I love serendipity (or “serendestiny,” as Sam Horn calls it). I keep an eye out for it in all aspects of my work and life. Late last year, I 
attended a party for the launch of Donna Fenn’s excellent book, Upstarts, in New York City. At that event, serendipity hit in the form of Francine Russo and her new book, They’re Your Parents Too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy (Bantam, 2010), which is a must read for everyone with parents and siblings.
Shortly after arriving at the party, Donna pulled me aside and introduced me to Russo saying, “You two have to connect. Francine has just written a terrific book on elder care.” Five minutes into my conversation with Russo, I was hooked. I only wish They’re Your Parents Too! had been written two years ago when my sisters and I cared for our mother until her death from cancer (here and here for posts recounting that experience).
In addition to being incredibly well-written (Russo is a career journalist who most recently covered the aging and boomer beat for Time magazine), it addresses many important issues that my sisters and I intuitively navigated blindly. Our elder care experience, while rewarding and very challenging, was aided by the fact that three of us get along well, had flexible work+life fit realities, and lived relatively close to our mother. In many instances, this is not the case which makes Russo’s book even more valuable.
Recently, I spoke with Francine Russo about They’re Your Parents Too! Here are some highlights from our conversation.
CY: Having coordinated a very intense two-year period of elder care with my two sisters, this book really hit a chord. I haven’t seen anything written on the subject of siblings sharing care of their aging family members. Why do you think that is, and what do you hope your book does?
FR: In the past, grandparents usually died quickly and didn’t live to be that old. They didn’t need help for 10 years. This is the first time in history that original family members have to engage intimately, perhaps for the first time in 40 years, over important issues that may go on for a decade.
People always had to go through the psychological passage of losing parents and facing their own mortality. But we never had to do it while gathering with original family members and negotiating how to coordinate care for so long.
The family has changed. You’re not the little sister. You’re not the big sister. Everyone is an adult, and it’s a challenge to adapt in this new period as adults especially in a crisis when we tend to revert back to old roles. We learned these roles as little kids. You may have to deal with favoritism, or that so-and-so is the “incompetent” one. All this needs to be reexamined as you are today.
Caring for your parents is a wake up call to become conscious. Be aware of your feelings as you navigate uncharted waters. You need to know that huge emotions can sweep you up, and you want to be prepared so you can react in ways that are productive.
CY: In the book you talk about the process of picking a primary caregiver. You point out that who that main person might be isn’t always obvious. Can you say more about the process? And how much of this conversation can take place between siblings before an elder care crisis hits?
FR: Caring for a parent is not a job for one person. It is a major family passage. And the conversation should take place if at all possible before a crisis happens. In a perfect scenario, the parent should be involved directly in that discussion. That’s not always possible because you might get, “Oh, I don’t want to talk about that. I’m going to die at 89 years old in my sleep.” Well, that rarely if ever happens.
My hope for the book is that the sibling who buys it and reads it first passes it along and initiates the dialogue. For example, it is often assumed that location determines who will provide care, but that is not the case. In addition to the responsibilities and location of individual siblings, you should consider who has the closest relationship with the parent or parents. In some instances, that will mean the parents will decide to relocate closer to the child with whom they have the strongest emotional bond. This is especially true if a parent is moving to assisted living or continuous care.
Yes, caring for a parent is a family job; however, it is helpful if one person, with everyone’s agreement, takes responsibility. But that doesn’t mean assigning jobs. Many of the complaints I’ve heard have to do with a caregiver feeling overburdened, or being highly controlling.
It is best if everyone is asked what they want to contribute, and what they are comfortable doing. This then becomes a regular assignment that’s part of schedules and lists outlining tasks and responsibilities.
The important thing is to maintain a sense that we are all in this together. It’s easy for caregivers to feel let down by their siblings. They expected help but didn’t say anything, and they feel rejected. The stress can tap into so many unhelpful, often counterproductive things we learn in families like, “I shouldn’t have to ask my brother.” It’s so wrong, but does a great deal of damage to a relationship. By the time the siblings finally begin to interact, there’s lots of anger.
CY: Disagreements between siblings about end of life treatment can be incredibly difficult. My sisters and I are very close, but toward the end of my mother’s life it was interesting to watch how we each dealt with what was a heart wrenching situation so differently. Why is it important for siblings to recognize the unique challenges of this particular time, and what can they do to avoid as much of the confusion as possible?
FR: You’re right. This is possibly the most difficult moment in life, and it will bring up equally difficult emotions. Some siblings will not want to let go and will want to keep Mom or Dad around no matter what.
Siblings need to have compassion for each other. All I can say is don’t wait to have this conversation! This book is a manual to help you prepare emotionally for the end-of-life reality now. A great way to do this is to initiate the conversation over the holidays when everyone is gathered. You could start by saying, “I heard this horrible story about a friend’s parent going into a coma having not discussed what they wanted their children to do. It was a mess. I hope that never happens to our family. (Mom/Dad), while we are in the same room, can you tell us what you would want us to do?”
When handled this way, siblings get beyond emotional distortions, needs, and competitions. There’s a much better chance you’ll all be on the same page when it happens. However, some siblings may still have trouble letting go. If you think it is going to be really difficult, make a trusted relative who is not a sibling the health care proxy.
CY: One of my favorite parts of the book talks about “Reinventing Your Family,” and establishing new rituals. This is so important and yet it’s not top of mind as you are knee deep in the care giving. Why is it important and what should sibling caregivers do to start that reinvention process?
FR: Many times original family rituals formed around the parents. Whether during an illness or after they die, new rituals need to take their place.
If siblings have started a dialogue around caregiving that’s reasonable and friendly, they can extend this. For example, commit to meet once a year at a particular time. There were sisters who hadn’t spoken in a year because they were very angry. As part of their negotiation to try to repair their relationship that had broken down over care giving, they agreed to meet once a year.
Another idea is to make phone calls or video conferences part of every holiday. Make it a ritual. Another story I heard that I like was of three sisters who didn’t live in the same city but agreed to all fly to Chicago, which is where there mother had lived, every year on her birthday for the weekend.
It’s about connecting but also being flexible because everyone has busy lives.
CY: Thank you, Francine. As someone who charted the elder care trenches with my sisters and made it out the other side, I wish we had had this book to guide us. Thank you for seeing an unmet need and providing such a comprehensive, helpful how-to.
Have you spoken with your siblings about how you plan to coordinate care for your parents? If you have, what was the experience like? If you haven’t, why not?
For more about They’re Your Parents Too! and Francine Russo, go to www.yourparentstoo.com, and @YourParentsToo on Twitter.
The one thing that we have seen many times with family and friends is that siblings getting together is not a team effort. Each individual is just that, an individual with his/her own ideas of what is required and how much effort she/he will be put into this. The only way to avoid strife is to never judge, allow each to do whatever they choose to do in providing care, and move on with what you have. Balance and sharing is highly unlikely and might not be a good goal. Lots of communications, caring and sharing, however, is a must!
Hi Jon,
So true, and why I find Francine’s book so helpful especially in circumstances where the care requirements may go on for more than a decade as in the case of Alzheimer’s. I find for too many people elder care isn’t even on the radar screen until crisis hits. There has to be much more advanced planning and conversation that happens long before a crisis hits and it becomes a stress-filled scramble for everyone. As Russo points out, we’ve never had to do that before so how would we know. Thanks for sharing your experience!