As previously noted, with the changing seasons comes a tidal wave of ill children. While I have been very fortunate to not have faced a bout of pneumonia, a shunt malfunction, respiratory distress, or other serious complications; I feel the sadness when others are faced with these difficult obstacles. My network of friends and acquaintances includes many families of children who live much more difficult lives, a blessing on most days but some trying days it is a heavy emotional burden. It is not merely because I have grown to love these children, but it is a dose of what my reality is now. The reality that my child will never face something as typical as an ordinary cold, his worse case hospital scenario will never be as simple as a tonsillectomy. Every day is a day beyond the prognosis, one more day to be eternally grateful for. However, every day is also another day closer to no more days... difficult to overlook during times like these.
Sadly, reality is not always prisoner to the imagination unless you allow it to be... thus, the management and understanding of grief. In my case, anticipatory grief, first shared with my by a friend of a child with a similar condition (HPE). You want to hope and believe, but those hopes and beliefs realistically include the inevitable as well:
WHAT IS ANTICIPATORY GRIEF?
By Beth Erickson, Ph.D.
Anticipatory grief is what happens when you know there will be a loss, but it has not yet occurred. This is what happens when a loved one is dying, and both the patient and their loved ones have time to prepare. Anticipatory grief is both the easiest and the hardest kind of grief to experience. It is marked by “stop and go” signals. With these losses, the handwriting is on the wall... but it doesn’t make coping with it easier.
Because you have time to prepare, you can begin to envision and rehearse your life without the person who is dying. This gift of time offers the opportunity to resolve any regrets you may have with or about your loved one. You can take this time to make amends with your loved one, and to tell him or her how you feel about them. Your loved one can do the same with you, and other family members. You can let go of anger or guilt. You also have the chance for delicate conversations about such sensitive topics as death, end of life wishes, and after-death preparation. You also have an opportunity to get information about your family.
One obvious drawback to anticipatory grief is witnessing your loved one’s struggle with death. As the loved one’s condition worsens, you may grieve with each downturn. You may experience feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living with a pit in your stomach that won’t go away as you await death’s arrival. In addition, sometimes when people are facing death, their own fear, pain, or anger may make their personality seem to change from Dr. Jekyll to Mr. Hyde overnight or even from one moment to the next. In my own case, when cancer ravaged my mother’s brain, she became psychotic and for a time didn’t know me. This was devastating to me. Thank goodness, her behavior did not last until the end of her life, and she regained her normal personality. But for some families, the ones we love continue to have behavioral changes as they face the end of life. This can be challenging, and healthcare professionals such as hospice workers or counselors may be able to help.
Perhaps the most difficult challenge with anticipatory grief is that it is difficult to tolerate living in a state of emergency for an extended period of time. The mind can only tolerate so much angst. When a loved one is dying, the “emergency” and angst period may seem to last forever. You do not want your loved one’s death to come more quickly, yet your mind may not be able to handle any prolongation. Your mind may blank out self-protectively.
But eventually, a reminder or a new episode with the loved one sets off the grief again. Here, intense grief comes in waves alternating with times of numbness. These “stop and go” signals allow you to shut down emotionally. This insulates you before the next event occurs. Then, your grief begins anew. These flat periods can be looked at as natural, normal, and welcome respite from the agony of the loss. They do not mean you are cold or uncaring.
Anticipatory grief is normal. It is an important part of coping with a loved one’s extended illness. It prepares both you and your loved one for the end of life. Unfortunately, it may also be an emotional roller coaster. If you can expect that and understand that, you can help yourself cope with it. Don’t feel guilty about anything you may be feeling. Instead, make the best out of each moment you can spend with your loved one, and focus on the positives, such as forgiveness, settling affairs, and helping your loved one make plans for their passing.