A year and a half ago, Amy Florian's 85-year-old father's kidneys were failing.
"He always said, because he watched his brother go through dialysis, that he did not want to go live on dialysis," Florian says. "When it actually came down to it, he was lucid enough to make the decision himself and he decided to try dialysis at least for short term, and see what happens."
One day in July, Florian's father laid back with his eyes closed and said, "Do I have to keep doing this? Do I have to keep fighting?"
Florian says she told him, "No. You don't have to."
He ended dialysis and died 10 days later on Aug. 5.
Florian, who lives in Hoffman Estates, Ill., and is an author and expert counselor in the grieving process, says her father is an example of someone who was able to make his own decisions about his health and finances up to the end of his life. But if he hadn't been able to make those decisions, he still would have had his wishes followed.
"Even if he was no longer able to make that decision about dialysis for himself, we would have been able to do it for him because we know what he wanted," she says.
Many Americans, however, are not having similar conversations with their families. Parents are not discussing their wishes with their adult children. A survey by the National Endowment for Financial Education, a non-profit institute based in Denver that promotes financial education, found that while 86 percent of those surveyed say they would trust a family member to make financial decisions for them if they couldn't, 69 percent of people said there are "major barriers" in the family to discussing the possibility. With Baby Boomers heading into their senior years, the problem is growing and may leave families struggling to follow the wishes of their parents regarding finances and health.
Barriers and family dynamics
Paul Golden, spokesman for the National Endowment for Financial Education, says conversations about aging and current or possible future cognitive or physical decline can be very difficult to have. "There can be pride, denial and defensiveness," he says. "Seniors may be tested for driving, but there are no tests to measure financial acuity. That falls on families to be responsible."
Edward R. Collins, a wealth advisor and financial planner at Artisan Wealth Management in Lebanon, N.J., says adult children can go too far. "They take too much action," he says. "They try to seize the checkbook and order their mom and dad. I don't like people telling me what to do, and parents don't either."
Instead, Collins says, the attitude has to be one of helping and leaving the parents in control of their own lives.
But people should be aware of warning signs that something may be wrong — such as bills being scattered throughout the house or utilities being shut off for lack of payment.
Burdens and control
"There are a lot of psychological issues related to money matters," Collins says. "One is being independent. The other is a desire to not be a burden on your children. A parent doesn't want to be a burden. They feel guilty about that, so they may keep a lot of things secret, keep it internal. That way they don't put it on their children."
Gerald W. Kaufman and his wife, L. Marlene Kaufman, have more than 50 years of experience in family therapy between them and have seen the problems of talking about cognitive decline in their practices in Akron, Pa. Instead of losing control to overbearing children, Marlene Kaufman says, a discussion with adult children establishes control.
"Talking about their wishes can diminish conflict among their children and gives parents peace of mind," she says. "They can enter into the last stages of their lives without having to worry that they won't have a say in what is happening. Talking about what they want to happen really helps them maintain more control of what their wishes would be."
The Kaufmans, who are in their 70s, had a discussion with their four adult children last year. As the authors of a book on the subject, "Necessary Conversations: Between adult children and their aging parents," it wasn't a surprise to the siblings.
"We told them what we are thinking," Marlene Kaufman says. "It was just ideas; nothing was set in stone."
They talked about funeral plans. They asked which children might be interested in acting as a medical proxy or perhaps an executor and so forth.
"They looked around at each other and paused a bit," Marlene Kaufman says. "But then they came forth with their thoughts. It really was a freeing time for them and for us."
The Kaufmans recommend starting the discussion when people first retire. This is also a time when the adult children have reached the age of about 40 years old.
"Most adults around the age of 40 have enough maturity to think these things through," Gerald Kaufman says.
"If someone is in their 80s and hasn't had these conversations," Marlene Kaufman says, "the time to have them is now. The older we get, the more important it is to get the children involved."
What to discuss
Golden with the NEFE says conversations about the practical realities of aging are a great time to take a full inventory of a person's financial life. Medical history and medicine schedules are important as well — especially if the conversation grows out of overt signs of cognitive decline due to aging, sickness or depression.
"The important thing to remember for the children is that this is their parents' plan," Golden says.
Golden says it is a good idea to divide potential and real responsibilities among siblings if possible so that everybody can feel involved.
If the conversation begins early enough, plans might include setting up trust funds — which could protect the wishes of parents, Collins says. He also warns of some states that have "filial responsibility laws" in place, which may make adult children responsible for the expenses of their indigent parents — another reason, perhaps, to be aware of what is going on with aging parents.
Not just for the aging
Florian, who created the company Corgenius to train companies about helping clients in times of "grief, loss and transition," agrees that having a family discussion about losing mental capacity or declining health is important. However, Florian doesn't think it is a good idea to make it a discussion about aging. Instead, she suggests making the preparation process a family project. For her it isn't about Mom and Dad getting old, it is about the possibility that anybody could benefit from these conversations.
Florian suggests a conversation along these lines: "'You know, we aren't in control as much as we would like to think we are. Anybody in our family could have something happen where one of the rest of us needs to make either healthcare decisions for them or financial decisions for them. And you know that is kind of scary because it could happen to any of us at any time."
"Why don't we, as a family, decide that we are going to protect each other. We are going to make it easy for each other. We are going to talk about what treatments we would want or what treatments we wouldn't want in certain circumstances. We are going to decide who is the primary decision maker for each one of us. It can be different for everybody. Then other people in the family can protect us, can do it for us, because they'll know what we want."
The Kaufmans, who are Mennonites, say such conversations can also have a spiritual dimension to them.
"We do believe faith can have a powerful effect on the discussion," Gerald Kaufman says. "We also recommend that we engage pastors, deacons and shepherds from church to help move along this process — especially if the seniors have no children they may, at their church, find substitutes for adult children and make decisions and guide them through the senior stages."
Florian has personally seen the advantages of having discussions with family. It helped her with her father. She has seen where it helped relieve spouses and children of the guilt of having to make decisions without knowing the wishes of their loved ones. She has seen it when living wills and other documents — both legally binding ones created with an attorney and other documents that clarified preferences — have helped families in difficult times.
"Can you take this burden off them?" Florian says. "Can you protect them? Can you make it easier for them? It's not about you; it's about the people that you love and who love you."
Copyright 2016, Deseret News Publishing Company