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Delayed grief: why caregivers experience grief months or years after a death

by Carol Bradley Bursack, Editor-in-Chief

Grief isn't logical. When a caregiver travels the often long journey toward death with their aging parent, there is generally a combination of relief and grief after the actual death occurs. It's difficult to watch a loved one suffer, and many elders have suffered quite some time before they pass on. The caregiver then faces a recovery period. There's grief over the death, but relief that the pain is over. There are the legal and logistical duties that accompany any death. However, after the funeral, after emptying the rooms, after the initial work is done, people usually move on with their lives. For some, though, months or years later grief hits hard. Why then?

Grief From Out of the Blue

It's a day I won't forget. My mother, the last of my seven elders, had died approximately two years earlier. During her last months, I'd written a book on caregiving. I'd begun writing a newspaper column on elder care. I'd also begun writing on caregiving for Web sites. Even though nearly everyone I knew, from casual friends to medical professionals, predicted that I'd feel a huge vacuum when the last of my elders died, I didn't. Not then.

Of course I felt grief when each of them died. I loved them all. But their last years, every one of them, were painful. They suffered long, slow deaths. So there was a lot of relief mixed with the grief when they finally passed on.

I'd been a caregiver for many decades, starting with my crippled grandmother and a baby sister who was born when I was twelve years old. I didn't have children until I was in my early thirties, so there was a break. Shortly thereafter the births of my children, the first of the next generation of elders needed care. As the elders grew fragile and needed care, I stepped in. One by one my elders' lives ended. However, I never really got away from elder care, as it had become such a passion for me that I was building a career around helping other caregivers.

Why Did It Take So Long?

I feel that my continuing involvement in elder care may have been the root of my delayed grief. My last elder died, but my caregiving continued. It has just taken the form of the written word. I communicated with caregivers, answered questions, wrote articles and columns, spoke to groups. I was, in essence, still caring for elders, albeit by proxy. The elders were loved ones of the people I attempted to help along their caregiving journey.

However, grief will find a way to come out from under the emotional baggage most of us carry. Thus, one day as I was walking down the hall of the building where I worked as a news librarian, I was hit with a feeling of grief that was physical as well as emotional. The streets out the windows of the library were still dark, since it was winter in the north, and I started work at 6 a.m. The few other employees in the building at that early hour were on different floors. There I was, walking from the library down the silent, lonely hallway to the bathroom, when I was struck. That's the only word that really works. Struck as though someone had it me. Mom was dead. Two years after we'd buried her next to Dad, I suddenly "got it."

The most well known stages of grief were identified in Elizabeth Kubler-Ross' classic book, "On Death and Dying." Kubler-Ross described the stages thus:

  • Denial (this isn't happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I'll be a better person if...)
  • Depression (I don't care anymore)
  • Acceptance (I'm ready for whatever comes)

Dr. Roberta Temes in the book, "Living With An Empty Chair - a guide through grief," describes three particular types of behavior exhibited by those suffering from grief and loss. Here stages are described thus:

  • Numbness (mechanical functioning and social insulation)
  • Disorganization (intensely painful feelings of loss)
  • Reorganization (re-entry into a more 'normal' social life.)

While there are other stages of grief discussed elsewhere, these two lists are spotlighted on the site Cancersurvivors.org, and they feel right to me. Whether the grief is over cancer, an Alzheimer's diagnosis or death, it will still fall into a human pattern, loosely, if not closely, resembling the stages listed above.

Grief Doesn't Follow a Straight Line

Even the experts mentioned above have stated that grief doesn't run in a straight line. It is not "organized." Most of us will spend time in denial, go on to anger, back to denial, off into bargaining, back to denial, and on and on. Grief is a process. It's a winding road and is different for everyone. So is the time frame during which we grieve.

I miss my loved ones on special days such as birthdays, Mother's or Father's Day, the Christmas holidays. I believe many of us carry part of those we've loved and lost in our soul, maybe forever. But for me, that is more about memory and legacy, not true grief.

What hit me that day in the hallway at work was deep, gut-wrenching grief. I had delayed fully feeling the loss of not only my mother, but of all of my elders, because my business, plus my continued work in elder care, had muffled my feelings and buried them deep. Therefore, when the feelings surfaced unbidden, they were powerful. That, too, isn't unusual.

I got through that day and eventually was fine. I knew what I had experienced, and why. However, it still surprises me when I am talking about my dad or another of my elders and I tear up. Generally, it's when I'm talking of the injustice of aging, of suffering, or even of how our medical system often fails our elders. Feelings that I think I've come to grips with surface. I struggle to blink back unbidden tears that prove to onlookers that I still carry a certain amount of pain from my elder care journey.

I'm fortunate that I can continue to work out these feelings by giving what I can to other caregivers. Many people I know do the same. I'm acquainted with surviving spouses who continue working with auxiliaries in the nursing home where their spouse died. I know others who volunteer to sit with parents of their friends so that the caregivers can have some respite time alone. We will all work through our feelings in our own way. The one thing that is certain is that we can't avoid them forever. The will come out.