|Written by MARY JACOBS|
|Monday, 14 May 2012 21:00|
Theoretically, Carolyn Dennis was an expert. She’d spent a year in a hospital chaplaincy as part of her graduate training, helping families deal with illness and death.
But when it came time to help her own aging parents cope with their increasing disabilities, Carolyn couldn’t convince them to think ahead or make needed decisions. She felt utterly helpless.
“It was a nightmare,” she said.
Similarly, Ross Forney’s family was blessed with many resources to cope with his diagnosis of Alzheimer’s disease. Wife Joyce is active, healthy and articulate; their grown children are engaged, loving and all dedicated to doing what’s best for dad. But when the time came to make some decisions about whether they should relocate to another state, according to Joyce, discussions got a little tense.
“We had a big fight,” is how daughter Kathryn Sargent puts it.
As families figure out the best arrangements for aging parents, conflicts can arise, even when everyone involved has the best of intentions, says the Rev. Wendy Fenn, chaplain and director of spiritual care at Faith Presbyterian Hospice.
“It’s a difficult conversation, especially when it involves family members who may be giving up all or some of their independence,” she said.
Elderly parents may feel as if their grown children are attempting to run their lives and tell them what to do. Siblings may disagree about whether it’s time to intervene or just take a “wait and see” approach. Siblings who are close to home may resent those who live far away and yet have strong opinions.
And many parents as well as grown children would just as soon deny the fact of illness, disability or impending death entirely. Add feelings of sadness, grief and worries over whether everyone has done all they can, and soon family members get defensive. Emotions can take over, and people start talking “at” each other rather than with each other.
Now a resident of Grace Presbyterian Village, Carolyn Dennis was so discouraged by the “nightmare” with her parents that she later co-authored a book, “When Mom and Dad Grow Old: Step-by-Step Planning for Families and Caregivers” (Brown Books), in hopes of helping others.
Her family’s problems boiled down to one thing: a lack of communication. Carolyn lived 1,500 miles from her parents. When she did visit, it was normally for a short time. At first, things seemed under control. “My parents would tell me that everything was fine,” she said. “However, the neighbors knew exactly what was going on but wouldn’t tell me about it.”
What was going on: Her father continued to drive, even though he was legally blind; her mother suffered from congestive heart failure and was hospitalized periodically, without informing her daughter.
When Carolyn found out and tried to initiate conversations about the situation, “Daddy would stomp out of the room. Mother would say, ‘Whatever your father decides.’”
Carolyn’s advice: communicate early and often. Initiate the conversation about care and end of life as early as possible.
“My parents were healthy and active throughout their 70s,” she said. “We got lulled into a false sense of security.”
When it comes time to initiate a “crucial conversation” in your family — expect to invest some time and effort into the process. Consider these tips for handling the conversation as productively and compassionately as possible:
Think through your own feelings first. “The best thing you can do is to get in touch with how you feel about the situation,” Wendy said. “Do your emotional homework first.”
TThis is a key step for any discussion, in business or personal life, according to “Crucial Conversations: Tools for Talking when the Stakes are High” (McGraw-Hill).
“Take a long hard look at yourself,” say the authors, Kerry Patterson, Joseph Grenny, Ron McMillan and Al Switzler. “If you can’t get yourself right, you’ll have a hard time getting dialogue right.” When family members neglect this step, they’re more likely to resort to debate, silent treatment or manipulation.
Doing your emotional homework untangles guilt, regret or old baggage that muddies your thinking, clearing the way to uncover the “mutual purpose” that family members share — what’s best for the family member. That’s communication at its best.
“The object of talking is not to impose a “right choice” on others,” writes Nancy Carson in “Conversations before the Crisis,” a publication of the National Hospice and Palliative Care Organization. “It is to learn what each member of the family thinks about the choices, and why.”
Gather information. The better your information, the better decision you can make.
Don’t rely on assumptions or old impressions. If you hated the nursing home where your grandmother stayed 20 years ago, remember that care facilities for elderly or aging people have changed dramatically. Visit and ask questions.
If you live far away from an aging parent, Carolyn Dennis advises, visit for more than just a few days. Observe how the older person copes. See if you can find people “on the ground” that you can turn to for additional information.
That was helpful for Kathryn Sargent when her family debated what would be the best care situation for her father. Friends of her father’s wife, Joyce, would take Kathryn aside from time to time, saying, “We’re worried about Joyce.”
“It was nice to have that community input,” Kathryn said.
Listen with your heart and your head. Getting to the underlying issue is essential. A parent who resists help from a home care worker may simply want more independence — or might fear that other family members will visit less often. A grown child who seems too bossy and eager to “take over” may simply be trying to do what’s best.
Call on a neutral party. Involve a professional who doesn’t have any family baggage — a doctor, a nurse or social worker — to negotiate disagreements or help an unwilling family member face difficult facts.
Wendy remembers a time when she and her siblings tried to convince her father to stop driving, to no avail. Then the doctor informed dad that his memory lapses meant it was time to hang up his car keys. He complied, with no argument.
Avoid a “take no prisoners” approach. Don’t automatically try to “fix” an elderly relative just because you think you know what’s best. Don’t assume you’ll hammer out every issue in one sitting. Take it slow, and stay sensitive and realistic about the person’s needs and wants. Allow people time to come to terms with unhappy realities. Expect some issues to take multiple conversations to resolve.
Remember, too, that generational differences exist. Members of the “greatest generation” tend to be very self-reliant, have a strong sense of privacy and do not like to ask for help, Carolyn said. Those differences need to be respected.
Having learned from the challenges that Carolyn’s parents faced, she and Bob chose to move to Grace while she was in her 60s and Bob was 71. They immediately became essential members in a very active community and consider it one of the best decisions of their lives.
The Forneys’ story
Sitting in the sunny living room in her Presbyterian Village North town-home, Joyce Forney and daughter Kathryn reminisce about how Joyce and Ross enjoyed 14 years of healthy, active retirement in Sedona, Ariz. Then Ross was diagnosed with Alzheimer’s.
“You have two retirements,” Joyce says. “The first one is having fun. The second one is not so fun.”
Having raised their children in Dallas, the Forneys chose Presbyterian Village North for that “second retirement.” (Two children live in Dallas; the others live out of state.)
It proved an excellent choice. Joyce made friends with a group of residents whose husbands were also struggling with memory-related illnesses. The camaraderie was a huge comfort for her.
“Sometimes people with Alzheimer’s do all kinds of weird things,” she says with a smile. My friends were dealing with that, too. I didn’t have to explain or be embarrassed.”
That arrangement worked for a few years. Then new problems cropped up.
“Ross would walk the dog, then get confused and return to the wrong house,” Joyce says. “He fell once. He would get up at night and get dressed, because he didn’t know if it was day or night. After awhile it wears you down.”
The Forneys tried in-home care, but that option made Joyce feel they had no privacy. Her grown children began to sense that a change was needed. Kathryn’s siblings made plans to come to town for a “family summit.” That’s when the arguments began.
“Some of us were more interventionist in nature,” says Kathryn. “Some wanted to do something right then, others wanted to wait and see.”
Joyce listened to each child’s opinion, but she made the final call: It was time to take advantage of PVN’s specialized Alzheimer’s and dementia care.
“It was a hard decision,” says Joyce. “We’ve been married 60 years. This was our life. But I can visit him at any hour. If I wake in the middle of the night, and just feel the need to see him, I can.”
Conversations she’d had with Ross, before his disease progressed, helped Joyce cope. “That’s why we came to PVN,” she adds. “We knew that option would be available when we needed it.”
Looking back on the decision, Kathryn feels that, despite disagreements, the family’s communicative style ultimately helped Joyce make a decision she can live with.
“We’re an in-your-face family,” Kathryn says. “We talk to each other all the time, and we all had different opinions. But the final decision was always up to mom.”
Then she turns to Joyce and asks, “Was it easier, or harder, having all of us offering different opinions?”
Joyce doesn’t hesitate for a moment. “I wouldn’t have it any other way,” she said.
MARY JACOBS is a freelance writer for the Dallas Morning News’ religion section, and is former news producer for WJW-TV, a CBS affiliate in Cleveland. She and her family are members of University Park United Methodist Church in Dallas.