Picture the strongest person you’ve ever known. Someone who could do anything, fix anything, always remind you to change the oil in your car…Mr. Reliable. You love this person deeply, as he is your father. Now picture this person confined to a recliner 22 hours a day, struggling to breathe, unable to make a short trip to the kitchen table without becoming winded. 

Dad now has trouble operating the remote control to the TV and forgets all but bits and pieces of conversations. You wonder why you cry after each visit and cherish those goodbye hugs more every time. You may be experiencing anticipatory grief.

A Different Kind Of Grief

Anticipatory grief is the emotional pain felt in advance of a loved one’s death. It is experiencing that person’s loss while he is still present. Anticipatory grief is very real grief. It can feel just as intense as grief felt after the loss of a loved one.

Those who have anticipatory grief often feel guilty and lonely. Guilty, because although they love that person deeply, they sometimes wish for the suffering to just be over, and lonely, because they can’t or won’t express those thoughts and feelings to others for fear of rejection and judgment.

Loneliness can also occur as the dying person draws inward and away from loved ones in anticipation of death. Death from chronic illness is like losing someone twice.

The dying can suffer from anticipatory grief as well, both from others withdrawing themselves from the painful process, as well as from grieving their own losses like things they can no longer do, life events they will miss, and a growing dependence on others.

Refrain From Judging

A person who is dying can become lonely as well when friends and loved ones find the process too painful and pull away. Sometimes Dad just sits in his chair with his hearing aid off, staring out the window. He feels so far away, and yet he’s right there. How often are family and friends of chronically ill or dying residents subconsciously judged by others, even professionals, for “abandoning” their loved one, not visiting or calling enough, not staying long enough, not acting as we think they should?

Anticipatory grief can be hard for others to understand. After all, the individual is still here. Until you have experienced it, anticipatory grief can be easily overlooked or dismissed. It is important for professionals to help friends and family understand that their feelings are normal and understandable, and that they don’t need to keep them bottled up. Encourage them to talk to others, perhaps find a support group or even a counselor to share these feelings with.

Caregivers and loved ones also need to be encouraged to take time for themselves. It is critically important that they fill their own “bucket,” or eventually they will have nothing left to give.

When Hospice Can Help

Professionals need to educate families about hospice care. They may be resistant at first, torn between hope that their loved one will get better and feeling like they are giving up, but keep trying, gently. Hospice can provide services as well as emotional support to all parties.

Hospice has been a true blessing for my family and my father. My mother has a wonderful support network of friends, family, and hospice, but she still struggles with anticipatory grief. She is losing her husband of 53 years slowly, bit by bit. She feels guilty every recertification period, as she wants him to be “better,” which means being discharged, and overwhelmed at the same time at the thought of caring for him without hospice care.

Sometimes, when I see my Dad dozing in his recliner while my Mom looks at him with a pained expression on her face, I wish everyone’s suffering was over. But then I think of the good times and remember there is a time to every purpose under heaven. “Grief is not a sign of weakness, nor a loss of faith, it is the price of love” (www.familyshare.com).

Deborah Veley has spent her career in health care, with 10 years of it in long term care. She is now executive director of the Ohio Board of Executives of Long Term Services & Supports. She holds an MSW and an MBA and is a Licensed Nursing Home Administrator, a Licensed Independent Social Worker, and a Certified Executive in Assisted Living. Veley can be reached at dveley@neo.rr.com or (937) 532-5084.