Anticipatory Grief

Grief and loss doesn't start after your loved one has died. It begins when the realization becomes real that their death is approaching, whether far in the future from a long-term illness, or when a death occurs with little notice. In the ER, the ICU, at home… when that realization happens grief begins. It’s called “anticipatory grief” but, in reality, it’s grief, with all its emotion and sadness.

In the time before death occurs, there are things that need to be considered, both from the loved one’s perspective and to address your concerns. This will address the dying person’s needs. I’ll follow it with a blog about your needs as you support your loved one.

What Does A Dying Person Need at that point?

·       The need to “settle up” with the people so as to die in peace, with them and with myself.

Settling up emotional accounts

All of us have unfinished business left over from our years on Earth. Approaching death is the last time to make amends, check in, or say the things that have been left unsaid.

If someone can’t be reached, letters can be left, and even dictated. Elaborate isn't necessary. Peace for the person dying is.

·       An advocate for their end of life decisions

End of life decisions need to be written well in advance of the dying process. They aren't valid if you aren't of sound mind without a doubt.

Enforcing a living will or other decision making documents can be difficult if there is division in the family.

It’s hard to not provide hydration of nutrition if it’s been days or weeks. Someone has to ensure the dying person’s wishes are followed. That may have to be you.

·       The environment the dying person desires

Some people are extroverts, even when dying. Some are private, even if the family wants access. The dying person should have the kind of environment they lived with and following their wishes. And someone has to ensure it happens.

Things to consider:

•  music 
•   TV or movies
•   Bedroom or living room 
•   Home or hospital
•  Family 
•   Friends
•  Pets
•  Spiritual folks
• Lighting
•   Scents

·       A safe space to talk or a safe person to talk to about death

Family and friends are often reluctant to face up to the reality of the terminal illness and death: even if they are not, their experience is not the experience of the dying person. If they are still capable of talking, they may need someone to talk to about their fears and terrors, hopes and vulnerability. It may not be family. It may be a nurse, a friend… it’s up to the person who needs to do the talking. They don’t need their decision to create conflict. It’s their decision.

·       Spiritual support- or NO spiritual support.

Some find it comforting. Some find it presumptuous to assume they need spiritual support. Some do not have a faith they rely upon or believe. The dying person needs, and deserves, to have their needs followed at this point. If family needs to listen to religious music, say prayers, light incense… no matter- if it’s not something the patient wanted or participated in, it belongs outside the door. It’s the patient’s death- nobody else’s.

·       Pain management/comfort measures

A dying person deserves to have pain and discomfort resolved. They may not be able to tell you what they are feeling, but their body can to some degree. Blood pressure, fever, grimacing, tightened muscles, low oxygen saturation, irregular breathing. Those and so many more are indicators of the patient’s body being uncomfortable. Can you fix the breathing? Probably not. But you can add oxygen. You can administer pain medications and anxiety meds through sublingual administration. You can add a subQ IV to administer meds without adding fluids that could create respiratory distress. You can massage. Make the bed softer. Use a cool washcloth. Turn on a fan. Add a blanket.

Families tend to be especially distressed about morphine and other meds. They are not going to kill a dying person. They make the muscles relax so breathing is less stressed. They relieve pain. If your loved one has asked for comfort measures, they don’t want to die in pain. Allow the medical professionals to guide you. Ask questions.

·       Food? Fluids?

At the end of life, the body has a process of its own as the systems shut down. It no longer needs food. It doesn't thirst. The mouth may need moistening. Oral care is still necessary. But if a dying person says they don’t want food or fluids- believe them. It’s hard to watch. You are still hungry. You are still thirsty. They are not. Honor their body and their needs. Forcing fluids can cause choking and even pneumonia, hastening death.

·       Visions supported

Many people who are dying will report that they are seeing loved ones who died before now, or angels.  Don’t question or deny that. There have been studies that say they may be caused by hypoxia or changes in brain chemistry. The studies, however, cannot include dying people. We don’t know this experience. We do know it’s common and brings comfort. Tell them you are glad they are there.

o   Your voice

The last sense to die is hearing. If your loved one would want you there, talk to them. To the end.  

o   Permission

This is most likely the hardest of all. No matter the disease or the pain, very few of us really want our loved one to really die. The fact is they are going to die. Tell them it’s ok. Tell them you’ll be ok; you’ll take care of business they left behind; you’ll carry their memory. Tell them what you will miss most and how much you loved them. But tell them they can go.

It’s not easy to sit while someone you love is dying. It’s a gift if you can.