By: Stephen Scherer, Ph.D.
Clinical Psychologist
Caring for a loved one nearing the end of life is an emotionally charged and complex experience. Navigating physical needs, emotional turmoil, and spiritual questions, all while managing your own grief and well-being can be incredibly overwhelming. In this post, we explore aspects of the process to keep in mind when supporting a loved one.
Fulfilling a Loved One’s Physical Needs:
Comfort: Ensure pain management and symptom are well controlled and addressed by medical professionals. Create a calm, comfortable environment, adjusting temperature, lighting, and noise levels based on your loved one’s preference.
Practical assistance: Help with basic needs like eating, drinking, using the restroom, and personal hygiene. Consider involving home care or hospice services for additional support especially if you struggle with helping your loved one with these tasks. If your loved one is a fall risk or it has been advised that they not leave their bed without medical assistance, you can gently place your hand on their shoulder to comfort them and help them settle back into a comfortable state without telling them to not get up.
Communication is crucial: Talk openly about physical challenges and preferences. Respect their wishes regarding treatment options and interventions and be sure to keep them informed about any changes in care, as appropriate.
Addressing a Loved One’s Emotional Needs:
Empathy and presence: Validate their emotions, fears, and anxieties. Be present, listen actively, and offer emotional support without judgment. Don’t fall into the trap of offering false reassurances or promises.
Open, honest communication: Encourage open communication and give them a space to share their thoughts, feelings, and concerns about any unfinished business they have. If they wish to discuss sensitive topics like death, afterlife, or regrets, create a safe space for these conversations and if they are too challenging for you, seek out assistance from a professional who specializes in end-of-life care.
Professional support: You may also consider individual or family therapy to process emotions, learn coping mechanisms, and navigate challenging communication dynamics that may arise during the process. This is an incredibly stressful and emotionally challenging situation and even if you are a sole caretaker, you can take time to get support for yourself.
Supporting a Loved One’s Spiritual Needs:
Respect individual beliefs: Explore their spiritual or religious beliefs and preferences regarding death and what comes afterward. Accommodate any spiritual practices or rituals they find comforting and request guidance and support from spiritual or religious leaders.
Connection and meaning: Help them connect with their faith community, if desired, or engage in activities that bring them meaning and peace.
Finding closure: Facilitate opportunities for forgiveness, reconciliation, and saying goodbyes, if appropriate. Do keep in mind that this is probably not the time to bring up past hurts you experienced from the person, unless you have been counseled to do so. Each situation is different.
What if my loved one can’t communicate?
It can be incredibly challenging and anxiety provoking when a loved one is unable to communicate and you are responsible for their comfort and care. This is especially true when an end-of-life situation has arisen without time to plan or learn what your loved one’s wishes are and you may feel a sense desperation or worry about making the “right” decisions for them. I’ve had to navigate a situation like this and there are a few things I learned in my process that I found to be incredibly helpful:
Consider what you believe they would want for themselves and reflect on past conversations you may have had with them regarding end-of-life.
Discuss with other family members what their thoughts are and consult with medical professionals if you are feeling unsure about a decision. Be sure to express your concerns openly and don't be afraid to ask questions about any step in the process.
Understand the stages of dying. People will experience different things at different phases during end of life. Make sure you ask questions that will help you learn what to expect along the way. As your loved one progresses their needs will change and so will yours.
Take note of physiological signs of distress - these include facial grimacing, increased breathing and heart rate, elevation in blood pressure, restlessness or squirming, and audible groans or noises. These signs alone may not be enough to determine if a loved one is uncomfortable; however, you can use them as a signal that they may need a medical expert to check on them and adjust their care.
Taking Care of Yourself:
End of life care is a physically, mentally, emotionally, and spiritually demanding process and although the ability to care for someone at the end of their life is a privilege, it can feel overwhelmingly burdensome. You need to take time for yourself throughout the day, even just a few moments at a time.
Acknowledge your grief: It's natural to grieve during this process. Allow yourself to express your emotions healthily, like journaling, talking to a trusted friend, or seeking professional support.
Maintain self-care: Prioritize your overall well-being. Eat balanced meals, get enough sleep, exercise regularly, and engage in activities you enjoy. Don't neglect your own medical or mental health needs.
Seek support: Talk to friends, family, support groups, or therapists to share your burdens and receive emotional encouragement. Joining a grief support group can connect you with others experiencing similar challenges. If you find that at the end of your loved one’s life that you experience a sense of relief, this is normal and isn’t something you need to judge yourself for.
Remember:
Caring for a loved one at the end of life is a privilege and a challenge. By prioritizing their needs while attending to your own, you can navigate this journey with love, compassion, and resilience.
There's no "right" way to navigate this journey. Lean on support systems, religious leaders or spiritual guides, and prioritize open communication with your loved one and healthcare professionals.
Each person's experience is unique. Their physical, emotional, and spiritual needs will evolve. Be flexible and adapt your care-giving approach as needed.
You are not alone. Many resources and support services are available to help you through this challenging time. Seek them out and utilize them for your own well-being and the well-being of your loved one.
Note: This blog post is intended for informational purposes and does not substitute for professional medical or psychological advice. Always consult with qualified healthcare professionals for personalized guidance.
Additional Resources:
National Hospice and Palliative Care Organization: https://www.nhpco.org/
Hospice Foundation of America: https://hospicefoundation.org/Grief-(1)/Support-Groups
National Institute on Aging: https://www.nia.nih.gov/health/end-life
Mental Health .gov: https://www.mentalhealth.gov/
Compassionate Friends Network: https://www.compassionatefriends.org/
International End-Of-Life Doula Association: https://inelda.org/
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