Taking care of aging parents, from a distance

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    Patrick Quirke, in his home office, displays pictures of his parents who passed away several years ago. Patrick cared for his parents before they passed away.

    - Vanessa Vick for The New York Times

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    Burke, VA – November 14, 2013: Portrait of Patrick Quirke in his home office where he displays pictures of his parents who passed away several years ago. Patrick cared for his parents before they passed away. 

    - Vanessa Vick for The New York Times

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    Patrick Quirke displays pictures of his parents who passed away several years ago. Patrick cared for his parents before they passed away.

    - Vanessa Vick for The New York Times

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    Patrick Quirke displays pictures of his parents who passed away several years ago. Patrick cared for his parents before they passed away.

    - Vanessa Vick for The New York Times

This story appears in The New York Times 'Your Money' section on Wednesday, Nov. 20, 2013.

Through the 1990s, Patrick Quirke’s career was sailing along. Every few years, he would be promoted at the transportation company where he worked and move to another city. He said he had every reason to believe that he would be promoted to the company’s headquarters in a few more moves. Then, his parents’ health started to decline.

First he moved them to Indiana, where he was living, from California, where they had retired to help his sister, who had been injured in an accident. He said they did well in the independent-living facility he found, but then his mother’s dementia grew worse and his father started to decline physically.

By then he had been promoted to a position in Washington, and he moved them to a facility near his home. In 2001, he said, his mother’s Alzheimer’s worsened and she had to be put into a special care unit, leaving his father alone. The costs mounted -- to $8,000 a month from $3,500  -- and so, too, did the demands on his time.

“When my dad would fall or my mom would fall, I had to leave work,” Mr. Quirke, 58, said. “I remember being in a pretty big meeting in Las Vegas. I got a call within the first two hours and I had to fly back. There was no choice. I had to take care of them.”

Washington would be his last promotion with that company. “After 25 years of being at the top of my game, it ended here for me,” he said. “I’m not going to say it was because of my parents. But I didn’t have the focus I had earlier on with the company.”

He left the job in 2004, and tried to start his own business. Since 2006, he has worked for the Department of Labor, and says he likes spending his time helping people.

Caring for aging parents at a distance is a great challenge for grown children. And stories like Mr. Quirke’s are common. Besides the physical and emotional strains, there are also financial effects beyond the extra expense, like Mr. Quirke’s lost job mobility.

Katy Butler, author of “Knocking on Heaven’s Door: The Path to a Better Way of Death,” an account of  her eight years caring for her father and mother, regularly traveled from her home in Mill Valley, Calif., to be with them in Connecticut near Wesleyan University, where her father had taught history.

While she visited two to four times a year (for several years, they helped pay her travel costs), she said she also worked from home to help them, pursuing her freelance science writing. At that distance, she struggled to find caregivers for her father after he had a severe stroke and then dementia, and later for her mother, who resisted any help at first. She said she wished that instead of trying to do everything herself, she had enlisted family members to do more.

Another regret: “I ended up managing their money,” Ms. Butler said. “That was absolutely foolish. If I had it to do over again, I would have hired somebody that was competent to manage their money, whom I was comfortable with and vice versa  -- and was local to me, not local to my parents.”

But above all, she wished she had had a better perspective on what was happening. “You’re not going to be a perfect caregiver,” Ms. Butler said. “Not everybody’s going to be happy. Not all your decisions are going to be good. All you’re going to do is try to do good enough and try not to be absolutely exhausted.”

Getting control over a parent’s money to pay bills and monitor spending might seem like an easy way to help out from a distance. But it may prove to be as delicate a subject as convincing parents that they need to move out of their house or give up driving.

“There are rules about what we can and cannot tell the children,” said Robert Fross, a partner at Fross & Fross Wealth Management at The Villages,a retirement community in Central Florida.

Mr. Fross says he tries to encourage adult children to meet with him when they visit their parents, particularly if they live far away. He recalled a time when he grew concerned about a woman who was making large and frequent withdrawals from her account without telling him why she needed the money.

“It got to a point where we reached out to her son,” Mr. Fross said. “He jumped on a plane and found out she had given away over $100,000 to a Nigerian scam.”

That was a situation, though, where he was not authorized to talk about the woman’s accounts with  her son, so he had to persuade him to come help her without telling him how much money was gone.

The lesson? “If you don’t have an open dialogue with your parents, there aren’t going to be any red flags,” Mr. Fross  said. “If you do have an open dialogue, children need to watch basic account valuations.”

Yet this is an area where it is easy to give advice about what people should do but  more difficult for those who give the advice to follow it when their own parents fall ill.

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Lou-Ellen Barkan, president and chief executive of the Alzheimer’s Association’s New York City chapter since 2004, said she cared for her father, who was in declining health, from 1987 until he died in 2001 -- exhausting her parents’ savings during that time -- and then for her mother, who had a stroke and dementia when she died in 2011.

If at all possible, Ms. Barkan said, move sick parents closer to the children who are caring for them. It not only saves on travel costs -- she said she flew to West Palm Beach from New York every other month for over 20 years -- but also gives  aging parents someone who can be there to talk to doctors or be an advocate for them in a nursing home.

This, however, was something Mr. Barkan was only able to put into practice in the last 18 months of her mother’s life.

Still, she said, it helped her and her husband make their own plans for a time when they might have a protracted illness. They have advanced directives and health care proxies in place, as well as a document expressing their wishes on more mundane issues, like what music to play in their room if they are unable to speak anymore. They have also done one thing many baby boomers may wish their parents had done: absolved their children of guilt.

“We have not ever said the one thing you must never say to your children, and that is, ‘Don’t put me in a nursing home,’” Ms. Barkan said. “We’ve had people whose parents have said that, and it’s such a terrible feeling when you promised your mother that, when you have to do it.”

Such guilt can haunt children long after their parents have died. Mr. Quirke, whose career stalled while he was caring for his parents, said he wondered how else he could have helped them. 

“For the most part, I feel pretty good about what I did,” he said. “The outcome is obviously you get to a certain age and you pass away. Emotionally, though, I get confused sometimes and wonder if I could have done a bit more for them.”

I’m Lou-Elllen Barkan and I’m the president and CEO of the Alzheimer’s Association, New York City chapter.

The most interesting thing that’s happened to me in the course of a fairly long career in three different industries really, is that the last few years when I became my own client.  And I thought sitting here at the Alzheimer’s Association as the CEO that I should surely be able to handle my own situation and I was shocked, really shocked to find out how vulnerable I was. And much of that was really associated with that fact that my mother and father had lived in Florida for many years. They had really made a life for themselves there. So it became imperative for me to travel back and forth to Florida to help my mom take care of my father originally when his Alzheimer’s became a big issue. And later on, when she became ill and had a stroke, I had to run back and forth to take care of her. It was extremely difficult.

I’m 68 years old now. The year that this really started was around 1987. That year my father had some surgery. And he was under the anesthetic for a fairly long time. And in the recovery period we all noticed his memory was really, very much impaired and he seemed kind of spacey to all of us.

He died in November 2001, shortly after 9/11 in what was really surely one of the saddest months or years of my life.

My mom in that period spent all of their resources caring for him, and so my brother and I decided that we would share the expense for caring for my mother, but she didn’t want to come back to New York.

My parents’ finances were very old fashioned. Meaning that I don’t think my mother or father ever expected to live as long or need the kind of money they needed.

What I’ve done for my children is be very clear about what our wishes are. And the other thing we’ve done is we have not ever said to them the one thing you must never say to your children,  which is you may never put me in a nursing home. We have families who say that and the children feel immense guilt because they can’t possibly take care of their parents on their own.

I’m not sure what money’s for, really. I used to say all the time when I was younger, life is for living and money is for spending, when you’re dead you won’t have bills. And there’s a real truth to that - unless you’re sick. And the problem is that as we all live longer, the thing that my husband and I fear the most is not dying. The fear is that we’re going to get sick and need somebody to take care of us. And having seen what that can do to somebody. That’s really scary.


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