Here, There & Everywhere: Here (Part 1)
Guest post by Sean Szutka
In the time before their last days, it could be said that your loved one is both ‘Here’ and not. Mostly, they are “Here” – able to share moments with you, maybe laugh or cry or tell stories. But a part of them is already “There” too. During the end-of-life phase, our loved one will see things through different eyes and their concerns can shift dramatically.
When a person discovers that they are going to die, it can turn their world – and the world of their loved ones – upside-down. The person’s entire ecosystem shifts in anticipation of their end of life. It is a complicated time – charged with profound thoughts and feelings. Conflict can arise with our dying loved one, with our support team, or within ourselves. There may be unexpected developments, someone’s priorities may shift, or their communication style may change. Being able to recognize these changes and navigate these heightened interactions with grace and compassion can minimize stress, elevate meaning, and deepen our connections to our loved ones.
Emotional and Cognitive Shifts
The Dying Person
For the dying person, the realization that life's trajectory is now entirely foreseeable can hit with surprising force. In her 2006 study “The Hard Work of Living in the Face of Death,” Nessa Coyle called it “The Existential Slap.” The realization that life is ending may not hit right away, though. It can occur hours, weeks, even years later for some. This revelation can lead to a complex blend of emotions, including anger, depression, and despair. It is essential to understand, though, that this anxious state does not have to be permanent; in fact, it can be profoundly transformative and beneficial. As Jennie Dear writes for The Atlantic, the “Existential Slap” can create “deeper compassion for others and a greater appreciation for the life that remains.”
There is often a duality of existence for the dying person; being caught between fighting for life and planning for death. They may spend a lot of energy orienting themselves towards their illness, while at the same time wanting to prioritize their relationships. They will be building and relying on a support system and fighting to maintain self-agency and independence.
Your loved one may begin to experience moments as if in a dream state. Dreams from sleep, filled with reunions or meaningful experiences, might spill into wakefulness and can often be a source of comfort and solace. This is normal and can be an indication that the person is preparing for their next metaphorical “journey.” It is important to remember that, while the person may grapple with memory loss, cognitive impairment, and moments of confusion, these can sometimes be reactions to medication. Therefore, the most peaceful and compassionate approach to these moments – the moments when your loved one is “There,” – is to validate the truth of their experience and acknowledge that that may simply not be a part of what you are experiencing. If you continue to worry about their cognition or memory, consult your loved one’s General Practitioner or Specialist, key members of your support team.
You & Your Support Team
You, too, will begin to change. The awareness that time is now limited means that unaddressed legacy issues and past hurts within your relationships may begin to surface. You might become aware of new needs that you want addressed, while also feeling fear of – or guilt for – diverting attention away from your loved one.
You may find that your expectations of self or your support team also begin to shift. Your interactions with family and support team members may begin to evolve. For example, you and your support team may find yourself taking on different roles – The Strong One, The Organizer, The Caretaker – and conflict can arise when tasks either overlap or get missed. It can also show itself when you hold on to your expectations as “the right way” to think or behave.
You may become aware that you are increasingly hyper-focused and unable to attend to anything but the task at hand. Alternatively, you might find yourself struggling to focus on anything at all, lost in a world where every moment is top priority, and you are unable to decide where to put your energy. You may find that your emotional experience becomes hardened, and you are unable to express your feelings well or at all. Conversely, you may be so full of emotion that every moment feel like you could cry.
Physical Shifts
The Dying Person
As your loved one’s body begins to slow down, it will use up greater amounts of energy for tasks that were once quite simple. The dying person will tend to need more sleep and will be less active than they once were, because their body is working hard to fight their illness, because of the possible physical discomfort they might be experiencing, and because there may be potential side effects from their medications.
As the body's energy requirements shift, the person’s appetite will also decline; they may take less water or liquids. Temperature variations, manifested as fever or chills, may occur due to their particular illness, changing activity levels, etc. Skin, teeth, and hair will start to discolour. These are all normal signs that the body is in the end-of-life stage. It will also be important to be aware of possible mental, emotional, or physical reactions to medications and finding the right balance between often numerous medications can be key to maintaining your loved one’s comfort.
You & Your Support Team
Caring for your loved one at the end of their life will also be extremely taxing for you and your support team. Because of your own stress or worry, you may not want to leave your loved one’s side or be afraid of missing important moments with them, and consciously or unconsciously change your own sleep and energy patterns. You may find that your appetite or eating schedule changes to match the dying person’s and you may find that you, too, are experiencing physical discomfort. Tension, headaches, and other physical manifestations of your own experience may arise as your support your loved one.
Spiritual Shifts
The Dying Person
Fully recognizing that their time is coming to an end, the dying person may seek reconciliation – connecting with ex-partners or estranged family and friends. Confessions of their past errors may help to provide closure and peace as they prepare for their end-of-life. This can often be uncomfortable to hear and bring up your own pain as well. Finding compassion for your dying loved one, your support team, and yourself can make these moments opportunities to release pain and find greater peace during the end-of-life process.
As their life slows and their experience shifts, metaphor and symbolism may begin to play a more significant role in the dying person’s communication. You may find that your loved one’s religious or spiritual beliefs also start to shift. They may question their faith, wondering how this could be happening to them, or there could be a surge in belief, finding solace and peace in religion or spirituality where previously there was none. There may be increasing metaphysical content in what your loved one experiences or wishes to communicate. There is considerable anecdotal evidence that conversations with unseen others or talk of embarking on a journey is an indication that the dying person is preparing for their final days. For further reading on this, you could consider the book “Final Gifts” by Maggie Callanan and Patricia Kelley.
You & Your Support Team
As you navigate this profound journey with your loved one, finding and creating meaning becomes a vital aspect of the process. Spiritual and religious resources can be a wellspring of strength and solace although, just like your loved one, it's not uncommon to feel your own convictions difficult to maintain as you process your impending loss. You, too, may want to seek reconciliation or find a deeper connection with the dying person. Conversely, you may find great difficulty in talking about the past or struggles in your relationship, not wanting to bring the pain of the past into these difficult times.
The end of life for your loved one is the end of a part of your life too. Everyone involved will struggle, feel pain or sadness, experience fear, and live the duality of being both “Here” and “There.” The complex emotions and heightened awareness can shift everyone’s priorities, abilities, and desires. Each of you will have expectations of yourselves and the others around you. All of this is normal and okay.
The concept of Radical Acceptance (from Dialectical Behaviour Therapy) can offer a way to navigate all of the emotional, mental, physical, and spiritual difficulties that the end-of-life process can bring. When faced with a behaviour or response that makes you scared or angry or sad, take a moment to recognize that the situation is heightened and accept that “This is the way it is.” While it might not be what you would like or hope for, allowing for the other person to have their own experience and looking for grace and compassion with which to respond can make all the difference. If there is a medical development that requires a change of plans, you can remind yourself that no two end-of-life experiences are the same and accept that this is the way it will be for your dying loved one. This, too, is normal and okay.
Whenever you feel “not okay,” remember that you are allowed to struggle, and you are allowed to ask for help from your support team. In finding compassion for yourself, you will find a greater ability to find compassion for your dying loved one. If you need greater support than your current team can provide, you might consider adding to your team instead of getting angry or feeling overwhelmed. This could mean allowing friends or extended family into the end-of-life process or the addition of a Personal Support Worker or Registered Nurse. It could also mean releasing your expectations and changing your end-of-life plan and shifting from home to hospice or hospital.
Whatever occurs during your loved one’s end-of-life, it can be a time of great pain and sorrow as well as a time of greater connection and meaning. May you find all the magic of being “Here” with your loved one as long as you can, and may you find grace, meaning, and compassion as they transition to “There.”
Guest post by Sean Szutka
Sources
Dear, J. (2017). What It’s Like to Learn You’re Going to Die. The Atlantic Magazine
Coyle, N. (2006) The Hard Work of Living in the Face of Death. Journal of Pain and Symptom Managment
DerSarkissian, C. (2022). What to Expect When Your Loved One Is Dying. WebMD
Dear, J. What it Feels Like to Die (2016) The Atlantic Magazine