Coping with Caregiver Grief

From the Summer 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Author Unknown

"Caregiver grief is a relentless on-going process brought about, not by a loved one's death, but by the changed aspects of their life, and inevitably the life of the caregiver."

It's been many years since my husband was diagnosed. Yet I remember it as if it was yesterday -- the messy looking waiting area just past the nurse's station, the ugly plastic molded chairs and the flat, even voice of the resident neurologist who suggested I sit down before he said those mind-numbing words which changed my life. I thought, however, that although I keenly remembered the experience of hearing the diagnosis, I had dealt with all of the emotions that accompanied it. I was wrong. I have accepted the reality of the disease and its day to day impact, but I find I am still grieving the loss of my dreams, my dreams for a life that didn't include infirmity and caregiving.

Much has been written over the years, about death and dying, and there is currently a major initiative underway sponsored by the Robert Wood Johnson Foundation to help Americans better cope with these inevitable aspects of life. Less attention, however, is paid to caregiver grief, that relentless on-going process that is brought about, not by a loved one's death, but by the changed aspects of their life, and inevitably of our own.

Some would certainly say: "Get over it, move on." "I have", I would respond. "At least I've gotten over the shock of it, the initial trauma." But the reality is that caregiver grief is perpetual. It can't be tied up neatly in a bow. And although we move on; we function; we hopefully even dream new dreams and attempt to achieve new goals, we are inevitably thrown back into grief each time there is a downward shift in our loved one's condition, each time we catch a glimpse of what our future might be like in the example of another family's life. The neat bow we tied around our pain begins to unravel and we grieve again, not in quite the same way we did the first time, or the second or the third, but in a way that reflects who we are now, at this time of our lives and in our current circumstances.

Illness and disability is a family affair. The diagnosis that made our family member need care, happened to us as well. It is our diagnosis just as much as it is theirs. I have a psycho-social form of the disease, just as my husband has a clinical one. Anecdotal wisdom says that the person with the clinical diagnosis suffers more in a physical sense, but that their primary caregiver suffers more emotionally. If this is true, it is no wonder that caregiver grief does not easily go away, that it returns to haunt us from time to time. Our loved one's condition stares us in the face everyday and we are powerless to change it. We can bring comfort.

We can help with activities, but we can't make the diagnosis go away. Unless a miracle cure comes around the corner, it will always be there.

In a recent article, syndicated columnist, Ellen Goodman, talked about the schedule of grief, the fact that we Americans expect things to happen quickly, that we have no patience for problems which linger, for wounds which do not heal. She said: "The American way of dealing with it [grief], however, has turned grieving into a set process with rules, stages and of course deadlines. We have, in essence, tried to make a science of grief, to tuck messy emotions under neat clinical labels -- like 'survivor guilt or 'detachment.'...We expect, maybe insist upon, an end to grief. Trauma, pain, detachment, acceptance in a year. Time's up. But in real lives, grief is a train that doesn't run on anyone else's schedule."

What do we do with this caregiver grief, that never fully goes away, that doesn't have an end, and that may from time to time spring afresh, with new tears and new fears. Acknowledge it for one thing. Don't deny its existence. Call it by its name. Don't tell yourself that you shouldn't be feeling this way. Your feelings are your feelings. They are an essential part of you. Burying them only makes them change from seeds which your tears can nourish and nurture, so you can see them for what they are, into a festering mold that stays tucked away inside and eats at your inner core. Denying your grief denies your humanity. If you didn't care, you wouldn't feel so bad. So take out the tissues, share your sorrow with a friend and with your loved one, if you can. Be good to yourself. Find emotional nourishment, get lots of hugs. Grieving is hard work. It takes time and energy. Learn from the experience so that hopefully you can grow from it, so that the grief doesn't debilitate you.

It's been years since we received the initial diagnosis. I have dreamed new dreams. I have laughed. We have experienced the goodness of life. But sometimes the old wound aches in a certain way and I know, as I believe all caregivers know, that I am in for a spell.

When your wound hurts, whether it is still fresh or seemingly healed beneath scar tissue as mine is, remember these words of Ellen Goodman's: "Hearts heal faster from surgery than from loss" and know that it is okay to cry - for yourself - as well as for your loved one.

Created and maintained by Renette Davis. Send comments to Renette by clicking : here.

Created: July 24, 1999
Last updated: Nov. 30, 2010.