SPECIAL FROM Next Avenue
By Sue Campbell
My friend Mary’s mother died in July, and last week over dinner I asked her how she was doing. “I’m at peace with it,” she said. “But I’m afraid I’ve permanently damaged relationships with a couple of my siblings.”
In their mother’s final months, the five brothers and sisters fought over everything from how frequently out-of-town sibs should visit to how much morphine their mother should receive to which words they should use to tell their mom it was OK to let go.
“My one sister was horrified when she heard me tell my mom: ‘It’s OK to die now,'” Mary said. “She told me not to use the 'D-word,' ever.”
Bickering, negotiating and trying to reach consensus on decisions big and small was frustrating and exhausting for Mary and her whole family.
In an ideal world, siblings pull together to care for ill parents. But in real life, friction is common and can be made worse by a fine-tuned ability to push one another's buttons and replay old rivalries. Ironically, the parent everyone’s fighting about would probably hate to see his or her children arguing this way.
Joan Lunden Spells Out How It Should Be
The best way to prevent disputes over “what Mom would want” or “what Dad needs most” is to find out before a crisis what the parent's wishes are. Even before that, siblings should gather to talk about the realities their aging parents face and how they can contribute to help, according to Joan Lunden, former Good Morning America anchor and longtime caregiving advocate with A Place for Mom.
“I highly recommend that adult siblings, starting in their 40s, meet first without their parents,” to talk about “what ifs,” Lunden told me in a recent interview.
“You should go around the room and say what you are willing to do, how much money you would be willing to chip in for care and talk about what you’re best at,” she said. Understand that a division of labor will never be fair and equitable, and divvy up responsibilities based on capacity and ability.
“I have only two regrets in life,” Lunden said. “One of them is that I never did what I’m saying right now. Because I never did, I had to deal with all these decisions about where my mom would live and who would take care of her when I was in a moment of crisis.”
For Lunden, the crisis hit when her brother, who had lived with her mom, died of complications of Type 2 diabetes. “I didn’t have a plan in place, and that meant I walked a very tough road,” she said.
Her other regret, was not getting her mother into a senior living environment that would have provided stimulation and social activity sooner than she did.
Figuring Out Caregiving Roles
Eileen Michaels and her brother and sister also faced a crisis when their mom developed a pulmonary embolism and had to be suddenly hospitalized at 85.
“We all tag-teamed that,” said Michaels, who formed the company Easier Living, which offers products caregivers need, based on her experience with her mom. “But we could see in the midst of that hospital stay that there were problems with us duplicating efforts and contradicting each other. We realized really fast that we had to get organized.”
Michaels took on all things medical, and her brother — a businessman with an engineering background — set up automated bill-paying and document organization. Their sister, the only one with children, made sure to bring the grandkids by regularly to cheer up their mom.
“Once we got away from the initial crisis, we saw how important it is to really define roles and figure out who’s doing what,” Michaels said. “We are all independent and used to doing what we do — and we all think everyone would do the same things we would. It is shocking how untrue that is.”
Michaels and her siblings had some “emotionally charged” situations, with one “not believing you would say that, or make that decision,” she said — the natural outcome of seeing things differently.
They got through negative feelings and assumptions by setting up rules. The main one: whoever’s on the ground gets to make the decision, and the others can’t second-guess it. It surprised them all hard that rule was to live by.
“This experience reminds you — it’s a long way off I hope — but someday, that’s you,” Michaels said. “You’ll be the one needing care,” and needing your kids to pull together on your behalf.
And Michaels is happy to report that she, her siblings and all the spouses and children took a cruise after four years spent sharing caregiving responsibilities — the first time they’d been on vacation together in 20 years. Their mom, now 89, considered going, but decided not to.
The trip was a sign that they’d worked out any hard feelings and were ready to relax and enjoy each other’s company.
Nothing, Michaels said, could have made their mom happier.
6 Tips For Siblings Managing A Parent’s Care
1. Talk, talk, talk. Before a crisis, talk in a positive way with your parents. “Say, ‘What’s on your bucket list? How do you want to live the coming chapters of your life?’” Lunden advises. “Talk about finances, so you and they understand real costs. These costs can bring down a whole family financially.” Make sure to talk with siblings, too, so everyone knows the same information and can define what the roles and rules will be.
2. Gather information and papers. “Know where all the money and accounts are, the insurance, the name of the investment broker, title to the cars, safety deposit box and keys, passwords, all of it,” Lunden says. “Ask if you need to have your name on their accounts, who their doctors are, if they have an advance health care directive — everything.”
3. Share documents on the Dropbox file-sharing service. Michaels was in Boston, her sister in New York, her brother in San Francisco and her mom in Pittsburgh. A service like Dropbox helps everyone get, literally, on the same page.
4. See your parent daily. Whether you do this through Skype, FaceTime or some other method, get the technology set up and make sure your parent knows how to use it. Michaels learned the hard way how important it is to have visual cues. Her mother was targeted by “roofers” who bullied her and took her to the bank every day to cash checks for them. The stress of the two-week ordeal caused her to lose both weight and sleep. “If we could have seen her, we would have guessed something was wrong sooner,” Michaels says. They bought their mom an iPhone and now “she FaceTimes us all the time,” Michaels says.
5. Accommodate as much as you can. Terry DiDona and her sister, of Cleveland, Ohio, have three brothers, yet the two women are their dad’s primary caregivers. He goes to adult day care at Benjamin Rose Institute, but they cannot afford home health care nursing every day, so the sisters split the job, alternating weekend shifts, scheduling day care drop-offs timed to their work start times and taking turns staying overnight at their father’s house. They don’t argue because they each understand what a tough job it is. And they try to always help one another get a respite. For instance, DiDona says, since her sister loves a particular exercise class, “I always stay with my dad those nights so she can go.”
6. Realize you’re not alone. DiDona and her sister also rely on one another for support. “I will send her an article about other people in situations like ours,” DiDona says. “We will talk about how tired we get and how frustrating it can be. We do get worn out, but there’s no other choice, because we don’t want to put my dad somewhere. So together, we just keep going."
Read more from Next Avenue:
10 great Frances McDormand quotes on aging
The truth about hair loss and baldness cures
Finding affordable home care for your parents