On Grief & Recovery

09/05/2015

Getting Lost in Grief

Navigating life while dealing with death can be like finding your way to an urgent appointment — in a new country …

Where you don’t understand the culture — or the language …

While operating a vehicle you’ve never driven, flown, or sailed before — and while responsible for a dozen kids, their gear, and their pets …

All yelling, “Are we there yet? How much longer?”*

And you were supposed to be there yesterday.

You could pull over to ask for directions — if you could find a passerby with whom you can communicate.

You could call someone who has been there before — if you hadn’t just unknowingly crossed a border not included in your phone plan. If you had any service bars available. If you had your charger with you.

Getting lost in grief

Getting lost in grief, photo by Teresa TL Bruce, TealAshes.com

“The grief journey” is one description for the process of learning to live again after a loss. It’s not like vacationing to experience new scenery or to reconnect with family origins. It’s more like traveling through J.R.R. Tolkein’s Mordor, but without a noble quest. There’s no loyal Samwise Gamgee for unwavering companionship — those on the journey are there because a beloved one has been forever left behind.

Travelers on the grief journey constantly ask themselves, “Where am I? What am I doing here?”

Have you ever forgotten where you were going (while halfway there)? Ever been so lost you had to approach a stranger for directions,  or call a friend to talk you through your route, or pull out a map — even while using GPS?

There was no map to show me the way from life with my husband to life without him.

I’ve always been prone to “creative” navigation from Point A to Point B via unintended alternative routes. My husband and kids found it amusing, though sometimes annoying, that I could find my way through any area — once I’d already been lost there.

After he died, when the shock of grief was new and raw, I couldn’t locate familiar, close-by places; less familiar, more distant destinations were all but impossible.

The interstate was easy to reach, just two turns from my street. But I can’t begin to count how many times I found my widowed self turning too many blocks before I got there. Or half a mile past it. Or not remembering where I’d meant to go. (In hindsight, that was a good thing. I had no business driving at highway speeds when I couldn’t even figure out how to reach it.)

Physically, I was lost all the time. Emotionally, I was just as lost.

In the early months, I was so lost I even blurted my grief whenever I approached strangers. (Most of my widowed friends have said they did the same.) It was as if telling the grocery store clerk, the librarian, and the receptionist “My husband died” was a compulsory password to activate my grief processing symptoms — my distressing, personal GPS.

In time I learned to call on others who’d been there; they’d also lost their spouses. They talked me through how they survived the upending of all they’d known.

Slowly, oh, so slowly, I began drafting my own mourning map.

It took more time than I would have expected to be able to find my way again. It took more time than many of my friends expected, too.**

Be patient with your grieving friends as they relearn how to navigate their altered lives … and offer them rides whenever possible.

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*See my earlier post called Are We There Yet? (How Long Does Grieving Take?)

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**Speaking of my friends … I’d like to thank Bettie Wailes, Doug Grossman, Nylda Dieppa, and Liz Collard for their feedback — and patience.

08/12/2015

Are We There Yet? (How Long Does Grieving Take?)

“Are we there yet?“ — one of the most annoying questions parents hear. Invariably, no matter how long remained was too long for our children. When they were young,  we sometimes answered that if they asked one more time, we’d turn the car around and go back home.

clock with fallen numbers

“who cares?” clock face created and photographed by Teresa TL Bruce (TealAshes.com)

On a few occasions, we circled back to where we started, postponing the excursion for another day.

Their petition came regardless of our destination — rare, days-long, out-of-state road trips; frequent, up-to-an-hour-long, crosstown errands; or thrice-weekly, around-the-corner church meetings . All drives were apt to include variations on the dreaded question.

In hindsight, I realize our kids were eager for the fun to begin (or at least for the end of being strapped into car seats and belts while motion sickness churned their tummies). But while we were behind the wheel, our focus was to convey everyone safely from point A to point B. (If I could manage not getting lost when I was driving — ha! — so much the better.*)

Maybe asking “When will we get there?“ reflected part of our kids’ intellectual development, too. They were still learning the basics of how time flows and is measured. They were learning to anticipate upcoming landmarks on familiar routes and weren’t yet able to estimate the amount of time it would take to reach the next location they could relate to during their journey.

And at that point in their lives, they lacked the experience to realize (or in some cases to care) how annoying it was to be asked.

We were more worried about reaching our destination intact than in time. If the Bruces were late, we were late … as long as we didn’t become the late Bruces in our attempt to arrive.

Sometimes detours or road conditions made our best estimates to “How long is it gonna take?“ woefully wrong. (And, oh, did we hear about it!)

Then life’s day-to-day travels crashed into the worst kind of unplanned detour. My husband died.

My estimated arrival times died with him.

“Are you better yet?“ — one of the most annoying questions mourners hear. With precious and dear exceptions, no matter how recent my bereavement felt, it seemed to take too long for those around me. When my grief was still young, I first answered bluntly, “No, of course not.”

If the same person asked more than once, I soon learned my frank answers disappointed them; disapproval showed in their expressions, voices, and words. I turned myself around when I saw them (or their phone numbers). That I was “still” not “better” (meaning not yet my former, pre-widowed self again) shamed me into silence about my real feelings. (Grieving was hard enough without being made to feel I was doing it the wrong way.) I put on my plastic smile and said, “Mm-hmm” — and got away from them as fast as I could.

In hindsight, I realize my friends were still learning the basics of what it meant to be around someone who’d lost a loved one. And they were eager for my sadness to end (as evidenced when I cried my way through conversations). But while I fumbled my  way through learning to cope with life-altering loss, my focus was simply to endure a single day from one moment to the next.

Any planning, any  estimation, any sense of the “when” of things was beyond my capacity. Death detoured my timing in every way. It slowed me down. (I know others who fell into fast-paced flurries of keep-busy actions to try to keep their grief from catching up with them; it sometimes worked — temporarily.)

It took me twice as long to do the dishes (when I remembered to cook — or to eat — and the two didn’t necessarily happen together anymore). It took me twice as long (or more) to get dressed in the morning. Four times as long to pay the bills and attend necessary business transactions. And getting to sleep or staying asleep … (sigh). Let’s just say my internal sleep clock has been at the repair shop for several years now …

I had a trouble estimating how I’d fare on the other side of the next five or ten minutes. Figuring out what would happen another day was tougher. What would the next week hold? (Thinking that far ahead made my head hurt almost as much as my heart.) The following month? Ha! (In case the italicized “Ha” with an exclamation point didn’t convey it clearly the first time, let me repeat. Ha!)

Questions about my five- or ten-year plans were as impossible to answer as “When are you going to act like normal again?“

Maybe asking “When will you be done with grieving?“ reflected part of my acquaintances’ empathetic development. They were still learning the basics of how grief flowed and ebbed around time-warped detours on an unfamiliar journey they couldn’t relate to. Yet because of what they observed in how I grieved my husband, they were awakened to an uncomfortable realization: they would someday lose a loved one, too.

Their need to ask, “So, is everything okay now?“ stemmed as much from their lack of experience with grieving as it did from their genuine concern for me. And at that point in their lives, they had no way to realize how annoying it was to be asked. 

Instead of asking your grieving friends how long it will take them to “get over” their bereavement, assure them you accept them and support them no matter where (and when) they are in their grief.

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*I’ve been known to get lost even when following GPS directions. In a future post I’ll share more about getting lost in other ways while finding my way through grief.

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07/16/2015

Putting the Widowed in a Box

I went for a checkup yesterday. I hadn’t been to that provider since the year my husband died, so I had to fill out a new medical history. How difficult filling out such forms used to be (and sometimes “still” is)! If you own or manage a business that requires personal information of its clients, make sure your paperwork and/or website includes “widowed” as a category.

At least this form offered me the option of "Other" where I could write in my own category: widowed.

At least this form offered me the option of “Other” where I could write in my own category: widowed.

I can’t count the number of times I sobbed through inadequate, limited options during the first year and a half after his death. (I do remember specific waiting rooms where people were leery enough of the crying woman to move to the other side of the room, sending not-so-furtive glances my way.)

When I was newly widowed,  EVERYTHING reminded me of my loss. It was hard enough coping with grief on a daily (sometimes hourly) basis. I hated having to acknowledge my husband’s death in clinical black and white on the many forms I had to fill out — and there were a LOT of forms. It was excruciating to complete paperwork that ignored the existence of my life-altered status.

  • I was not “single.” (I’d been married for 24 years and hadn’t done anything that changed or negated that. Neither had my husband — except for his dying.)
  • I was not “divorced.” (See above.)
  • I was not “married.” (Even though both of the above still applied, my spouse was no longer there — he was NEVER coming home.)
  • I was “widowed.” (Still am.)

Too often, company  (and government) forms offer no appropriate box for widows and widowers to check under “marital status.” On paper I write in my own category, even when there isn’t an option (or enough space) to do so. But online forms can incite scream-inducing, option-lacking frustration.

(And yes, during that first year or so, I sat at my computer and screamed at such websites — and at whatever offices or organizations had sent me to them — even though I had never been a person who screamed. But I’d never been widowed before, either.)

It has been nearly five years since my husband died. Socially, I’ve come to see myself as single again — most days, anyway.  But legally, “widowed” still feels like a better fit.

I still check the “Mrs.” box (rather than the ones for Ms. or Miss).* Online, that often opens a dialog box for my husband’s contact information. (Good luck trying to reach him, I think.) If I leave blank his current address and phone number, or type “deceased” (or, when I’m in a snarky mood, if I enter the word “cemetery”), such sites red-line my responses with please submit a valid phone number and street address. (Sometimes that makes me want to scream again.)

I don’t appreciate paperwork forcing me back to the start, forcing me to redefine myself according to its guidelines.

As a widow, I’ve had to do enough starting over — and redefining — for myself.

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*If you don’t know what a widow prefers to be called (Mrs., Ms. or Miss), ask her. She won’t bite, and she’ll appreciate that you respect her enough to want to heed her preference.

07/01/2015

Taboo Topics When Someone Dies–Part 5, Legal Status

When someone dies, what should you say to surviving loved ones about their legal status?

[While you wait for the answer, listen for sounds of shy, exhausted crickets …]

[… and wait …]

[… and wait …]

Is the silent treatment getting a bit uncomfortable? Only slightly? Then let’s wait a bit more …

[twiddling thumbs]

[looking around the room, avoiding eye contact]

[clearing throat to break the awkward silence]

… and … you’re still waiting, aren’t you?

Get used to it, because I can’t think of a single thing it’s appropriate to say about the legal status of deceased loved ones — or their survivors. Broaching the subject will cause far more discomfort than a pregnant pause.

What seems like a gazillion grief years ago, I started a mini-series of posts on taboo topics* with these assertions:

All grief is personal, but please don’t impose personal comments on the newly bereaved.

Unless the mourner asks you, or it pertains to your already established professional relationship, don’t bring up the bereaved person’s politics, religion, money, physical appearance, or legal status. 

Last week’s Supreme Court ruling on marriage equality reminded me I hadn’t yet posted about why legal status is a taboo topic if you want to console the bereaved. When your relative, friend, or colleague has lost a loved one, the only legal certification that should matter to you is the word deceased. 

Whether you’re a fundamentalist Christian preacher or the chief organizer of a pride parade or a number-crunching hospital administrator, whether the departed and their surviving loved ones are old or young, gay or straight, zealots or atheists, when you learn that someone died, your only concern should be to offer nonjudgmental consolation and comfort in any way you can.

  • Do estranged surviving spouses suffer more distress than long-term partners who stood by loved ones in unwavering fidelity? Should one group have a say in making funeral and other arrangements while the other has no say?
  • Does it matter to a mourning mother whether her child’s birth (and death) was connected to her by biology or by adoption? Does a father who truly fathered a stepchild (by day-to-day manning up to meet his kids’ emotional and physical needs — whether he legally adopted them as his own or not) grieve less fervently than one whose birth certificate – documented “fathering” was over and done with long before that child died?
  • Do bereaved best friends (who talked twelve times a day) deserve less consolation and consideration than surviving siblings (who exchanged little more than annual Christmas and birthday cards)?
  • Do legal residents mourn departed kin more than people without papers do?
  • Do felons (or their families) deserve less respect and support when someone they love dies?

Of course not.

Grieving has no limits graphic compiled by Harmony Bruce

Grieving has no limits graphic compiled by Harmony Bruce

Grief is an outcropping of love. When death severs us from those we love, grief pours from the wound. Like love, it cannot be legislated into neat little boxes on government-issued forms. What can be, and should be, and now has been legislated, is greater ability for people to decide who will deal with the business and legal sides of their final goodbyes.

Whatever the mourner’s legal status, whatever the legal definitions of relationships between people, it’s not up to anyone else to concern themselves with the details. For the rest of us, our job is to simply say “I’m sorry” and to show up without comment, bringing with us only our kindness — whether that’s demonstrated by casseroles, consolation, or (if appropriate) even cash.

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*To see the first post in the taboo topics series, visit
Taboo Topics When Someone Dies–Part 1, Politics

06/16/2015

Grieving Lost Minds: Go Purple for Alzheimer’s and Brain Awareness Month

“Have you lost your mind?” For most it’s a rhetorical question, but for 47 million people, the answer is a tragic yes.

I’m not talking about “losing your mind” in heated moments when stress clutters thinking or when you’ve reacted rashly during a brief lapse in judgement.

I’m also not talking about the fog of grief that messes with your mind after loved ones die (although as a new widow I felt I had lost it).

I’m talking about dementia, a general term for impaired thinking caused by brain damage — dead brain cells. Whether dementia patients suffer because of injury, illness or age, they have literally lost parts of their minds. And that loss inflicts a unique grief.

I’ve written and rewritten this post for two weeks because, as much as I wanted to put the information out there, the topic is too close to home for me.  (More on that later.)

According to the Alzheimer’s Association, June is “Alzheimer’s and Brain Awareness Month,” and purple is its color.  You can find more information, including facts and ways you can help, by visiting their website here:
http://alz.org/abam/

Global facts and national statistics are important, but the devastation of dementia  is personal. It erodes people of every age, and it damages the health and well-being of patients’ families, too.

The grief and frustration of dementia come from living with two (or more) symptoms of life-impeding mental deterioration:

  • short- or long-term memory loss
  • illogical thinking or diminished reasoning
  • skewed sensory perception
  • unfocused attention
  • mangled communication

In many cases, patients recognize their own decline and grieve what they know they’ve lost. Let them know you recognize areas of cognition they still have.

Let them know you will “be there” to step in with them in whatever areas they need help in.

Let them know they can count on your friendship.

Other sufferers don’t recognize their own impairment and may resent the necessity of being cared for by others.  Caretakers need as much support as the patients.

I did.

My familiarity with “brain awareness” stems from other dementias which afflicted beloved, once-functional minds in my family.

I cared for Mom when breast cancer metastasized into her brain, and I catered to (and placated) her father when age dulled and bent his once razor-sharp mind. I listened as relatives on the other side of the country tended to spouses with mental deterioration from specific illnesses. I worked alongside family (and a wonderful home health aid) in dealing with my almost 95-year-old great-aunt’s diminished mental capacity.

And I endured the 24/7 stresses of my barely middle-aged husband’s mental deterioration.

He was 45 when symptoms appeared. At first, I didn’t realize my hubby’s occasional absent-minded lapses were evolving into debilitating short-term memory loss. One month he was “distracted” while paying bills,  and he mailed checks to company A (in amounts for company B’s invoices) inside envelopes addressed to company C. He returned from work or short errands with our car displaying an increasing number of dings, scrapes, and dents. (I later learned his spatial processing was amiss. More than once he “emptied” large, full trash cans “into” smaller, already full wastebaskets. Not successfully.)

By the time his boss called to express concern, things were worse. If asked to perform simple, familiar tasks in their necessary 1-2-3-4 sequence, my husband would dig right in — beginning with four, but completing it poorly. On good days he might then remember to do the first step (now out-of-order), but items two and three? — not at all.

A few months after that call, my husband began what we both hoped would be temporary medical leave as we sought answers and treatment for these (and other) increasingly bizarre symptoms he displayed. He was 46 when a neurologist, one of many doctors we’d seen, made a casual remark including the phrase, “… aside from your husband’s obvious dementia …”

(If my life had a soundtrack, this is where the record needle would SCREECH.) The voice in my head screamed, WHAT?!

I didn’t hear the rest of the neurologist’s sentence. I had to ask him to repeat it. 

Dementia?! That’s for old people, I’d always thought.

I had a lot to learn, and the school of experience was a harsh teacher.

Here’s what I wish I’d known then about how to support people who do or don’t recognize their own dementia — and how to support their exhausted, emotionally drained caretakers:

  • Give them a break. When one person cares for another round the clock, it gets to be too much. TOO MUCH. A change of face can give a boost to both the patient and the caretaker. Even if the patient is confused by the change in routine, even a brief respite can make a world of difference. Offer to sit with the patient (and show up) so the caretaker can get out and about. Or if health permits, take the patient to the store or out for a walk so the caretaker can tend to self-care or other tasks difficult to do with the patient.
  • Don’t take “no” at face value. Your help is needed, whether it’s asked for or not. I don’t mean for you to bully your friend into accepting the above offers, but be persistent and creative in finding ways to help that your friend can live with. If they won’t let you bring in dinner, send them a gift card (or even just a note of encouragement) in the mail. Do something.
  • It’s not worth fighting over. Patients with brain impairment see the world in illogical ways. Their warped perceptions are as vivid and real to them as yours are to you. Arguing to “make” them see reality is both pointless and cruel; it further upsets and agitates everyone, including those with already confused minds. Humor them whenever possible.

Here’s an oversimplified example I’ve fictionalized (by altering details) from one true situation. The father in this scenario, a retired teacher, is anxious and fidgety. “I don’t want to be late. They’re waiting for me.”

His adult children ask, “Who’s waiting, Dad?”

“I have parent conferences today. I need my students’ files so I can get their grades out.”

Each time the son says, “Dad, you retired ten years ago. You don’t have any students. You don’t have to go anywhere,” his father becomes more agitated.

When the daughter says, “Dad, it’s great that you don’t want to keep anyone waiting. You’re always on time. The parent-teacher conferences are done now. You turned in all the paperwork and grades before break started,” Dad (hopefully) is appeased, at least temporarily.

  • Safety first. Having said what I did about humoring the dementia patient, help the caretaker ensure safe practices. Enlist a doctor, home health aid, trusted friend, or neighbor to take away car keys when judgement or reflexes make driving unsafe. Install safety locks and/or alarms on doors and windows for patients prone to wander at 2:00 a.m. Remove the knobs on the stove in homes where a burner might not be turned off again. Lock up prescriptions for those who may think it’s a new day every time they doze off and take a week’s worth of morning medicines before afternoon.
  • Listen up, and let the tears flow. Crying can offer a healthy release of emotion for both patient and caretaker. The loss of mental function creates ripples of grief as caretakers mourn a myriad of associated losses. Future dreams are abandoned when a loved one’s personality dies bit by bit, changing their dear one into a helpless or demanding “stranger.”
  • Repeat. Whatever support you can offer will be appreciated and will make a difference, but as their loved ones’ ongoing deterioration chisels increasing degrees of independence and personality from them, your friends will need your help again.

And again.

Till death does them part.

Then the caretakers will need your understanding — again — as the permanence of new grief kicks in.

When that happens, don’t tell them how happy they should be their loved one no longer suffers.

Don’t ask if they’re relieved their responsibility is finally done.

No one should be made to express or justify grieving emotions until (or unless) they feel ready to do so. Just be with them in the meanwhile.

#ENDALZ #GOPURPLE

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Each summer solstice, the Alzheimer’s Association sponsors The Longest Day to raise awareness (and funds). For information on this year’s team-oriented event (June 21), visit
http://act.alz.org/site/TR?fr_id=6650&pg=informational&sid=20684