Tuesday, April 21, 2009

New sibling loss memoir

I stumbled on this write-up of a new sibling loss memoir, Invisible Sisters, by Jessica Handler, thanks to Google Alerts....I haven't read it yet, so I can't really weigh in, but it sounds interesting.

Wednesday, April 15, 2009

A brother sums it up....

I didn't know of Dan Miller, an anchorman on Nashville's WSMV-Channel 4 evening news. I learned about him, and his recent death, from a heart attack, through Google Alert. (My good old Sibling Loss alert at work again.) I was reading a little item about his memorial service, though, and came across a nice graph about the words spoken by Miller's brother, Lynwood.

"Lynwood Miller said losing a sibling is a different type of loss. He said that it was like losing a piece of his childhood, losing someone who knew 'who we were' and 'who we are.'"

I lost my brother young, and never got to enjoy the adult sensation of being known that well by someone. I often grieve not only for the loss of my brother, and all that we were, but for the sibling experiences we never got to have.

A new book for the brothers and sisters of people with Down syndrome

“What causes Down syndrome?”
“Why do people stare at my sister in public?”
“How do you deal with people who use the word ‘retard’?”
“Where will my brother live when he gets older?”

A new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters (Woodbine House, February 2009), answers these questions and more. Aaccessible to kids as young as 11, the questions in the book are based on brother-and-sister workshops led by its co-authors Brian Skotko, MD, MPP, a physician at Children’s Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker with Family Resource Associates, Inc. (Shrewsbury, NJ).

The book tries to fill in a long-standing gap: Resources and support services are geared toward parents, not siblings, say Skotko and Levine.“Oftentimes, siblings exist in emotional isolation – they have so many questions about Down syndrome and the feelings they are experiencing toward their brother or sister. They frequently wonder whether it’s okay to feel not only love and joy toward their sibling but also frustration and embarrassment, at times.”

Check it out.

A disappointing response...

I have my Google alert set to send me newspaper articles and mentions of sibling loss. Often, what I get is a pair of banks or companies being described as siblings, i.e. Freddie Mac and Fannie Mae. But recently I got a letter to the expert type of piece that appeared in The Connecticut Post. It touched on an area I’m interested in—and that’s very under-studied: Sibling loss at an older age.

I haven’t done a ton of digging in this area, but what I have done suggests to me that it’s every bit as painful to lose a sibling when you’re older as when you’re younger. (That, “well-they-had-a-long-life” never makes anyone feel any better.) In this case, the “expert” responder sort of got it, but had no idea what to do with it—so she punted and went with a topic she’s comfortable with, i.e. the importance of taking your medication.

I was…disappointed…in her answer.

Here’s what the person wrote in:
I hope that you can help me convince my mom to start taking her pills again. She went through a very traumatic experience with the passing of her sister. My mom and her sister were very close. Clara was nothing like my mother -- very organized, educated and always following the doctor's orders. She was considered healthy with only some blood pressure problems and occasional back pain.

She was taking all of her medications, went to her checkups and got a flu shot every season. She was the one to scold my mom for her casual approach to her failing heart (my mom was diagnosed with a weak heart and congestive heart failure three years ago). To my mom she seemed indestructible. Four weeks ago, my aunt passed away unexpectedly. She had a massive stroke. She was gone within less than a week.

She was not even 76 yet, and my mom is the older one at 80. Now my mom is very upset with doctors and will not take her medications. "What good is it -- Clara did everything they told her to do and look what happened!"I worry that she may be depressed, but I also worry about her heart. Please give some advice on how I can get my mom to believe in doctors again.

Dr. Beata Skudlarska, the geriatrician the paper tagged to answer this person, starts off pretty well. “I am truly sorry for what has happened to your mom, and of course to her sister,” she writes. “The loss of a loved one is always tough; it is even worse if you lose your sibling and a role model.”

Good so far. But then she goes off on a tangent that left me a little incredulous. “Maybe your story can give us a constructive opportunity to explore some important concepts about the reasons we take medications.”


She then goes off on the reasons we take medication (i.e. to stay healthy). Okay. First of all, I think most of us know that, and we didn’t pick up this Q&A because we were looking for a lesson in taking our meds. Secondly, after briefly acknowledging the problem—grief, loss, depression—she goes on her own riff, basically ending by saying this person’s mother is bound to see reason eventually and buck up and take her meds.

“Your mom will recover from this,” writes Dr. Skudlarska. “She is resilient.” (Um, how does she know? ) “I am sure she will get better and resume her medications. I am deeply touched by your story.”

I’m sure Skudlarska was touched, but she wasn’t listening, and as a result, I don’t think she helped at all.