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Caregivers and the personal feelings of loss

by Isabel Fawcett

Grief is socially understood and highly visible. Friends and family mourn the death of loved ones and others whom they have known. Feelings of loss surface for many caregivers while the chronically ailing person is still alive. Known as anticipatory grief, these feelings can be easily overlooked by those who would recognize more obvious causes of grief.

For my entire life, I have heard many people speculate that it is easier for surviving family members when chronically ill loved ones experience sudden onset chronic illness and die in a relatively short period of time than when they linger.

Fast-moving chronic illnesses and care circumstances are perceived by some individuals as lessening grief and feelings of loss for family survivors. According to the same prevailing perception, living with a loved one's protracted, chronic illness is perceived as more painful and devastating for family members than living with a loved one's short illness before death.

Would that coping with loss were as simple as some may think. It depends on so many factors, including family relationships pre-dating the onset of chronic disease or health decline. Grief and coping with feelings of loss is not formulaic in how it may be experienced by some individuals.

Fast-Track Chronic Illnesses Still Hurt

My beloved Dad suddenly became ill on a Sunday. He finally agreed to go his doctor that Monday and was admitted to the hospital on Tuesday. Dad died on following Saturday night. Certainly, for me, his manifested physical symptoms of illness were on a fast-track.

In the week prior to Dad's hospitalization, my heart told me that my Dad was seriously ill. I provided assistive care to him as much as I could based on what I could observe and intuit. He had been otherwise fairly healthy before that long-ago, still memorable weekend of rapidly declining health.

On Wednesday evening of the week prior to Dad's hospitalization, I drew a warm bath for my Dad and encouraged him to soak in the tub hoping he might feel a little better. I didn't know what else to do. I had just gotten home from work and could tell that Dad had suddenly become physically weak.

Still wearing my work clothes, I helped Dad in and out of the bathtub, then into his most comfortable pajamas. After helping him back to his bed, I sat on his bed reading his favorite devotional to him as he drifted off to sleep.

Feeling entirely numb, I walked trance-like to another bedroom where I dropped my body's full weight onto the floor. Knees drawn to my chest, both my arms wrapped around my knees, forehead lowered to rest on top of my knees, I prayed for my Dad's well-being. Oddly, I also prayed that he would not suffer if that were to be the well-being outcome. I loved Dad dearly; enough to let go rather than see him suffer.

Other than crying in silence on the floor in another bedroom on a Wednesday before Dad was hospitalized, I was unable to mourn losing my Dad for an entire year after he died.

In retrospect, it may have taken me that long to begin mourning Dad's death because of his whirlwind chronic illness, health decline, and equally fast-track death allowed me no time to deal with my feelings of loss in a timely manner. The chronology of Dad's sudden-onset health decline allowed me an hour on the floor, tops, to surface and recognize my anticipatory grief.

Fast-track elder health decline and chronic illnesses can be pretty traumatic for some family survivors. It was for me.

Anticipatory Grief May Have its Advantages

The operative word for some caregivers' anticipatory grief is that it "may" have its advantages, though only individual caregivers know. Perhaps only time will tell.

Having been a full-time caregiver for more than a year, and an on-again, off-again caregiver for more than 10 years, I have had plenty time to feel anticipatory feelings of loss, envisioning losing my mom, who is my lifelong best friend. The past year alone helps me better accept Mom's fragile health and accept the inevitability of advancing age and chronic disease processes.

If nothing else, if my mother dies before I do, I already know that I will have no regrets. I have done my caregiving and family best. In my circumstances, angels could do no more. That is a pretty good feeling now that I am thinking about it.

Caregiver Encouragement in Elders' Life Transitions

Dad always reminded his family that the only permanent thing in life is change. That doesn't mean that my fellow caregivers and I have to like the changes or be thrilled about whatever the changes may be.

We caregivers, especially, need to allow ourselves to experience the entire range of emotions that arise from caring for chronically ill elders whose health is in decline. Anticipatory feelings of loss are not only reasonable but entirely human.

If caregivers are lucky, we will have more than a week to adjust to life losses. If we are not granted the luxury of time, you and I still may have feelings of loss in need of healing. No rush getting to that place of healing; just don't take too long, either.

I've walked a mile in your shoes. I understand. Your feelings are perfectly normal.