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Tim’s dad, Leo, was enamored by timepieces. The house was full of all kinds, and the quiet of their small Michigan house was always disturbed by the chimes of his grandfather clock each quarter hour.
Norma was always aware of the time.
While we were traveling together in the motor home, that was the hour that Norma went to bed each night, and the time she got up — not a minute before or a minute after. We always had her seat at the dinette table ready in the morning in anticipation of seeing the sliding bedroom door open to reveal her smiling face.
If the clock read four minutes past nine and we did not hear her rustling around, we would wonder if this was going to be the day we were dreading. Would we open the door to find that she had slipped away in her sleep, as she told us her mother did so many years ago?
By ten after the hour, we would begin to become really concerned. All sorts of scenarios would run through our heads. Then the loud sound of the vacuum flush toilet in the back would snap us out of our brief (and unnecessary) grief spiral.
The pill organizer would come out, the decaf coffee would be brewed, and another day of caring for dear Norma would begin.
We have since learned that our heightened concern for Norma was just one of many things associated with anticipatory grief. The rehearsal of her departure from life in our minds, and our attempts to adjust to the consequences of her final exit were two more.
Most people are familiar with the grief that occurs after death, but anticipatory grief is not often discussed. Rather than death alone, this grief can include many losses: the loss of your companion; lost opportunities to do things together; changing family roles; a financial, job or lifestyle loss.
Anticipatory grief is also not just simply normal grief started earlier. For some, including us, it prompted a conscious closure before Norma’s actual death. And though not everyone experiences this type of grief while caring for their loved one, we have found that it does serve a purpose.
This time can be an opportunity to resolve differences, and to give and receive forgiveness. It is a chance to be at peace and to say goodbye. Filling out the Five Wishes together with Norma helped us out a lot with that. While these acts do not necessarily make the grieving process any easier, they can make death seem more natural. It did for us.
It is hard to maintain the delicate balance between maintaining hope, while at the same time beginning to let go. These feelings are not only painful, but it seems harder to receive support from friends and family for this type of grief. Sometimes grieving before death can be misconstrued as “giving up” to someone who has not been a caregiver.
The two of us have also found that grief before death is not a substitute for grief later on, and it will not necessarily shorten the grieving process after the transition. Everyone grieves differently, and there is no fixed amount of grief a person experiences with the loss of a loved one. Even if the person you are caring for has been in decline for some time, nothing can really prepare you for their actual death.
Being a caregiver is hard enough, and nobody should have to face anticipatory grief alone. Deeper loneliness and isolation can be the only result when you keep your feelings to yourself. It is not only important to let yourself feel your pain, but to share your feelings with a family member or close friend as well.
Again, it may be difficult to express your grief before death because some may see it as unsupportive of your dying loved one. But finding a trusted friend to share your feelings with can be a great first step in coping with this grief. If you cannot find a supportive friend, look for an online group such as Miss Norma’s Caregivers Retreat for a kind ear. Is anyone here going through anticipatory grief while caring for their loved one? How does it make you feel, and what are you doing to cope?