Part 3 – YES, but
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. The practice of saying YES to challenges, exploring new life territory, and overcoming fear is part of living a full life. Counselors and wellness coaches tend to encourage saying YES to these things in order to bolster personal growth, stretch boundaries, and build resilience. Those living into their senior years and medically vulnerable people at any age may feel reluctant or unable to take that coaching and run with it. For people with serious or life-limiting illness, feeling eager or willing to take on new challenges doesn’t necessarily mean doing so will happen without a hitch. They may say YES, but, indicating a willingness toward the goal or activity, with stipulations, provisions, accommodations, or specific conditions. That doesn’t mean they lack confidence, are lazy, or willfully complicating the goal. It does mean that given their own lived experience, willingness is accompanied by the need for safety, dignity, and self-supportive measures. YES, but can mean, “I’m willing to do that, but I need to do it this way.”
When living with physical limitations or life-limiting illness, our biology can be unpredictable, making it difficult to plan for and easily achieve goals. This is also true for those living with certain mental health conditions such as Post Traumatic Stress Disorder (PTSD), anxiety, or depression. Thankfully, the body-mind connection or biopsychosocial paradigm has replaced the old biomedical paradigm that separates physical and mental health. More recently, health scientists are giving consideration to expanding the biopsychosocial paradigm to include a spiritual dimension. The practice of saying YES, but takes body, mind, emotions, and spiritual abilities into account.
Saying YES, but is a great way to practice healthy boundaries, but it’s not always easy. In fact, it can be quite complicated. Healthy humans take normal bodily functions for granted. Natural signals like thirst, hunger, or the need to eliminate provide steady guidelines for self-care. People living with chronic complex medical conditions often learn through trial and error about what the body needs in order to successfully handle daily life activities. When dealing with chronic conditions, feeling physically unwell, experiencing age-related limitations, or when approaching final days, bodily functions are often unpredictable. No one wants to experience an embarrassing elimination accident, have an uncontrollable need to vomit, or navigate a panic attack, fainting, vertigo, or anaphylaxis episode in public. Saying YES, but can set the stage for acceptable parameters that support the patient’s dignity and safety.
People need to be able to say YES, but, without fear of repercussions. In some cases, saying YES, but indicates a need for flexibility and/or permission to cancel, adjust, or reschedule plans. Make no mistake, it’s very difficult for a medically vulnerable person to change plans at the last minute or to ask for special accommodations. It can be hard to explain why the request is even needed. Admitting to being unwell, fatigued, or concerned about symptoms flaring can feel embarrassing, even shameful. This is especially true for people with invisible, chronic, or life-limiting illness. People in these circumstances often have a full-time job just managing their day-to-day activities. They may “look fine” on the outside, but struggle with physical symptoms that are not obvious to others. Hesitation to ask for what is needed may come from fear of judgment or criticism. Instead of asking for special accommodations, fear of disappointing others or becoming the subject of gossip or rumors may cause a patient to remain socially isolated.
Remaining in relationship with or providing care for someone with complex medical conditions requires patience, understanding, and empathy. When care recipients repeatedly cancel or reschedule planned activities, caregivers and others in the care circle can understandably become frustrated. Deep listening and asking good questions will help friends, family, and caregivers to avoid communication breakdowns with patients who tend to say YES, but. When changing the plan happens often, it may be that the patient is hesitant to talk about the real reason it’s happening (e.g., feeling weak, incontinent, depressed, unwell, ashamed, etc.). An advocate, social worker, or counselor may be needed to help patients and caregivers learn how to better communicate and work together to determine appropriate and effective accommodations, scheduling parameters, and effective back-up plans.
If YES, but is clearly an option, patients are more likely to participate in the things they enjoyed before accommodations were needed. Considerations for service animals, rescue medications (for seizure, syncope, severe allergy, panic attack, heart issues, etc.); reading glasses, hearing aids, American Sign Language (ASL) interpreter, incontinence supplies (pull-ups, protective underwear, adult briefs), special food or drink, cane, walker, wheelchair, scooter, and crutches are some examples of things that help care recipients experience improved quality of life as they undertake activities that healthy humans take for granted. The American’s Disability Act (ADA) can also help patients and caregivers to understand how reasonable accommodations help to ensure effective communication, mobility access, and equal care for all.
Even the best-made plans can go awry, so caregivers also need permission to say YES, but. Of course, a caregiver’s best practice is to make plans that can be successfully achieved via realistic parameters and clearly defined boundaries. But there are times when a caregiver wants to say YES, but life and the fates have other plans. For example: YES, I meant to finish researching a new healthcare provider for you, but my son had an unexpected early release from school. YES, I tried to pick up your prescription, but it was not available today. YES, I had every intention of taking you shopping today, but I’m feeling under the weather. All these YES, but incidents can be disappointing for care recipients and might result in caregivers feeling guilty. Instead of sinking into thoughts of guilt or failure, caregivers can offer sincere apologies alongside plans to reschedule or make alternate arrangements for missed activities. Honest, direct conversation as soon as possible after a change in plans helps to dispel disappointment and awkwardness for caregivers and recipients.
Finally, let’s explore what’s happening when hospice patients say YES, but. Dying is a very personal experience, and most of us will only die once. Unless we are resuscitated back from the brink (as happens in a near-death-experience), reaching the last breath of life presents an entirely new, uniquely personal experience. When end-of-life approaches, physical, psychological, emotional, and social norms for living life are in a transformational process. There is a natural inclination to draw inward, leaning into spiritual or secular practices that instill peace and calming energy for the body, mind, and emotions. Any acts of exertion may cause great discomfort. Yet hospice patients can have a strong desire to continue living life as fully as possible, even in the face of their waning energy and discomfort.
A majority of hospice patients prefer to die at home, in familiar surroundings with the ability to interact with loved ones as much as possible. Friend and family in-home caregivers can do their best to meet patient needs, but calling on professional assistance from the hospice team is perfectly appropriate. In the U.S., Medicare covers a variety of hospice services including medication, equipment, home visits and phone support from doctors, nurses, nursing or personal care assistants, chaplaincy, bereavement counselors, and social workers. They are there to provide medical oversight and compassionate, palliative care for the patient. Additionally, the team offers education and support to in-home caregivers so they can create the most comfortable environment possible for the patient. While the hospice team is always on call to answer questions, they do not provide 24/7 presence. Family and friend caregivers provide direct care for the patient’s hydration, nutrition, hygiene, medication, and all comfort needs.
When a hospice patient says YES, but it indicates their willingness to participate in meaningful conversations and/or activities while affirming that accommodations will be necessary. Given that it is the patient’s first time dying, they may not be able to clearly articulate what kind of accommodations they need. The patient may be able to verbally communicate what they need (e.g., Yes, but I will need to have a wheelchair. Yes, but she can only visit for fifteen minutes. Yes, but I don’t want to talk about that.). Try to meet the patient’s needs whether they are straight forward or complicated. Calling on the hospice team to help for more complicated requests is perfectly appropriate.
If a patient is nonverbal, recognizing signs of discomfort or pain can help caregivers to explore what kind of supportive care or accommodation is needed to provide comfort. In-home caregivers for hospice patients should not hesitate to call on the hospice team for issues arising from a patient’s suffering with physical pain, breathlessness, nausea, incontinence, constipation, seizures, emotional, mental, or spiritual discomfort. It helps to remember that, for hospice patients, saying YES, but honors life-limiting circumstances, while they embrace the life that remains. Part 4 of “Y” is for YES explores the concept of YES, but maybe NO.