Loss, Silence, and Sharing the Burdens of Grief

How have you handled personal loss? Do you feel better in the company of others at first, or is your impulse to recede? As the first anniversary willow engravingapproaches, do you change course; do you share memories of your loved one, or observe rituals? How can you help someone you love share the burden that your mutual loss represents?

Now ask yourself the central question of this blog – Since you are the more able communicator, how does that scenario change when you involve children, elders in decline, and cognitive or developmental disability?  The grief that comes from a close, personal loss is not a pond that evaporates. It’s a wetland, a murky swamp that doesn’t disappear when it subsides, but fills back up in rainy season. When the loss is very dear, long-buried grief reemerges at awkward times to be re-experienced by you and other survivors throughout life.
Is Your Observance Personal, or Traditional?
We each have a tendency to share, or not to share, personal loss. Our preferences – what we do or say, and with whom – may change depending on whom we grieve. Do we feel we want to talk about the loved one, or not; to express grief in words, or not; to feel their birthday or death day deeply, or to keep the days as normal as possible; to light a candle, or cook 12-pray-for-the-living-and-deada special food, or go through photo albums. I have appreciated the ancient practice of celebrating life when feeling grief. (The traditional ancient Aramaic prayer for death is a poem with joyous words that do not include death, and whose meaning is lost in a memorized incantation.)

Feeling Deeply, with poor social skills
We who have intact abilities have a tough enough time with grief and loss. Now ask yourself, how does someone with a disability affecting thought or communication navigate these rocky shoals. When an elder becomes a dependent, should we change what we do in observance of loss? Should we bring up memories and names of family members, if they were not the topic of conversation before? How? When? How will we know if we have stirred things up that were better left unstated?

The Next Generation, not always surviving
Rituals and choices about loss and grief tend to get set within a short period of the family’s loss and vary little after that, especially when someone in the family died too young, and long ago. My husband died when our son was very young. More than a decade later, his father died, not young and not unexpected, but with his full faculties intact, after caring for his spouse for many years. With no explicit discussion of grief with my mother-in-law, beyond the first month after her spouse had died, I brought her grandson as living evidence of him and our our shared losses. Their family photo albums were not mine to share, since my late husband took few pictures himself. This grandson wasn’t a passive token, being an active, willful, special needs teenager. My attempts at engaging grandson with grandmother, when both had communication impairments, was delicate. He would present pictures of his current life to keep him interested, and I aimed for a reciprocal relationship between them.

Talking about the Unspeakable, even when you cannot speak
The challenges the person with a cognitive impairment faces include – visual reminders for conversation, what subjects to discuss, how to form a narrative, who is a safe person for expressing grief – in short, who will make the tough conversation easier. But it only occurred to me (after a new loss in the family) that I hadn’t changed or questioned familial roles subtly negotiated over a decade ago. The death of my husband, about which I had not spoken with his mother for a decade, had a different cast after the death of his father/her spouse. It changed again after other family losses. It became yet another situation after her cognitive decline.

What Are Your Assumptions about Who Brings “It” Up?
Until recently, my assumption of roles in handling grief was three-tiered and generational. First, it was my job to help those younger than myself in sharing their burdens. Second, with peers, I would perform a quick check on the subject of loss, and the other person could continue or drop it. Third, I assumed it was the role of an elder to open the subject, to bring up the name of the loved one, or to tell the old stories.

Mea Culpa
About elders, I have been wrong; I should have renegotiated our unstated roles as each declined. I could have asked more questions of the elders, as simple as, “What do you remember about him, or her?” In negotiating grief, I had forgetten what I knew about communication disorders. I continued to leave it to the person with memory loss and communication impairment to bring up our loved one’s name and the memories.

About peers in the family, I had blinders on. Each handling his or her own grief about our elders, I could have asked more questions about how their new burdens were changing their pre-existing grief. Sometimes, I’d get a glimpse of this process, and acknowledged the matter but then dropped it.

Visual Aids
Around children or anyone with impairments, in the future, I will be more even-handed. The impaired person needs more support. Photograph albums, if we have them, are more appropriate for leveling the plane of communication in presence of a disorder. I could put as much effort into making memory books to sustain our elders as I might with a child who is building them.

A reminder to my son each time before we went to see his grandmother helped: We don’t know how much more time we have with her. Let’s use the time we have, as long as she’s here.

Living Each Day as If It Could Be the Last…
… has become a cliche. It’s the human condition that we don’t get a second chance with those we have lost to apply what we learned in losing them. I’ve learned to end each visit, or phone call as positively as possible, regardless of whether it’s with someone younger or older. There may not be a next time.

Please leave a comment about who and how you may have shared experience of loss with other people, or if someone has reached out to you effectively. Peace.

Grief is crowned with consolation.
– Antony and Cleopatra – Shakespeare.

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