"The doctor said months. What am I supposed to do with months?! I won't get to be a part of my children's stories. I won't get to meet my future grandchildren. Why would I want visitors? For everyone to sit around, waiting for me to say something profound?!"
"He's been in the intensive care unit (ICU) for two weeks, and his kidneys and his lungs aren't improving. I know he wouldn't want any of this. I just...I don't even know how to use our thermostat. And he was always the one to make us coffee every morning."
Anticipatory grief is acute emotional suffering, pain, and sorrow in anticipation of a loss, when we actively grieve now the loss we envision in the future. Some people living with worsening serious illness or advanced disease may experience this, and some may not. Sometimes caregivers experience anticipatory grief.
A person living now with a dramatically different view of the future - whether it be due to the diagnosis of a serious illness or the prognosis of a shorter life expectancy - may grieve the impending loss of an identity, loss of an independence, loss of a relationship, loss of a dream, loss of a lifestyle.
"I used to play ball. I was an athlete. What am I going to do if I need help just to get out of bed?"
"People don't realize how much we need to drive to get things done. Having to ask other people for rides means using those rides to get to the grocery store and doctors appointments. Getting my nails done used to be my solace, and I will have to give that up."
"I've never been to Paris. I always thought Paris would be such a beautiful city to visit. And now I'll be stuck here with dialysis..."
"My wife and I are growing distant. It's like she's preparing herself for my death and acting as if I've already died."
If a person does experience anticipatory grief, they may feel a range of emotions such as anger, sadness, fear, loneliness, regret, or numbness. They may experience a swing of emotions from day to day. This is normal, and it can be physically and emotionally exhausting.
Acknowledging these emotions and finding a means of expressing or channeling these feelings are important for coping with anticipatory grief. The following are suggestions for how a person or caregiver grieving anticipated loss could cope with their thoughts and emotions.
1. Talk to a trusted family member or friend whom you know will actively listen.
You may have several close family members and friends whom you trust. Sometimes certain family members or friends may attempt to stop you from "being so negative" when you attempt to express your thoughts and feelings. They may interrupt to tell you to "stay positive, " "think positive thoughts," and "keep fighting" when you start to talk about what is weighing on you. Though they may support you in other ways, they themselves may not be in a place to sit in the presence of grief and sorrow in a loved one.
The family member or friend to speak with is the one who is willing and able to sit with you without judgment as you express your grief of the losses you are experiencing and the losses to come.
"Almost all my siblings tell me to 'Stay positive!' I can talk to my baby sister, though. She lets me talk on the phone, and I always feel better after I talk to her."
2. Talk to a chaplain, spiritual advisor, or faith leader.
Regardless of religious or spiritual beliefs, it is normal to search for meaning in loss.
"I'm not religious, and I had my doubts when you suggested I speak with your hospital chaplain. But he really listened. It was good. He said he would return tomorrow."
3. Speak to a counselor.
If you feel uncomfortable speaking with someone you know, or if you are unable to find someone among family and friends who is able to truly listen without trying to change the subject, consider asking your healthcare provider for a referral to speak with a counselor.
"I'd rather talk to someone outside the family. My family don't talk about this kind of stuff."
4. Attend support group meetings.
Support groups are groups of people who meet for a common purpose. They are usually undergoing similar experiences in an area of their life, such as a multiple sclerosis diagnosis or bereavement (mourning after the loss of a loved one). They may share their thoughts, feelings, experiences, and coping strategies, or they may listen to others who share.
Support groups may be in person or on-line. When looking for a support group, consider asking a healthcare provider, who may refer you to a social worker or counselor more familiar with support group resources, or visiting the websites of organizations specific to your or your loved one's illness such as Alzheimer's Association or specific cancer organizations.
If one group or format does not feel like a good fit, you might need to try another.
"Going to the MS (multiple sclerosis) support group meetings was life changing. I hadn't asked any questions when I was diagnosed, and I was living in ignorance and fear. I withdrew from life. Then one day my son cried and said he was scared for me. So I went to the MS walk. I found a flyer for a support group. I went, and I met people who are like me but still able to live their lives."
5. Instead of talking, take action, do, or create.
For some people, "sitting around and talking about feelings" may not be as helpful as taking action and actively working on a hobby or creating something to channel how they are feeling. This may give them a sense of control at a time when their life feels upended.
A person might prefer working in their garden, creating music, painting, knitting, or completing 500 piece puzzles as an outlet to their emotions and their grief. Whether they realize it or not, they may start working on a legacy project (read Post 12: Legacy Work and the Five Senses).
"My wife keeps telling me to talk, but I don't see the point. She says the support group helps her, but I don't see the point. I'd rather work on my cars."
In addition to finding means of expressing their anticipatory grief, a person could fall back on what had previously given them strength and enabled them to get through really tough times in the past.
"I walk in the woods behind my house."
"I repeat the Serenity prayer four times a day."
"I sit with my family. I hear them talk. I watch them eat. I'm with my family."
Anticipatory grief and the various ways it presents itself are normal. There is no medical treatment nor pill to treat grief. Over time, the intensity of emotional pain and sadness lessens. Grief may flare up, but a person is still able to continue with their day to day self care and responsibilities.
Sometimes a person may experience depression in addition to grief. They may feel persistent hopelessness, worthlessness, guilt, and/or apathy (lack of interest or indifference). The strategies that used to help with coping and the things that used to bring pleasure, joy, or peace are no longer helpful. Unlike grief, depression is a medical illness. Depression does require medical treatment, and concerns about depression should be brought up with a healthcare provider.
For those who experience anticipatory grief, there is realization and acknowledgement of anticipated profound loss. This acknowledgement could result in opportunities to adapt to and find meaning in their illness. It could result in a person finding a new or renewed purpose in an altered future.
The acknowledgment of impending loss could result in opportunities to complete important tasks [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA) and Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ] and share meaningful words with loved ones. Perhaps it could even result in time to find closure and a chance to say goodbye.