Walk with me to the water when it comes my time.
What we say will not matter, just keep your hand in mine.
I’ll cross the water by myself, I know that’s what I must do.
But the chilling sting won’t be felt because I’ve walked with you.
–Nellie Keller
The goal of accompanying someone on their end-of-life journey is to create a sacred and safe space for them to be able to release from their body. There is a distinct difference between caring for someone who will get well and recover and for someone who is dying.
The process of dying is highly individual, and the following information is a guideline only. There is no right/wrong way to be with someone dying or of the dying process itself. If you can manage to stay open (going with the flow, not trying to control outcomes) then you may be able to let the experience be guided by your own intuition. This involves deep reflection and listening with your heart.
Every person is different, depending on their age and disease trajectory. Like the stages of labour during birth, there are somewhat predictable stages as we release into dying. To help alleviate some of the fear & anxiety that may show up when we don’t understand the unknown, take note of the following changes that may occur.
MIND: Emotionally, the level of shock or degree of dissociation when faced with a terminal diagnosis eventually morphs into a degree of acceptance. The dying person will typically have done their own self-reflection and life review. Elisabeth Kubler-Ross described the stages at end of life as: Denial, Anger, Bargaining, Depression, and Acceptance. Ira Byock, a palliative care expert, encourages four phrases to help transition our relationships at end of life. He invites us to use these simple words that may be necessary to help mend the feelings around past troubles/issues: Please forgive me. I forgive you. Thank you. I love you.
1 to 3 months: You will notice decreased consciousness and a gradual separation of your person’s interest in the outside world (news, TV, newspapers, etc.) and more time spent withdrawing and sleeping. They are preparing for their final journey into the unknown, often comforted by their beliefs such as loved ones will meet them on the other side, or whatever they have learned through religious or spiritual teachings. As outer awareness declines, speak slowly & clearly to avoid confusion and allow for understanding. Of note, some people lose their ability to communicate verbally which may be frustrating for them.
BODY: Barbara Karnes, R.N., describes our bodies as being like an eggshell surrounding our life force inside. Food has such a cultural significance in our lives, it’s difficult to withhold nourishment from those we love. As the need for calories decreases and the digestive system shuts down, there is more room for gentle loving energy, soft touch, and soft-spoken words. Consider reading to your person, from books or passages you feel will comfort them. It is said that hearing is the final sense to go, so continue to speak to your loved one knowing they hear you, without being able to respond. Hydration needs also decrease and elimination output (urine/bowel) will slow down.
1 to 2 weeks: Confusion/Disorientation occurs as sleeping increases although it is still possible to wake your person for brief periods. You may notice your loved one talking about people, places, and events that have happened in the past, as their focus is changing from this world to the next. Many believe that their ancestors who have passed before them return to accompany them. Do not be alarmed by your loved one speaking to their dead parents or friends/family. Maggie Callanan & Patricia Kelley, in their book Final Gifts, teach that some hospice patients appear to prepare for their final journey. Patients may also see non-physical beings and perceive space and time outside of our 3-D understanding. Don’t worry or become concerned with correcting your person about what is currently happening around them, rather join them in their own reality as they prepare to leave this life.
Days before dying: Physically, your loved one’s body will begin to shut down, often indicated by lowered blood pressure, pulse rate, and a fluctuation in body temperature, with the extremities becoming colder and bluish in colour as blood circulation lessens. Temperature may alternately increase with skin redness and perspiration. Breathing may fluctuate between rapid respirations to a decreased number of breaths per minute. Fluid congestion may increase, sometimes resulting in a rattling sound in the lungs and throat. This is not uncomfortable for the person, but the healthcare practitioners will monitor breathing and whether appropriate medication or treatment may be warranted.
Pain Management at end of life is carefully monitored on a daily, then hourly, basis. It is helpful to note that pain medication is most effective when it is continuously administered rather than waiting for pain to increase and the subsequent necessity for meds to increase. Although a strong dose of medication may be given right before a person dies, keep in mind it is the disease process or body shutting down that is contributing to the death, not the fact that pain medications were given just prior.
SPIRIT/SOUL: Energetically, our bodies begin to shut down, depending on the disease process. Near Death Experiences (NDE’s) have given us a window into what to expect on the “other side” and palliative care specialists have been able to map the similarities between how people die. Again, depending on your person’s beliefs and personality, they may engage in some ‘other-worldly’ types of experiences. Now is the time to call in the religious leader for your family or you may wish to say a prayer or meditation to help the soul prepare to leave this life. Speaking in a calm reassuring way is helpful. NOTE about religion/spirituality: If your community of family and friends doesn’t include a religious leader, consider this – perhaps our consciousness/soul/life-force energy is returning to where it was waiting before we were born into our body; before we joined our families in the physical form.
SITTING VIGIL (literally staying around the dying person’s bed)
Every time you leave your person’s bedside, even for a few minutes, say goodbye. There is an increasing amount of research being done on consciousness and dying. This research suggests a person decides the timing of when they leave their body, and they may wish to do so alone or with very few people near them. If perhaps you step away and your person dies, try not to blame yourself for not being there, as this is a personal and intimate act that your loved one may want to do in their own way (alone).
Set up the physical space where your person is dying to include things that are special and meaningful, including soft lighting and electronic candles. Do they love big band music, disco, or peaceful waterfalls? Might the younger kids in the family be able to draw some pictures or write poetry/stories? Make this a comfortable and gentle loving space. Generally speaking, kids are fine to attend the vigil of a family member or friend dying as this allows children to be a part of the process and say goodbye, and to learn that dying is a natural part of living. People in palliative/end of life care may want to know that they will be missed and that you will carry on their legacy. If it feels right to you, let your person know you will miss them and that although you don’t wish it, it’s okay to go (phrase this in a way that feels authentic for you … sometimes that feels awkward and that’s okay too).
TERMINAL LUCIDITY or END OF LIFE RALLYING BEFORE DEATH
When a dying person suddenly becomes more aware and appears to stabilize (perhaps eating or talking more) this may be taken as a hopeful sign by friends and family. Hospice professionals have termed this type of turnaround in circumstances as ‘terminal lucidity’. It may feel confusing as you have prepared yourself for the person dying, then this spark of recognition and clarity is evident. There is no way to predict how long this surge in energy will last, as each person is unique in the way they live and in the way they die. You may choose to see this rally as a gift, a short moment in time when connecting with your loved one is possible, before they leave on their final journey.
Ask questions of your person’s healthcare team. If you aren’t clear, ask again or ask another medical team member. You and your family are also members of the care team, so stay mindful of the amount of sleep, nutrition and water you need while you are on this path together.
Michelle Suzanne Scott, RSSW #820505 April 2021
More info on palliative and end-of-life care may be found at: Hospice Palliative Care Ontario hpco.ca , virtualhospice.ca, thevitalbeat.ca , & Barbara Karnes, RN on YouTube, The Centre for Sacred Deathcare (Sarah Kerr, Soul Passages) http://centre for sacred death care.