Nearly everyone involved in caring for aging loved ones is experiencing grief. Often, however, we don't identify it as grief. We have a parent who used to be strong and capable who begins 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 with full blown dementia. 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 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 care for 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 while our loved one is still living – 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 – caregiver 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.