How Do You Respond When Your Caree says, “I’m Dying”?

Amy Bellis

How Do You Respond When Your Caree says, “I’m Dying”?

Amy Bellis
I remember the first time she said it. It was the middle of the night, and I was changing her clothes and stripping her bed for the second time that evening. She was extremely weak physically, though her mind was perfect. Up to this point, we both "pretended" that she would eventually be okay, so she really caught me off guard and I didn't know how to respond. I didn't negate what she said, but I failed to encourage her to talk about it.

This was my first time intensely caring for someone who experienced such a rapid decline in health. One Friday Mama Glo (my father-in-laws partner) was playing golf; on Sunday she was in the ER; on Wednesday she was diagnosed with Multiple Myeloma, Stage 3 (the highest stage for her disease) and would live only six more months. Of course, hindsight is 20/20 so now I have a wealth of information regarding that moment and what I could have done differently.

First of all, while that statement hits you, the family caregiver, with a boatload of emotions, this is one moment that is all about your caree. Take a deep breath; realize that your caree may be frightened and confused, and needs to share what he or she is feeling. It is an enormous gift to help someone die. I know how hard it is to contain your emotions in that moment, and later we will talk about how to take care of YOU at this time; but right now, it is important to have a plan for how you might respond in a manner that supports the dying.

Start with a hug. Validate the statement with something like "I'm sorry you are going through this. Do you want to talk about it?" Ask how you can best care for them at this time. Would they like to speak to a chaplain or rabbi? Would they like to speak with a grief counselor? It would most certainly be helpful to both of you if hospice could be involved at this time as the staff is trained in helping carees and their family members handle death and dying with grace and dignity.

Second, allow your caree to share their wishes with you. It is frequently our instinct to shush people when they start talking about their own death; try not to do this. Take notes. Write down what they say. If they tell you about a treasured piece of furniture that has been in the family for generations, you will want to remember the details later. You have a lot on your plate right now, so don't leave things to chance; take notes. Ask about memorial services; songs, psalms, flowers -- anything that will allow you to honor your caree most authentically.

Third, discuss your caree's end of life wishes. Now all of these things don't need to be discussed in one sitting. Bite-sized conversations are best. Like picking flowers in a garden, you will gather details of your loved one's wishes and be able to create a wonderful bouquet of memories and tributes when the time comes. The next time Mama Glo and I talked about her feelings, I asked if she wanted to see a Palliative Care Specialist, and she was very interested in exploring this option.

Palliative Care Specialists are a relatively new and welcome addition to patient care. According to the Mayo Clinic website, "Palliative care offers pain and symptom management and emotional and spiritual support when you face a chronic, debilitating or life-threatening illness. Palliative care specialists work with you, your family and your care team to help improve your quality of life during and after treatment for your specific medical concern. It is provided in tandem with life-prolonging therapies."

Lastly, as I said earlier, you must take care of your own emotions at this time. Most likely you will be by your caree's side until the end, and you want to be able to reflect on this time as a precious gift. Speak to family members or friends about your concerns and feelings. It is okay to cry -- even in front of your caree. Remember to say "I love you," "you are forgiven," "I'm sorry," and so on. Now is the time to prepare yourself as well as your caree for the inevitable.

Remember that when someone says "I think I'm dying," he or she may instinctively know something that the doctors do not, so honor the feelings. None of Mama Glo's doctors ever actually said out loud to her that she was dying, until we met with the Palliative Care Specialist. You and your caree deserve the peace and closure that comes from open and honest communication at this difficult time.