Here you are, knee-deep in the most awful situation of your life, and you’re being asked to make major decisions every day. Life and death decisions. When you’re exhausted and emotionally drained. It’s ironic, but it is desperately important.
Try as you might to stay in the moment and to enjoy every second you have with your loved one, chances are, your mind sometimes strays to that dreadful day when you will face life without them. Perhaps you are imagining the day that you’ll first come home to an empty house, or having to make that awful phone call to another family member. This is a normal experience called Anticipatory Grief. It’s exactly what it sounds like: grieving for something before it happens, and it is completely normal. You may want to share this experience with your loved one. Chances are, they will understand, and may even be experiencing the same thing. You may also want to reach out to a chaplain during this time. Chaplains can help you process your anticipatory grief while also keeping your focus on the present.
You might be imagining that soap opera bedside end of life scene, where everyone is quietly crying. But that may be the last thing you feel like doing. You may be boiling with outrage. Believe it or not, that’s grief too. You have every right to be angry that a person you love is facing illness and the end of their life. You might be angry at God, at the universe, at everyone with healthy family members, even at the person themselves for leaving you. None of this makes you a monster, and all of it is normal. You might find it helpful to talk to another family member about this feeling (probably they’re experiencing it too, but are too afraid to voice it). Or you may feel more comfortable speaking to a chaplain. Chaplains can help you strategize for what to do with your anger so that it doesn’t consume you.
One second, you’re crying, and the next, you’re…laughing?! End of life is often filled with reminiscing. Families gather, and stories start coming out. Before long, although you’re all filled with sadness, you’re remembering the time that mom sang karaoke at the church fair, or the ridiculous straw hat dad used to wear to embarrass the kids, and you’re roaring with laughter. It feels like sacrilege, to be laughing at such a sad time, but it’s completely normal. Life is complicated; loss is complicated. We are often happy and sad at the same time. You might even feel relieved at someone’s death – happy that their suffering is coming to an end – even while you’re sad and outraged.
You may not have much experience with death and dying. If you’re close enough to visit the person, you probably feel uncertain about what you should be doing while you’re there. Do you talk to them? Do you touch them? Should you even visit? Or should you stay outside? There aren’t any universal answers to these questions. The best guide for what to do is your relationship with the person. If you usually greeted your grandmother with a hug and a kiss on the cheek, do that, if you’re able. If your sister loved classical music more than anything in the world, considering playing some for her. If your family tended to be quiet, don’t pressure yourselves to fill the silence with empty chatter. If your family tends to talk and laugh jovially, don’t feel the need to stifle yourselves. If you’re in a hospital or hospice, as the medical staff how to look for signs of discomfort in your loved one so that you can notice whether the noise or touch is causing them pain.
Many religions include rituals that can or should be done at the end of life. These can be deeply meaningful, but should be done only with consideration for the person’s wishes. If he or she is able to communicate, ask permission before summoning a religious leader. If the person has written advance directives, consult them to see what they’ve stated about rituals they would like performed. If you are of a different religion from the person, please only perform your religious rituals if you are absolutely certain that the person would find this touching and meaningful. Religious rites should never be forced upon a person at the end of life. If you are feeling conflicted about how to navigate this dilemma, please consult a chaplain. Chaplains are trained in interfaith ministry, and can be outstanding resources to you during this time.
People might suggest that you tell your loved one that it’s ok for them to go. You, on the other hand, may feel it is not at all ok for them to go, and that may be the last thing that you want to say. While this statement may not be helpful to you (and people are likely to say many, many unhelpful things to you during this time), you can know, at least, that they are saying it out of concern for your loved one. While you may not feel comfortable telling your loved one that it’s “ok” for them to go, you may find it helpful to tell them that they will not be forgotten. You might want to tell them about the legacy they will leave: lessons they’ve taught you, ways their influence will remain in the family, things that you will tell your children, and memories you will never forget. You might thank the person for their role in your life. Or you may not feel comfortable doing any of these things. Again, let your history and relationship with the person be your guide.
Invariably, at the end of life, terrible and difficult decisions must be made. And rarely will it seem more important that you make the right decision. In these moments, whatever your history has been with the person – however complicated your relationship has been – you want to do right by them. But it can seem overwhelming to do that. It often seems as though you are having to choose between a bad option and an equally bad option. It may seem as though a terrible weight of responsibility has been foisted upon you. Now, more than ever, is a time to seek counsel. Consider what you know of the person. If they have advance directives, read them. Take some time to think about who this person was in life. What was important to them, what core values they held. If the person was religious, even if you do not share their religion, consult a religious leader (preferably one who knew they person well) for their counsel. For yourself, you might find it helpful to talk all this through with a Chaplain. Chaplains are well-versed in both religious traditions and the medical world, and can help you sort through your options. They can also help you formulate questions to get more information from your healthcare team.
One option that might be presented is that of hospice This may be a terrifying prospect for you, especially if you’re not familiar with the term. While individual programs vary slightly, generally speaking, hospice is a form of palliative care for someone whose illness is terminal (meaning that its focus is on pain control and symptom management) that is offered wherever the patient lives. In many cases, it is a way for a dying person to go home to a familiar and comfortable environment, rather than having to remain in the hospital. Many, many people desire to die peacefully at home, but not everyone. You should again weigh everything you know about the person, seek counsel from religious leaders or others who know the person well, and talk the options through. Often, hospice is a huge relief: getting you out of the chaos of the hospital environment, to a place where you can sit in comfort, be surrounded by your pets, your friends, your photographs – whatever comforts you most.
The word “bereavement” refers to a period of time during which one grieves a loss. Often, it seems like a time-limited thing, as in “bereavement leave” from work. In reality, your grief will start long before your loved one’s death, and continue on well beyond your two days’ bereavement leave. Religious traditions and social communities often have rituals and guidance about how to navigate bereavement. You may attend services, sit shiva, weep, or pray. You may light candles, fast, cut your hair, or tear your clothes. You may find comfort in friends, or you may wish to be alone. You may, again, find it helpful to talk with a chaplain or another trusted counselor or do some reading about grief.
As you plan ahead, we offer you the following resources to aid you in your journey:
PREPARE – the free, new interactive, easy-to-use, advance care planning website that shows people, through videos and a step-by-step process, how to have the conversation about what matters most in life and how to prepare for medical decision-making.
Caring Connections – for Advance Directives information including for every state.
Five Wishes – talking about and planning for care at the end of life.
Legal Guide for the Seriously Ill – Seven Key Steps to Get Your Affairs in Order published by the American Bar Association on Law and Aging for the National Hospice and Palliative Care Organization.