Early Grief and the Long Goodbye

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Nearly everyone involved in caring for aging loved ones is experiencing grief. Often, however, we're not aware of this grief. We have a parent who used to be strong and capable begin to ask for a little assistance. No big deal, right? We're happy to help.

But underneath, often unnoticed, there's a knot in our hearts. We're grieving the loss – the loss of function that made our parent need to ask for help. Weren't they the ones who helped us? Weren't they the ones in charge?

Generally, these changes are subtle, the grief sneaky. I remember watching my parents age in the normal fashion. I'd occasionally look at them and be startled by the realization that they were aging. But that was all I acknowledged. I never intentionally thought about loss and pain. It dwelled beneath my consciousness.

Then my dad had brain surgery to drain away fluid buildup from a World War II injury. He went into surgery knowing that if he didn't have it, he would eventually live with terrible confusion. He came out of surgery totally demented. The combination of his age and significant scar tissue, I suppose, was to blame. Whatever the reason, our family was a victim of one of those things that only happens to "other people."

We were suddenly thrown into a frenzy of action. There was so much to be done; there were so many decisions to make. What was best for Dad? For Mom? I became the primary caregiver, immersing myself in the task of making Dad's existence worthwhile.

Whatever he imagined was happening, I did my best to make it so. When he was waiting for his medical degree to arrive, I made sure one did (my version looked pretty good, too, hanging on his nursing home wall.). I became his office manager. His music director. Whatever he needed, I did everything humanly possible to provide.

I had several other elders to cope with, as well as a son with chronic health problems. I didn't have time to think of myself. Now, I look back and see what I did to myself. If I had a good friend going through all I was enduring, I'd have been offering to help. I would have recognized that she was grieving the loss of the father she'd known. I would have pressed her to do some things to take care of herself. I would have suggested counseling.

It wasn't until a decade later and Dad had died that I recognized what I'd been going through. People expressed their sympathy about Dad's death. "I'm so sorry your dad died," they'd say.

At times, I wanted to ungraciously answer them with, "I'm not sorry! My real dad died ten years ago. He's been suffering terrifying dementia for a decade. He finally was able to die, peacefully, in my arms and now the suffering is over." Yet, I knew people meant well, so I bit my tongue.

Gradually, I recognized that I'd been grieving that whole decade. I'd been abusing myself by not giving myself some slack; by not recognizing that I had the needs of a grieving person. I did not treat myself as I would have treated a grieving friend.

I now speak to groups often, and remind caregivers that they are experiencing what I call early grief – that long, slow pain that weighs on our hearts as the years of caregiving pile up; as we watch the losses mount. It's all a part of the long goodbye.

There is another type of grief, something hospice professionals call anticipatory grief. This differs from what I call early grief (others may have a different term). Anticipatory grief is more like the grief one feels as the death of a loved one nears and we start to grieve what we know will be their loss. What will we do without them? How will we keep on living? We are looking ahead to the loss we know is coming.

The early grief I'm speaking about is far more subtle, and can be horribly damaging to our mental and physical health if we don't address it. It creeps up on us as the small losses build – both those of our loved one and those of our own. For them it's a loss of function and independence. For us it's the loss of their independence, as well. Also, it's the loss of time for ourselves, time for our jobs, even time for our children. It's an insidious feeling, akin to – and often accompanied by – depression. It's a kind of grief that we need to identify and perhaps get professional help with, or at least the help of a support group. For if we live for years with this unrecognized grief, as we witness loss after loss before the actual death occurs, we will kill off a part of ourselves. Our physical and mental health may suffer irreparably.

The well of grief is deep. We need to watch so we don't drown under this sorrow before we even acknowledge it's there. We need to be reminded that we caregivers, too, are suffering.

Yes, the grief before and after death is huge. But the subtle ache, as we watch the slow fading away of a loved one, is grief worth recognizing and bringing out into the open. Statistics say 30% (some indicate more) of the caregivers die while they are caring for a loved one. That is, before the loved one dies. Early grief is part of this dynamic. We need to be a friend to ourselves and get help, before we become one of those statistics.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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145 Comments

I have been feeling this for the past two weeks - I just couldn't put a name to it.

As my dad recovers from his cataract surgeries ~ we have been planning on him going into AL. We have both visited; he likes it; etc. One the one hand, I felt as though a weight has been lifted from my shoulders - but then I picture this old man, alone, dropped off in a strange place. I then try to picture my life without him . . . and the tears come. It happens on the way to work; at work; on the way home . . .

Now, at least I can put name to it. That helps
What a great article. I lost my Dad a few months ago, and have only just been able to start to feel grief. He and I were extremely close, but when he started to show symptoms of dementia I became frustrated with him, and I'm sorry to say, a bit angry. He was my father, my hero, and the person I loved most in the whole world. I didn't see him at all when he lived in a care home, but I felt constantly guilty about it. It wasn't until I found out that he was days from death that I visited him. He was asleep the whole time. I was unable to express my grief at his illness, when it arose, as it was not acceptble. You grieve for someone when they die, yeah? Well, when he did die I put up a strong front. I'd ben expecting it. It's only 3 months later that it's all starting to come flooding back -- the years of him being my best friend, the best teacher in the world, and the person I could actually turn to long before I could turn to my mother. Now I think about him all the time, and burst into tears when I do. Not just a little weep, but proper crying my eyes out. I just can't bear living without him. I know I'll get through it, but I think grief caused by dementia is something that really needs to be adressed more closely.
I really needed to read this, this morning. My mom is in nursing care, and is barely able to function. She is having double vision, is sleepy all the time and can't eat. She is bedfast and has vascular dementia. To see her in this condition is more horrible to me than anyone can imagine. I now see that I'm not alone. I have been walking around in a stupor for days, unable to sleep well and losing interest in everything and everyone else. I have stopped talking to anyone, and I am at a loss of how to deal with this pain. It horrifies me to see my beloved mother in this condition, and I can do absolutely nothing about it. How can I go on enjoying my life, when hers is so terrible?