Grief begins the moment your family finds out someone you love has a terminal illness. This type of grief is called “anticipatory grief,” and it can be experienced over days, weeks, months, or even years depending on how advanced the diagnosis is. We are grieving a person while they are still with us.
The News
Your entire family can be heartbroken when a doctor says such words as “Alzheimer’s,” “end-stage cancer,” or “no more treatment options.” Your mind can be going a mile a minute or feel blank. Some people ask a lot of questions while others focus on feelings. Both are correct. You are now grieving. You are now anticipating your loved one’s death, and they are typically fully aware that they are dying, too. They are grieving and preparing to die while you are anticipating their death.
This moment may or may not come as a shock, depending on how long they have been coping with an illness. Some, like cancer, may begin with aggressive treatment and be one day met with a conversation about palliative care and hospice if all options have been exhausted. With diseases such as dementia or Alzheimer’s, the diagnosis is terminal with different timelines of disease progression.
When your family receives news of a terminal illness, all of you, including your loved one who is dying, can experience every stage of grief. You may be in disbelief and deny this can possibly happen. You may be angry or sad. You may reach acceptance that death will come. However, grief is not a timeline with phases to complete before going to the next step. It is much more like a tumbleweed with all the stages thrown in, experienced at different times, and then re-experienced again later.
Stages
Throughout the days, months, weeks, or years that someone is dying, everyone who is close to them will experience anticipatory grief at different intensities depending on their relationship to them. There are also stages as the end grows near.
We begin to grieve at diagnosis or when the diagnosis becomes terminal. Then, as the disease progresses, we enter a new phase of anticipatory grief. The end is clearer. As they become sicker, whether it is physically or mentally visible, we grieve who that person was, their relationship with us, and what they were able to do. They grieve a loss of independence as they rely more heavily on their family and other caregivers.
You may hear medical providers, especially those in palliative care and hospice, say your loved one is “at a new baseline” as they become sicker. When we have an illness, we hope to get better and return to our normal state. If that is not possible, then each time someone with a terminal illness becomes sicker but cannot return to their normal, then they are at a new baseline. At each new baseline, you may grieve who they were previously and fully experience grief again, and that can happen in stages as each baseline approaches. These stages are all part of anticipatory grief. You are grieving who they were and grieving their death before it happens.
Anticipating “Goodbye”
At some point, death is days or hours away. It is time to say “goodbye,” and your anticipatory grief will no longer be anticipatory. The time spent in anticipatory grief may be painful, but it is also a gift. It is a gift of time. Cherish those days, weeks, or months. Grieve together, leave as little unsaid as possible, reminisce, and make memories.