Grief across the lines

These letters appeared in the Washington Post, in Carolyn Hax's column, back in March, shortly after Shannon died. The first deals with the grief of a family, following the death of a family member, and the sheer exhaustion that results from the well-meaning 'intrusions' of friends and family, into someone's suffering and dying and the family's grief. It resonated with me because the process, and the feelings, don't seem so different than what a family that has lost a baby goes through. Of course, the situation is different because Shannon didn't have a circle of friends that went through the dying process with her, but the exhaustion and the grief felt by the family that was left to forever carry her loss with them while the rest of the world moved on, still is....

The second deals with someone who was diagnosed with cancer and was dealing with the fact that none of his/her friends wanted to address the simple reality that they might die and that there were things that the friends could do to help the sick person in dealing with that eventuality. Avoidance of other people's grief and need is wrong. It is also all too common. The family of a deadbaby deals with a lot of the same denial and outright avoidance from their friends. At the time of Shannon's loss, I was feeling it quite acutely. I still feel it today, but it is a lower level hurt, like that white noise hum, it's always there, but I don't always notice it.

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¿ On the other victims of terminal illness, the caregivers:

My mother died last year from cancer. Most people refused to believe she was dying. My mother knew a lot of people and had many friends and admirers. Of course, they all cared about her and wanted to be supportive and see her. My dad and I bent over backward trying to accommodate everyone. We were trying to do the "right" thing. If I had it to do again, my father and I agree that we would limit if not outright bar visits in those last few months.

While people's intentions are good, they need to recognize that sometimes their presence is more of a burden or outright detriment to the ill person's well-being. My mother had to summon extra energy to appear "well" and reassure people.

My mother's best, best, best friend is a wonderful woman whom I still respect and adore. However, she practically demanded access and if we tried to politely sidestep, she would just show up at our house at 10 p.m. trying to "catch" my mother. She would then stay while being completely oblivious to my mother's fatigue. Our friend was scared and wanted to be present. We understood that. Truthfully, though, she was also being selfish. She needed the comfort of seeing my mother, but that's not what my mother needed.

As politely as he could, my father finally had to tell my mother's best friend and her husband that my mother really needed more rest time. Her best friend had her nose completely out of joint because of this. The husband, however, understood and intervened on our behalf.

Intrusiveness is also hard on the caregivers. My dad and I basically ended up entertaining. We would be up all night taking care of diarrhea accidents, medications, trying to keep my mother calm during paranoid moments, then turn around and have to spend the daytime being social coordinators. Would visitors feel included and comfortable being there for incontinence or screaming/crying delusions, too? People want to pick their moments and that's not fair.

Sometimes it's simply not appropriate and oftentimes those inappropriate periods can go on for quite a while. As a patient, would you want everyone seeing you at your "worst" and feeling judged and gossiped about? We knew we'd be the bad guys if we restricted access more.

Knowing that, I'd still absolutely do it if I had the chance again. If nothing else, I didn't really get much time with my mother those last few months. There was always someone in the house and I didn't have the opportunity just to sit with her and talk. I so regret that.

The truth is that all of those people have gone on with their lives. As much as they cared and loved her, they don't live with her death day in and day out like I do. We were her family and we feel it at every holiday, every milestone, and during every daily, mundane activity, like eating dinner without her. They don't.

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and, another one.....

Dear Carolyn:

I was recently diagnosed with an aggressive cancer and have been dutifully if miserably going through treatment. The prognosis? Who knows. The whole "every day is a gift" thing has somewhat cruelly -- and somewhat wonderfully -- become a daily, waking thought. How do I get the people in my life to confess out loud that this could, and in all likelihood will, kill me? Everyone around me is insistent on being optimistic and denying the truth that this disease kills people every day, and I could be one of them. I try to talk to them about what will happen to my things, and what their plans are when and if I die of this, just as if I were hit by a bus, but they stick their heads in the sand and refuse to have the conversation with me. Carolyn, I could die from this. I will die someday. These are both factual statements. So why will no one discuss it with me? -- V.

I am sorry. I am sorry about the cancer and the miserable treatments and, in the spirit of your question, I am even more sorry that your well-meaning but cowardly intimates have left you no choice but to suffer alone.

Your question is, why? And my answer is, I don't know. I can guess, though: You live in a society that can't get enough of fictional death, but prefers the real thing to be pat, antiseptic and (this is key) offstage. The difference may be as simple as the ability to click "off" when the emotions start feeling too real. The only thing we have to fear, apparently, is awkwardness itself.

You probably can't call people cowards as easily as I can -- you want openness about your impending demise, after all, not enthusiasm. However, I do think you want to use almost that level of bluntness to get your point across. As your "somewhat wonderfully" observation suggests, you have clarity, urgency and courage on your side here.

Gather these up, then recruit two more allies: specificity and selectivity. Narrow down exactly what you need, zero in on the person who represents your best shot at a straight answer, then ask. For example: "I will need someone to distribute my things. Will you please help me?" And when you get the oh-it-won't-come-to-that answer: "Yes, it will, and you will die someday, too, and I feel better talking about it than avoiding it. Will you please help me?"

And when heads start hitting the sand: "Can you explain why you won't help me?" Clearly this is pressing someone well beyond the point where, under normal conditions, I advise backing off; you can't "get" anyone to confess, or even pretend, anything. But these aren't normal conditions, and your needs warrant extreme measures to flush loved ones out of hiding -- as a favor to them, I could argue. Target the overlap between people you trust, and people who have said to you, "If there's anything I can do . . ." Collect on these offers, and tell people you're doing it.

Ideally, it wouldn't come to this, I know. Ideally, people wouldn't try to escape life's inescapable fact. But, ideally, you wouldn't be sick. I am so sorry you are. As you've been with cancer, be with people: unflinchingly matter-of-fact.