The Cone of Uncertainty – What I Know About Grief

The Cone of Uncertainty – What I Know About Grief

When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.

Turns out, that’s also a way to describe how we grieve.

Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.

Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.

In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.

Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.

Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.

Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.

If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.

Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?”  You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.

Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.

Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.

Excerpt from The Dutiful Daughter’s Guide to Caregiving

Featured image by Carlos Koblischek

Are You Staying Hydrated?

Are You Staying Hydrated?

For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.

So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.

One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.

The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.

Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.

Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.

Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.

Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.

Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.

Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…

And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.

As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.

10 things I learned from caregiving

10 things I learned from caregiving

Not being a rainbow and pink unicorn kind of gal, I have to applaud the honesty of Ann Brenoff’s recent piece on HuffPost entitled, “No, Caregiving is Not Rewarding. It Simply Sucks.”  There isn’t a caregiver alive who can’t identify with that kind of bone-deep exhaustion, anger, and frustration.

Let’s face it, if given a choice, we’d rather the people we love remain healthy and vital forever, making this role unnecessary. But, that’s not how it happens, which brings me to the point of writing this piece.

As a family caregiver and working daughter, juggling the demands of a father with dementia and a mother with breast cancer and heart disease, there were often days I questioned my sanity, and ability to keep on. I fantasized about getting my real life back, then instantly felt guilty knowing what that would mean. I was doing too much. I wasn’t doing enough. Compassion fatigue, fractured family dynamics, and issues with paid caregivers often stressed me to the max, and every ring of my cell phone triggered a fight or flight response.

Yeah, a lot of it did suck, but there were also moments of clarity, purpose, and deep connection that might never have happened without the accompanying angst.

This is what I know, for sure.

  1. I believe in kindness, but don’t mess with me when my parent’s well-being is at stake.
  2. Digesting large amounts of medical information quickly? No problem. Hospital food?  That’s another story.
  3. Forgive the woo-woo, but part of my purpose for being here was to care for my folks.
  4. Not really a crier, the kindness of a stranger can still disarm me, every time.
  5. After six years as my parent’s healthcare advocate, there isn’t much that intimidates me.
  6. At the end, our deepest conversations may have little to do with words.
  7. Just being with my folks was sometimes more important than doing for them.
  8. Whether giving or receiving care, we all have a deep need to be understood and appreciated.
  9. Laughter and tears can both be ways of dealing with loss.
  10. You can ultimately see caregiving as a gift, and still want to return it now and then.

How about sharing a few of your own caregiving truths.

And by the way, the bird’s nest in this post is a treasured batik, created by my mom, Sally, many years ago.

Every aspect of your life

Every aspect of your life

This is so true… I can’t even put into words the feelings and thoughts that flooded through when I read this.

For those of you who don’t know, I spend an average of 60+ hours per week caring for my father and his wife. It has truly changed me.

I’ve learned what it means to be selfless and sacrificing, and also the guilt of learning how selfish I can sometimes be. Caring for them has become my entire life, everything revolves around them, then my family, then every once in a blue moon — there is a brief moment for myself.

I have seen life come full circle. And as hard as it is, (one of the hardest “jobs” I’ve ever had or will ever have again), I’m better for having experienced it…the good and the bad. I’m grateful that God placed me in a position to show His love and care for those that can’t care for themselves.

There is a part of me that struggles daily to cope with the emotional, physical, and mental toll it takes, but I have been entrusted with a great responsibility — one that is often unnoticed by others, harder than anyone will ever know, but worth every sacrifice to help someone who helped me for so long… Someone who still helps me, someone I wouldn’t trade for the world, someone I’ve been privileged enough to return the favor and care for, and I treasure the time spent together… Even on the rough days… because I know one day he’ll be gone, and I’d give anything to have another “rough day” with him.

I love my mom and dad (& their spouses) both very dearly! (This one is for you though, Daddy) – Katy Wright Nordlöf

Originally posted on Facebook

Thank you to my caregiving friends

Thank you to my caregiving friends

 

The subject of gratitude comes up frequently during conversations in my writer’s group for caregivers. Life has frayed us all around the edges, but we understand that each day is a gift, even if we want to exchange it now and then for something a little less ragged.

Occasionally, the topic comes up against the backdrop of the latest conflict here or abroad and other times it comes on the heels of a bad scare while caring for a loved one who is ill or aging. But after shaking our heads and finding terra firma once again, we release those frightening moments for just a little while, and instead talk about some of the things we are grateful for – having a mother who is still going strong at 90 and beyond; finally getting one good night’s sleep; still being able to laugh at the absurdities of life; or being able to carve two hours out of the month to share our writing with each other.

When I watch the this video by Brother David Steindal-Rast, I always come away with a deep sense of appreciation for all I have, especially the friendship of these amazing women who face their caregiving challenges with such grace and good humor.

Because of them, I’m reminded of the quote by Meister Eckhart, “If the only prayer you ever say is “thank you” that will be enough.

The caregiver’s toolbox – otherwise known as your purse

The caregiver’s toolbox – otherwise known as your purse

As you’ve no doubt discovered already, becoming a caregiver gives new meaning to the words “be prepared.” Why this isn’t the Girl Scout motto instead of the Boy Scout’s is beyond me. After all, the female of our species is expected to anticipate every situation. Look at our handbags. On an ordinary day, they not only contain keys, a wallet, and a makeup pouch, but also protein bars, bottled water, a cell phone, a damp washcloth in a plastic bag (no wait, that was my mother), and a mini pharmacy.

Judith at four in her caregiver-in-training days.

And when life changes dramatically, the contents of our purses tell that story. So it was for me when, in 2007, my elderly father slipped and hurt his back and my mother, at 85, was diagnosed with breast cancer.

At any given time, I carried:

  1. Hastily jotted sticky notes, which sometimes tagged along on the back of my pants as I ran errands. What amazed me was that no one ever bothered to say anything.
  2. A tube of Burt’s Bees colored lip-gloss. It gave my tired face a bit of garish color when I needed it.
  3. Twenty to-do lists. Some were written in my father’s methodical script, but most contained my own illegible scrawl.
  4. A pound of change for the parking meter at my mother’s rehab center. Twenty minutes for a quarter. About what my time was worth.
  5. A key ring to make a janitor swoon. It held twelve keys, including those to my office, house, and car; my parents houses and their safe deposit box, along with an assortment of scan thingies from Stein Mart and TJ Maxx for retail therapy.
  6. My cell phone. Instead of salivating like Pavlov’s dogs every time it rang, my body’s response was a spray of adrenaline up my spine that began to wear me out. To keep my sanity, I finally bought a different phone with a whole new selection of ring tones.
  7. Tweezers, for pulling stray chin hairs that literally appeared out of nowhere. They always caught the light as I glanced into my visor mirror while sitting in traffic. Who can pluck when everyone’s watching?
  8. A pocket calendar with laughably small squares. Imagine real life fitting into a one-inch box.
  9. A brochure for an assisted living facility my mother couldn’t bear to think she might actually need. I was beginning to wonder if I should apply.
  10. A relaxation CD my dear friend Anne sent me. Great stuff, if I only had time to listen. 

And, as if that wasn’t enough, I added:

  1. A variety of notepads and pens that I tended to leave behind like a trail of breadcrumbs.
  2. Copies of my parents’ HIPPA forms; durable powers of attorney; healthcare surrogate documents; and living wills. I never considered it ghoulish to carry their DNR’s (Do Not Resuscitate), as well. It is always about being prepared.
  3. A list of important family and medical contacts.
  4. A pair of foldable flat shoes. This may seem like an odd one, but when you have a parent in the hospital, the distance to the parking garage from their room will always be farther than you can walk in heels.
  5. Something to nosh on while sitting at the hospital, usually a plastic bag of homemade granola. Plain or on top of yogurt, it was often a healthier alternative to the hospital cafeteria offerings.

Last, but not least, I rarely went anywhere without my sense of humor. Because, at times, it would save me when nothing else could.

So tell me – what are some of the things you carry in your own caregiver’s toolbox?


Want to learn more about Judith? Check out her caregiver profile, connect with her on the forums, and look out for her upcoming book, The Dutiful Daughter’s Guide to Caregiving.