by Jane Heller
Jane: Why do young, healthy people need any of these documents?
Karen: Unless you have a crystal ball, you don’t know when you’re going to have an accident or an illness. There’s precious little we can control in our lives, but we can have some clarity about what our desires are if something catastrophic does happen. The Terri Schiavo case had people just about standing in line outside my door to get advance directives drafted because that’s everybody’s worst fear—that there could be a fight over what your wishes really are. The other point is that we don’t live in communities with all of our family members. We often don’t have close connections with our family. We may only have friends and they’re totally useless in terms of trying to help under these circumstances unless they have power of attorney. You can live with somebody for twenty years and you won’t have a say in anything unless you’re either married or have the advance directive.
Jane: How legally binding are these documents?
Karen: A document is only good if people pay attention to it. If they don’t pay attention to it, the only value of the document is that you could conceivably go to court to try to enforce it—or, conversely, to contest it.
Jane: Most hospitals hand out advance directives, and people can download them online. So why should we pay a lawyer to draft them?
Karen: One advantage is that an attorney can discuss how the documents work and under what circumstances they’re valid—like if you’re traveling.
Jane: Are they valid if you’re away from home?
Karen: There’s no guarantee they’re going to be recognized internationally, but if you’re traveling here in the U.S., most states will honor them; it depends on the state. In any case, you should keep a copy of the document with you when you travel or carry a card in your wallet that says you have the document.
Jane: I would think people would also use an attorney to have help making the decisions in the documents.
Karen: I think that’s one of the biggest reasons. Using an attorney is an opportunity to talk things over with somebody so you’re clear about what your decision-making is.
Jane: How do you broach the subject with clients? It’s pretty touchy, isn’t it?
Karen: Chances are by the time somebody has hit their eighties or nineties, they’ve bumped up against something in the medical establishment, even if it’s only trips to the doctor. Or they know somebody who has had something catastrophic. I often use that as the way in. I say, “Look, I know nobody wants to talk about this kind of stuff, but wouldn’t it be helpful for everybody to be clear about what your wishes are just in case there’s some reason you can’t express them?”
Jane: What’s your advice for caregivers when it comes to nudging our loved ones to get these documents drawn up?
Karen: If you can get them done when everybody is healthy, it’s far better than if you’re facing a crisis. We all know that our thought processes are a tad impaired under those circumstances.
Jane: Right, but then what? What should the role of caregiver be if we’re given power of attorney?
Karen: Your duty is to best approximate your loved one’s wishes, whatever they are. And if they’re counter to your personal wishes, so be it. If you’re appointed under the power of attorney, you’re merely being the voice for the person who doesn’t have a voice. You are not making the decision. You are not supplanting your will for their will. My advice to the caregiver is to do the best you can do. At the end of the day, if the doctors listen to you or don’t listen to you, you’ve done the best you can do by the person. You’ve honored his or her wishes. You can’t give a greater gift to anybody than that.
CHAPTER 10
Getting on the Same Page as that Sister Who Drives You Nuts (and Other Family Matters)
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“In the best of circumstances a sibling should be able to say, ‘Look, I’ve always resented you, but let’s figure out how we can divide up this labor.’ If that’s not possible, it’s a good idea to get a psychologist or a mediator and really figure out what everyone’s role is.”
—MICHAEL SEABAUGH, clinical psychologist
Michael hates calling people. It’s a quirk, an eccentricity. It’s as if he’s convinced the phone will ignite and set his hair on fire if he picks it up and dials someone’s number, which is why I’m the one who makes the dinner reservations, invites people over, and checks with the gas company to see why the rates went up.
When it comes to calling his sister and two brothers, he’s truly pathetic. They’re scattered around the country and they don’t exactly call him on a regular basis either, but still, it’s weird. If he thinks of it, he’ll call to wish them a happy birthday, but he never reaches out to them when he’s in the throes of a Crohn’s flare-up and could really use their support, the consequence being that they’re totally unaware of how bad things get around here. It’s not that he doesn’t love his sibs; he just comes from a family that doesn’t blab to each other about everything and certainly not about anything the least bit unpleasant. As a result, he could be in the hospital, writhing in pain, a tube down his stomach, oxygen up his nose, and yet his phone conversations with them would go like this.
Michael: “How you doing?”
Sibling: “Great. You?”
Michael: “Great. How’s the weather?”
Get the picture? Part of the problem is that Michael views himself as the big brother and doesn’t want to ask for help, drag anyone down, be “a bother.”
“They’ve been watching me be sick all their lives,” he explained. “Telling them I’m in pain or in the hospital is basically like crying wolf at this point. They’ve heard it all before.”
“So?” I protested, always lobbying for full disclosure. “Let them hear it again.”
All this benign neglect would be none of my business except that I’m Michael’s caregiver; even if he doesn’t want their support, I could use it from time to time.
I remember when he was in a New York hospital before we were married. He didn’t have health insurance then and the uncertainty over how he would be able to pay for his weeklong stay was only adding to our stress.
“Don’t you want me to call your family and tell them what’s going on?” I asked.
“No,” he said. “I don’t want to bother them.”
The usual.
I was tired from the commuting back and forth to the hospital, tired from worrying, tired from doing all the heavy lifting.
“Call your siblings,” I said during one visit. “Maybe one of them will fly in and spend time with you.”
“No,” he said.
I tried again the next day—and the day after that. Finally, he agreed to call the sibs. He told them he was in the hospital and from his description you would have thought he was partying in Vegas.
I decided to butt in and stop the madness. I called them myself and said, “Look, your brother is in the hospital, and it’s not because he has a hangnail. He’s really sick and I think you should know.”
My intervention worked. Suddenly, everybody was calling him and expressing concern. Best of all, his brother Mark spent hours researching the insurance situation and discovered that the hospital had a grant for artists and photographers that was designed to cover all their medical bills. Talk about a miracle—something we would never have known about if not for Mark, to whom we are forever grateful.
The moral of that story is that family members aren’t aware that there’s a problem unless you spell it out for them. How can they help if they don’t know what’s going on? When it comes to my ninety-five-year-old mother, who lives in suburban New York and is experiencing increasing memory loss, I’m very lucky. My sister, Susan, is nearby in Manhattan, while I’m 3,000 miles away in California. She and I are seven years apart in age, but we get along well. We communicate. We’re on the same team. We have each other’s backs.
While she’s been very hands-on, given her proximity to our mother, and is the daughter who’s bee
n designated to make medical decisions for Mom if necessary, she doesn’t hesitate to include me in decision-making. I never detect even the slightest hint of resentment that I’m not there full time; she seems genuinely happy to see me when I visit. She knows that I’d be on the first plane out if she asked me to be.
I have friends who aren’t so fortunate when it comes to which of them is the boss. Sibling rivalries tend to surface when a parent is ill and the competition for Mommy or Daddy’s love kicks in all over again. What’s more, reasonable people can and do disagree, which is why it’s essential that everybody knows which of you is in charge of an elderly parent, grandparent, aunt, or uncle should he or she not be able to function. Who decides what? Who pays for what? Who sits and holds Mom’s hand?
Living wills and durable power of attorney documents will make clear which of you has the legal right to oversee your loved one’s medical matters, but they don’t compel anybody to share costs with you or indicate how long such payments should last.
My friend Deborah Hutchison came up with an ingenious adjunct to advance directives. Collaborating with Judge Lynn Toler from the TV show Divorce Court, she wrote a book called Put It in Writing: Creating Agreements Between Family and Friends, in which there is an agreement that specifically addresses the issues pertinent to those caring for an aging parent. The book is part of a series Deborah has termed “A Sane Approach to an Emotional Issue.” I asked her to elaborate.
Jane: There’s a sane approach to being a caregiver? Who knew?
Deborah: That’s the purpose of the agreements: to find the sane approaches.
Jane: I’m guessing your own experiences as a caregiver led to the aging-parent agreement.
Deborah: Right. My mother, who had been living on her own, was diagnosed with Alzheimer’s and needed to live with me. I’m the oldest child in a family of three siblings and now I had the responsibility of caring for Mom. I said, “Okay, I can’t take care of Mom all by myself. I have a sister and brother. How might I split up the responsibilities? How might I have the kind of guidelines that were so helpful in the other agreements in the book? How do we as a family come together and help one another? And let’s do it before Mom is in such bad shape and I am so exhausted that those old family dynamics start to come up.”
Jane: The agreement has all sorts of contingencies and charts. How did you figure out what to put in it?
Deborah: I just talked to people about the different possibilities. For example, maybe Mom and Dad are okay and just need to be looked in on. Maybe they need a little help with groceries and things like that. I offer suggestions about how the siblings can split up the responsibilities.
Then you have parents at the next stage where they can’t drive, can’t handle their finances, can’t see, and can’t remember to take their medication. If they’re not going into a community and they need help, it’s time to sit down with your siblings or get on the phone with them, take a look at the agreement, and make decisions about who will do what.
If you have someone in the family who’s astute with finances, give them the financial responsibilities. If you have someone who’s more astute with the medical matters, give them the medical responsibilities. If you have someone who is better able to look in and drive them around, give them those responsibilities. The point is that it’s a very, very tough thing if one person tries to do it all.
Jane: How did you and your siblings divvy up the responsibilities?
Deborah: My sister is a trained nurse, so she has the medical knowledge, and I’m taking care of Mom’s overhead. My brother decided to contribute money. And when he can, he’ll come out and stay with Mom so my sister and I can have respite and take time away.
Jane: How do you know everyone will live up to what they said they’d do?
Deborah: You don’t. But once you sign the agreement you’re promising to do something, which is a gentle way of making a commitment. Nothing is set in stone. But if you sit down and you make the promise, it’s a nice way of coming together and saying, “We’ve got to do this.”
Jane: Is the agreement legally binding?
Deborah: No. That’s not what this is about. It’s more about setting guidelines, communicating, participating.
Jane: What if the siblings are estranged?
Deborah: This is not for a completely dysfunctional family, although you can still invite an estranged sister to sign the agreement. If she chooses not to do it, she chooses not to do it. And even if she does choose not to do it, it might bring up things she wouldn’t have thought about and she might just take a moment to call her mother or volunteer to help.
Jane: How should people broach the subject with their siblings?
Deborah: I recommend that you download the agreement and send it to everybody in the family so you’ve all read it before discussing it. We have a cover letter that comes with it. It says, “I’d like to invite you into this agreement.” And I love the promise, which says, “Let’s be prepared to help our parents as they age by working together towards his or her well being and supporting one another in that effort.” That’s really what it’s about: how do we help our parents and support each other—and stay sane during a very emotional time.
For anyone who would like to download Deborah’s agreement, visit her website at www.saneapproach.com, go to “Agreements,” and click on “The Caring for Our Aging Parents Agreement/Emotional Contract.”
Have any of the caregivers in our support group had issues with a sibling over the care of a loved one? Take a look.
Barbara Blank: “I’m my father’s primary caregiver because I’m the only one here in Florida with him; my siblings are in other states. There’s usually one person in the family that has the wherewithal and the strength to do the caregiving, and it seems to be me in this family. But it was always like that. I’m very nurturing and domestic, and I can multitask. My other siblings are caring—it’s not that they’re not nice—but they just kind of stand on the sidelines and go, ‘Oh, isn’t that wonderful. Look what she can do.’ Do I resent it? Yes. I think it’s insane that they don’t step up to the plate. Who needs to be asked to help a parent? And if you have to ask, what good is it? I don’t ask. I just do it. I do have to say that one of my brothers is a physician and he makes the medical decisions for my father. And although my sister’s nickname was ‘Queenie’ growing up and she’s lived up to her name really well, she did step up to the plate when my mom was really sick in California. So maybe it evens out.”
Cecilia Johnston: “I have a difficult brother, but I’ve learned to massage him. If there’s any little thing going on, I’ll call him and say, ‘What do you think about this?’ And he’ll tell me and I’ll say, ‘Yes, of course,’ and then I don’t listen. It makes him feel like the big man that I asked his opinion, and I go ahead and do what I think is best. But I do use my brothers to help. When my dad was still driving and shouldn’t have been, one of my brothers was flying in to visit. I said, ‘You’re going to be the one that tells him not to drive because you get to go home.’ So I’ve used my brothers to do my dirty work, which turns out great. It’s a good tip for caregivers: use your siblings.”
April Rudin: “My sister and I are complete opposites. In terms of making decisions about our grandmother, I would say, ‘Let’s take her out shopping,’ and she would say, ‘Let’s stay here and stare at her in her chair.’ One time, after a visit with our grandmother, we were stressed about what was going on. We got on this little commuter flight to go home, had a fight, and just stopped talking to each other. But we loved our grandmother very much and always came together for her. Since my sister was an attorney and I was married to a doctor, she handled all the legal aspects, like drafting the living will, and it was my responsibility to interface with the doctors. She also contributed quite a bit financially. She and her husband stepped right up to the plate. We didn’t have a formal agreement about money; it was just generosity on her part.”
Psychotherapist Tina B. Tessina
has had plenty of experience counseling siblings around this issue:
“The best thing siblings can do, even if they don’t get along, is to let each one do what they do best,” she said, echoing what Deborah and others have said. “If somebody is really good with the finances, that person should handle the elderly parent’s finances. Maybe someone else can handle the physical care of the parent or, if not, maybe they have a good job and can contribute money toward hiring a professional caregiver. There are going to be siblings that just can’t deal with hospitals or nursing homes and you have to accept that. There are going to be siblings that live across the country and you can’t force them to do otherwise. Just try to divide up the responsibilities and find a way to let the rest be okay.”
And if you can’t divide up the responsibilities either because everybody’s in a state of anxiety or because you have a sister who doesn’t speak to you, take the advice from clinical psychologist Michael Seabaugh: “Get a psychologist or a mediator.”
CHAPTER 11
Who Knew Friends Could Be So . . . Unfriendly?
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“I often think that the reason many friends stay away is because they’re afraid this could be their life. You find out who your true friends are.”
—SUZANNE MINTZ, cofounder, National Family Caregivers Association
“Michael, you got so fat!”
I nearly did a spit take of my white wine when a man Michael and I hadn’t seen in a few months blurted out that little gem. I mean what kind of a jerk calls you “fat” right to your face? I kind of choked when he said that, and the wine went up my nose.
We were at a cocktail wedding reception on a sunny Saturday afternoon in Santa Barbara. Michael was going into the hospital for yet another surgery that Monday; he had a partial obstruction and needed a resection. He was on a high dose of prednisone and his face and neck were bloated, but he had pulled himself together so I wouldn’t have to go to the party alone.