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How to Manage When a Loved One Is Dying

3. Share with them, now, how you feel about them.

We fear most the news that a loved one is dying. From terminal cancer diagnoses to long-haul battles with dementia and Alzheimer’s disease, walking with a loved one through the dying process is full of uncertainty, grief, and challenges. This news forces us not only to deal with the impending loss of someone we love but also to face the hard and uncertain period between diagnosis and death. Between hope and letting go. In this space of the in-between, caregivers and loved ones often face grueling schedules in and out of hospitals, the overwhelming challenge of seeing a loved one decline, and the anticipation of the grief of losing that person. Mixed in with all of this is the question: “What do I do now?”

My research and work focus on helping patients with advanced illness and their loved ones walk through the season referred to as the end of life. End of life refers to the final days, weeks, and months a patient and their loved one face before the patient dies, often after receiving a terminal prognosis.

The road to receiving, and ultimately accepting, a terminal diagnosis of a loved one is long and winding. Our minds are programmed to avoid the topic of death because it’s threatening to our minds. Decades of research have demonstrated that simply being reminded that you will die creates a psychological threat and what is referred to as death anxiety.

Even getting to the point of accepting a loved one is dying takes time and a lot of bravery. But once you move into the space of acceptance, or at least acknowledgment, it can create the opportunity to cherish these final moments with a loved one while also receiving support for the overwhelming feelings of uncertainty and grief that accompany this loss.

How do we spend this time well? Savoring every moment is hard; many of the moments are unsavory as you watch death. There is a body of research that indicates what matters most at the end of life for both patients and their loved ones.

  1. Reimagine the classic bucket list. Perhaps the most common and first thing people think of when they find out their loved one is dying is to create a bucket list. The trip to Europe together. Often, patients are not physically capable. Moreover, they often don’t want to do them. Check with your loved one and ask if there’s anything they really want to do, with no expectations or pressure. If a patient is in the early stages of dementia, they may want to complete a major bucket item. If, however, they are very near the end of life and are in severe pain, limited capacity, or other limitations, they may rather spend time at the family’s nearby lake house. Check with the patient and reimagine the bucket list. You can do this successfully by creating a space for them to do anything they want and not feel pressured into doing too much. There are bucket items that are designed for terminally ill patients such as engaging in cultural experiences locally. Watching old home videos while holding hands can be a simple meaningful moment for the dying.
  2. Record moments and conversations with them. Take some time to sit down with that person, and if they are able, recount old memories, favorite moments, favorite travels, funniest memories, memories of weddings or births, or other life events. If they are no longer able to engage in these conversations, because of a progressive illness like dementia or Alzheimer’s, you can use Anne Basting’s Beautiful Questions, which are not centered on past memories. What we most often miss when our loved one is gone is the sound of their voice, their wisdom, their laugh, or the beautiful memories we shared together. This exercise not only allows you to connect but also creates a lasting archived imprint.
  3. Share with them how you feel about them. One of the most common regrets people have, especially when someone is gone, is being too afraid to express their feelings. Whether it's reconciliation that is needed or telling them how much you love them and appreciate them. Expressing your feelings can create closure and ensure that your loved one knows what they mean to you. And if reconciliation is needed, the deathbed is often a place to create that space. Often, people feel these vulnerable moments might scare the patient, often the patient knows they are dying and is looking for this closure. In fact, I continue to witness multiple accounts of hospice nurses saying that terminally ill patients on their deathbed wait until their son, daughter, or another loved one comes to say goodbye to them before letting go. This consistent theme seems to indicate that patients are looking for this closure too.
  4. Take care of yourself. Perhaps the biggest oversight of people walking through these final stages is forgetting to take care of themselves. This is particularly true if you are providing care for your loved one directly. Caring for a dying patient is an all-consuming task, but it requires much mental, physical, and spiritual energy. Without creating moments to care for yourself, you are at risk of burning out. If possible, create small moments to care for yourself whether that’s through meditation, journaling, or listening to your favorite music. Often, there are several moments throughout the day when your loved one is sleeping or resting. There is an overwhelming urge is to stay by their bedside the entire time, but if you can step out for a small break, it can help fuel you. If possible, invite others to share in the workload.
  5. Receive support for anticipatory grief. While most of us are familiar with grief after the loss of a loved one, few of us expect to experience grief before they die. However, this is common. With anticipatory grief, you are often anticipating many losses: loss of a loved one, loss of a relationship, and loss of a family role. In short, you are facing the loss of the future you planned to live with that person. These are immense and painful to process. And while you can often process the finality of death when grieving after someone dies, anticipatory grief holds you in a confusing and exhausting space of having hope but also letting go. This is exhausting, leaving many confused about how to cope. Reach out for support and help in this process, whether that’s through family, friends, mental health professionals, or the hospice and palliative care teams working with your loved one as they die.
  6. Prepare yourself for the actual death. This step may be the hardest, but understanding what is likely to come near death can help immensely in transitioning to the final days of your loved one’s life. Prior research indicates that being prepared for the death of a loved one is one of the most important factors in determining how you cope. Often, your loved one will become more sleepy, eat and drink less, and overall withdraw more. They may experience more pain, breathing issues, and sometimes confusion. This can be a painful transition, as it becomes more challenging to spend engaging and meaningful time with them. To prepare for this, it can be helpful to reach out for support from those around you, emotional or practical or spiritual support. Friend networks and family as well as supportive services like hospice care and social work can help you along the way.

Facebook image: smolaw/Shutterstock

References

Two Decades of Terror Management Theory: A Meta-Analysis of Mortality Salience Research. Personality and Social Psychology Review. January 2010

Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review, March 2016.

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