Part 4 – YES, but maybe NO
In the ABC’s for living well, this four-part series for the letter “Y” explores various ways in which YES can carry multiple, nuanced messages. Socializing, flourishing on the job, caring for children or companion animals, and contributing in other meaningful ways to friends, family, colleagues, or community are natural human adult pursuits. When living with a serious chronic illness, the desire to participate in normal daily life activities remains strong. But diminished well-being for any reason can get in the way of saying YES to the very things that define us. This is especially true for those living into their senior years, the medically vulnerable, and/or those recovering from cancer and cancer treatment, invasive surgery, serious medical events such as heart attack or stroke, or life-threatening illnesses, like COVID-19, measles, or pneumonia. It is also true for patients with chronic conditions such as COPD, multiple sclerosis, lupus, Crohn’s disease, etc.; for those receiving palliative care; and for hospice patients.
In those scenarios, the desire to say YES to all the things that were part of “life before” (the diagnosis, the surgery, the new frailty, the illness, etc.) remains intact, but it may not be physically possible to bring those desires into reality without great sacrifice and suffering. Then the reality becomes, YES, maybe I can do that. For example, making breakfast for the family might be something that happened every day without fail in life before. But the mom undergoing chemotherapy and struggling with severe nausea and vomiting may be physically unable to keep up with daily breakfast-making. Her emphatic YES is eclipsed by her biology demanding a definite NO. A patient in hospice care may say YES to receiving out-of-town visitors, but when visitors arrive, they may find the patient deeply asleep. So that YES, is in truth, NO.
It is important to realize that the patient saying YES when maybe or NO is the reality, is not an intentional misspeak. Saying YES to participating in familiar or normal activities offers the patient a bit of hope for business as usual in times of struggle. During recovery days, serious or chronic illness, and at end of life, personal dignity can feel as if it’s disappearing. Physical ability and all-around agency may be waning as uncooperative biology presents uncontrollable circumstances.
We humans generally do not enjoy losing control. We tend to prefer autonomy, independence, and freedom. When feeling unwell or at end of life, skillful denial and/or making pretend everything is fine are popular strategies to meet the moment. Another strategy is to forcefully resist and continue doing those familiar activities until it becomes physically impossible to do so. Humans are just wired this way. We enjoy life being at least somewhat controllable and predictable. When things become seriously unpredictable, we don’t like it. The truth is that life is uncertain and unpredictable. Saying YES instead of maybe or NO offers a modicum of predictability, a whisper of control, and can feel like a sincere affirmation that the goal is attainable.
Caregivers can also find themselves saying YES and meaning maybe or NO as they face difficult choices to balance personal life with caring for others. The very last thing a caregiver wants to do is to promise something to a care recipient (especially a hospice patient) and then not deliver. But even the most robust, healthy caregivers can become overwhelmed and fatigued with the rigors of providing continual care. They must prioritize the recipients’ needs for safety, security, and support, while maintaining their own mental health and self-care. Caregivers may say YES instead of maybe or NO, with the intention of offering what they hope to provide instead of what they can realistically provide.
This happens because sometimes caregivers imagine they have superpowers with the ability to multi-task effectively despite other pressing matters. Saying YES when it means maybe or NO comes from the heart, and is a way that caregivers express their earnest intention to provide service. Life being what it is (unpredictable), a caregiver’s every good intention to follow through with promises can sometimes hit roadblocks. Naturally, caregivers and recipients want to avoid disappointment and prioritize activities, communications, and positive experiences. But caregivers can fall ill or be called to handle other responsibilities. Some circumstances will require changing care provision plans, but repeatedly (consciously or unconsciously) saying YES and meaning maybe or NO can impair the caregiver/recipient relationship.
When caregivers fail to keep agreements, recipients can experience feelings of disappointment, resentment, or frustration. Caregivers are left with thoughts of failure and may feel embarrassed or guilty about not following through. To avoid that pattern, prefacing a plan with YES, maybe (that can happen) sets the plan’s intention in place, alongside the possibility that it is subject to change. Comprehensive planning and open communication between caregivers and recipients is key to avoiding relationship breakdowns. Setting clear boundaries and realistic activity schedules, having back-up plans for last-minute care provision glitches, and arranging for respite care (if needed), are additional steps to help to avoid these issues. The Area Agency on Aging (AAA) is a useful resource helping caregivers and the elders they care for to develop and maintain balanced relationships.
On the plus side, I’ve noticed that failure to execute planned care activities can have numerous silver linings. Failed plans offer an opportunity for caregivers and recipients to work together for creative solutions; a time to share intentions, re-envision, and re-affirm desired results. In fact, failed plans often open a doorway for something more profound and almost magical. The “failure” itself offers a gentle reminder that we are but humble organisms in an expansive universe; we cannot always get what we want. But, like the song says, if we try sometimes, we can get what we need. When planned activities fail to launch, we need grace. Giving grace to ourselves or to others involves extending mercy, kindness, and compassion. If YES turns out to be maybe (or NO), blaming or shaming oneself, the patient, caregiver, friend, or family member is not useful. We can instead be willing to practice flexibility, curiosity, patience, forgiveness, and good humor.
As end-of-life approaches, when patients say YES, it can mean maybe or NO. Saying YES affirms the ability to live their remaining life with agency and autonomy. They may say YES to their favorite foods, drinks, conversation, or activities. These are natural and enjoyable things that one would want to continue as long as possible. As biological functions naturally retreat, there comes a time when enjoyable things in life become uncomfortable, burdensome, and then impossible. The YES (maybe I can) indicates willingness to continue living and enjoying life.
Sharing meals, conversing with loved ones, going to the park or a movie can appeal to hospice patients while they still have the energy and ability to do so. As death draws nearer, they are likely to be less interested in those activities and may decline invitations for doing things they know will leave them feeling more depleted. They may say NO to receiving visitors or participating in conversations with their closest loved ones. Their care circle may grow smaller as they move into active dying. The need for more quiet introspective time, less stimulation, conversation, and activity indicates that the patient is letting go of earthly life. Giving oneself permission to let go of those familiar things in a patient’s final days is an act of self-compassion, courage, grace, and love.
In final days, our relationship with food, eating, and drinking changes dramatically. It is universally acknowledged that sharing food and drink with others is also a way to share our love and show that we care. Food is a source of warmth, connection, and nurturing. Meals shared with family and friends are often the backdrop for social interactions and celebrations of all kinds. We make chicken soup or offer ginger ale and crackers to loved ones when they fall ill. We bake breads and cookies to share as holiday gifts. Food and love seem to go hand in hand. However, as patients enter final days, caregivers need not encourage or force eating or drinking. Decreased appetite and thirst are natural conditions as bodily functions slow down; consuming food or fluids can be physically harmful and emotionally distressing. The patient may say YES to their favorite slice of apple pie, then take only a small bite. The taste is enough to reconnect them with a pleasant sensation and memories of sharing love.
The hospice patient saying YES and meaning maybe orNO is an act of giving oneself grace. Some patients will remain verbal and can even be animated or gregarious in their last days and hours. Some will be quiet or move into a deep sleep or coma. Follow the patient’s lead in order to meet their needs for conversation, silence, laughter, tears, and final gratitude, amends, or goodbyes. If it feels right, caregivers can also offer permission or assurance that it is okay for the patient to let go of life. (It’s okay to go whenever you are ready. I’ll always love and remember you. I hope we will meet again.)
In most hospice circumstances, the moment of death is unpredictable. There may be a time when the hospice patient says, YES maybe (I can stay a while longer), but the reality is NO (I cannot). Caregivers need not take retreating behavior or the moment of death personally. While it is very difficult to accept the final moment, they can honor their loved one’s journey away from life and share love by offering a peaceful supportive presence, holding a hand, or holding space. In that final moment, allowing for and accepting NO (I cannot stay a while longer) is a gift of grace between caregivers and the loved one transitioning.