Time after time I hear this story: one adult child, often the eldest daughter or the child who still lives in the same town with Mom or Dad, becomes the primary caregiver, while the other siblings fade into the background.
Some of the problem may be due to predictable birth-order patterns: the oldest child is the “responsible” one, while the middle child(ren) feel lost and the baby is, well, babied. Some of it, no doubt, is the practical logistics of being geographically closer and more accessible when the elder needs something.
Some part of it, I suspect, is that the level of caregiving required to keep a memory-challenged elder living independently is so detailed, intimate, and daily (if not hourly), that the primary caregiver accumulates a small mountain of knowledge about how to keep the elder’s life on track. How much water does she want in the glass when she has to swallow a pill? Which pair of eyeglasses is best for watching TV? Which spoon do you use to feed the cat? What sweater does he want when it’s cold, and where is that sweater likely to be? What wattage of light bulb is too dark or too bright in the back hall?
Siblings coming into town to help for a weekend lack all this inside knowledge and make mistakes, probably make the elder grouchy, and make themselves even grouchier. If the “primary” is around, she’ll probably be correcting all the time: No, get the brown sweater – it’s in the hall closet…keep her pen right there by the phone so she can find it…don’t lock the back door with the deadbolt – he can’t get it open. And on and on.
Our little Memo can help with some of the practical aspects of keeping siblings informed and up to date on the daily particulars of the parent’s life. If they do no more than read the Memo day after day, they will get a very real picture of what’s going on in Mom’s life. They will see Memo repeating one day, “Your skin cream is right by the kitchen sink.” They will know Mom needs her skin cream but can’t find it, and they will know where it is.
That, of course, will not solve deeply-ingrained family problems. I spoke recently with an oldest daughter, a primary caregiver, who was so angry with her siblings that her words were not so much spoken and as they were spit out. Her mother had been hospitalized, requiring her to leave work and practically live at the hospital for three days. Not only did the distant siblings stay home instead of arriving to help out, but they criticized her for failing to deliver timely reports on their mother’s condition.
It was clear that this was not a new skirmish, but the latest battle in a long-term war, with emotions and relationships about to go nuclear. I know her plight is real, and I know it’s extremely common. I hear it all the time. Less frequently, I hear from the siblings, usually that they’d like to help more, but they don’t know how, they have families to raise, they’re so busy at work, they live so far away, and “Primary” (whoever he or she is) has it all under control.
Perhaps one of the ways Care Managers could be helpful is teaching primary caregivers the language they need to address these problems directly with siblings, and helping them find the courage to do so. I suspect that would require major realignments of identities and relationships within families. But birth order is not destiny: oldest sibs can learn to let go, middle children can take the lead sometimes, and babies do grow up. Victims can stop being victims and slackers can step up.
Someone out there is capable of writing a good book on this topic, and it’s going to be a hot seller. Who wants to be the next Dr. Phil?