home to make things easier for you. For instance, maybe a walker or a commode or a shower chair would be helpful. Further, you want to look for obstacles that could make navigation more difficult such as rugs or large pieces of furniture. A few strategic moves can make a big difference.
4. Learn about your particular disease trajectory. Every diagnosis has a trajectory or progression of symptoms. This is harder than it sounds. It is challenging emotionally to look into your future. You don’t have to do this, but I have found over the years that my terminally ill clients are generally relieved of some anxiety when they know what is coming next. I would recommend talking to a medical professional, one who is comfortable discussing these things, rather than doing a broad internet search.
5. Decide where you would like to die. Home? Hospital? Nursing home? Hospice facility? There are advantages and disadvantages to each. Have a discussion with your closest loved ones, the ones who will be helping you to realize this wish. While your wishes are paramount during this process, it is also important to hear what your loved ones have to say about your choice of location.
As always, if you have any questions or concerns or would like to set up an appointment to discuss this further, please email me at firstname.lastname@example.org. And, as always, I welcome your comments and input.
Next time: the emotional matters related to a terminal diagnosis. This particular topic may take more than one entry!! Fair warning…
Copyright 2014 Lisa B. Wolfe, Translating Grief, LLC