Those of us caring for a loved one who’s ill with no known cure; for a loved one whose behavior can change by the minute; for a loved one with no end in sight … we may very well be carrying a grief that’s deep and hidden, a grief that we’re unaware of. All we know is that we get upset too easily, and we too often don’t know what to do about it.
In many ways, that describes me for the 17 years that I cared for my wife Martha after her diagnosis with early onset Alzheimer’s; she’d just turned 50.
Surely, all of us know about the grief that comes when we lose someone we love. And many of us understand the difference between “good grieving” and “bad grieving.”
But if you’re like me, you may not be aware of this oft-hidden grief that’s called “anticipatory grief.” I wasn’t aware until after Martha’s death six years ago.
Carol Bradley Bursack recently wrote about anticipatory grief, and the risks of misreading its symptoms while caring for a loved one with dementia or some other long-standing illness. “Research has shown that those experiencing caregiver strain have a 63 percent higher mortality risk than their non-caregiving counterparts.”
Carol says of her own caregiver days: “I didn’t have the time or energy to think of myself very often...When we are in the throes of caregiving, we often stuff our feelings deep down and focus on getting through each day…I did myself a disservice by failing to recognize that I had the needs of someone who was in mourning…I should have cut myself some slack.”
I’ve been following Carol for a while, and I profiled her in 2017. She writes one of the most practical and insightful blogs—Minding Our Elders—for addressing issues of dementia, aging, and caregiving. She shares her insights about anticipatory grief on the Aging Care website, and she’s kind enough to let me share them here. (Her comments have been edited for space considerations.)
Carol writes…
“Nearly everyone involved in caring for an ill or aging loved one is experiencing some degree of grief. However, we don’t usually identify the complex emotions we’re experiencing as such. When you have a parent or spouse who used to be strong and capable but begins to ask for a little assistance, it’s no big deal, right? You’re happy to help.
“But deep down, there’s a knot in our hearts. We’re grieving various kinds of loss, including the loss of function that comes with advancing age or a chronic medical condition. Generally, these changes are subtle and the grief surrounding them is sneaky.
My Experience with Grieving Before Death
“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 getting older, but that was all I acknowledged. I never consciously dwelled on the fact that they would continue to decline and eventually I would lose them. I didn’t want to. These things did, however, linger in the back of my mind.
“Then one day my dad underwent brain surgery to correct an old injury he sustained in World War II. It was made clear to us that without this operation, he would eventually suffer from severe confusion. Unfortunately, though, the surgery was unsuccessful. Instead of preventing this fate, he came out of the operating room with full-blown dementia. Our family was suddenly experiencing one of those tragic things that only ever happens to “other people.”
“There was no time to fully contemplate the far-reaching implications of Dad’s abrupt change in health. Hard decisions had to be made and there was so much to be done that we couldn’t have anticipated. Where should he live now? What kind of immediate care does he need, and how will his needs change down the road? What is best for Dad? What is best 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 in the mail, I made sure one did. I became his office manager and his music director. Whatever he needed, I did everything humanly possible to provide it or become it.
“At that time, I had several other elders to care for as well as a son with chronic health problems. I didn’t have the time or energy to think of myself very often. Now, I look back and see that I didn’t do myself any favors. If I had a good friend going through what I experienced, I would offer them all the help I could…I would press them to do some things to take care of themselves…But back then, I did not ever think about these things for myself. When we are in the throes of caregiving, we often stuff our feelings deep down and focus on getting through each day.
“It wasn’t until Dad died about a decade later that I recognized what I had been going through…Gradually, I realized that I had been grieving that whole decade. I did myself a disservice by failing to recognize that I had the needs of someone who was in mourning. Like most caregivers, I should have cut myself some slack. I was not as gentle with myself as I would have been with a grieving friend or family member.
Recognizing Anticipatory Grief
“I now speak to groups of family caregivers and often remind them that they are likely experiencing anticipatory grief, whether they are caring for loved ones with a terminal illness like cancer, or a chronic, progressive condition like lung disease, Parkinson’s disease, or dementia…We do all we can to support them and help maintain their quality of life, but we can’t prevent the inevitable.
“Anticipatory grief is different from conventional grief because it is defined by the anticipation of a loved one’s death. With grief before death, we contemplate many of the same questions that usually arise just after a person has passed away: What will we do without them? How will my life change? How will we keep on living? The difference is that we have not experienced the actual loss. We are not yet capable of going through the difficult emotions that accompany death, healing, and rebuilding our life without our care receiver.
“We are mourning while our loved ones are still here. We are upset at the eventuality of their death, yet we are still responsible for their care and privy to every minor change in their condition. Some caregivers are better at coping with the constant reminders that their care recipients are declining. However, a tinge of caregiver guilt is often present for many. Grieving is difficult enough but mourning while someone is still alive just feels … wrong.
“Anticipatory grief doesn’t get the coverage that it warrants. Family caregivers are often confused or embarrassed by these ill-timed feelings, but if they aren’t addressed, they can wreak havoc on our physical and mental health. They creep up on us as small losses mount over time. For care recipients, these include the loss of independence and functional abilities. For us, it’s the loss of time for ourselves, time for our jobs, and even time for our children. It’s the loss of the relationships we used to have with the people we’re caring for.
“This last aspect of grief is especially true for dementia caregivers. Those caring for persons with Alzheimer’s disease and other forms of dementia bear witness to a prolonged mental and physical decline (and cycle of grief) that can last for more than a decade. In many cases, an elder’s independence and functional abilities disappear along with their memories and personality, leaving someone behind who is almost unrecognizable.
Seeking Help with Anticipatory Grief
“Anticipatory grief is an insidious feeling that is often accompanied by caregiver depression and even caregiver burnout. While this kind of grief is far less studied than conventional grief, research suggests that validation of grief feelings, increased coping and self-care, anticipation of future losses, and reframing roles can be useful therapeutic interventions. Working with a mental health professional and attending caregiver support groups can help immensely with grief work, anxiety, depression, and burnout.
“The well of grief is deep. We need to be self-aware and realistic about our emotions so they do not drown us before we realize how potent they are. As much as we strive to be compassionate and attentive to others, we must be reminded that we caregivers are suffering, too. The stress and anxiety that accompany prolonged grief can be deadly. Research has shown that those experiencing caregiver strain have a 63 percent higher mortality risk than their non-caregiving counterparts.
“We need to be a friend to ourselves and get help before we become a statistic. Not only will we gain the tools we need to continue on in our role without jeopardizing our own wellbeing, but we will also reduce the likelihood that we will experience complicated grief after our loved ones pass on.”
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Thank you, Carol, for sharing your hard-earned knowledge. Let me quickly add two bits from my experience, which helped me defuse the stress I felt and, yes, the grief…
It’s important to find someone early on who you are comfortable talking and sharing with, someone to bounce ideas off—a friend, a counselor, a spiritual mentor, a support group, a family member. When Martha was diagnosed in 1997, I was either too shy, too proud, or too busy to seek help. Fortunately, my significant contacts over those 17 years somehow seemed to arise on their own. I did try to find a support group but found none. An early gift came from our sister-in-law KK when she encouraged Martha to join her in a water-color painting class. Martha’s self-confidence, which had evaporated, suddenly re-emerged. You can see some of her paintings here.
The best gift I received came from our two older children, David and Rachel, after they graduated from college four or five years following Martha’s diagnosis. They gave me a weekend a month off, which I usually spent at a nearby monastery to vent, sleep, pray, argue with God, walk, meditate, read, share meals with the brothers while laughing at their jokes, or just sit quietly outside among the orange trees.
When Martha’s independence faded, I was most fortunate to be able to continue publishing our regional magazine, which was profitable enough that we could contract two daytime caregivers; they quickly became Martha’s good friends.
Whatever your resources—family, friends, financial, support groups, church, clubs—draw them into your radically altered life as soon as possible. Don’t be shy. Don’t be too busy. And don’t be proud.
Many needs arise out of a longstanding illness, as with our 17-year odyssey. A care partner’s greatest need, experience tells me, is to know and feel they are loved. Why? Because I so often felt like a failure in trying to cope with Alzheimer’s volatile symptoms. The one living with dementia has the same need. Loved by family and friends, loved by ourselves, loved by our partners regardless of the frustrations, and loved by that ever-present, intimate being many of us call God. This is much easier for me to write today than it was for me to experience then. But even today, it’s vital that I practice knowing that I am surrounded and infused with Love. My life depends on it. Do you get what I mean?
Finally, I remember these words from a friend early in our odyssey: “As you go through this, Carlen, remember to be gentle with yourself. Be gentle.”
There’s little that I will tell you to do, or can tell you. I’m better at sharing stories and ideas. But one thing I will tell you to do is this: Be gentle with yourself.
Until next time,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com
PS1 You may remember our conversation last Christmas with Geri and Jim Taylor in a post titled Her Strategies for Living Day to Day with Alzheimer’s. Ever since Geri’s diagnosis in 2012, the couple has strongly advocated for those with dementia and other mental disabilities. The Alliance for Aging Research recently honored them and their work with its “2020 Perennial Hero Award”. Their interview with the Alliance can be found here. Congratulations, Geri and Jim. Well deserved.
PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, there’s no charge; just click here.
PS3 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. But Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded before us, sometimes in strange and surprising ways, other times in the most ordinary of ways.
