How to discuss care options with elderly parents

By Beth Macy
published Sunday, Aug. 17, 2008

The bank didn’t call until her father tried to draw his third cashier’s check. If he simply sent $98,000 to cover the taxes on a prize he’d won — to a post office box in Canada — the lottery would send him $1 million.

Or so the scam went. Barbara McVi cker rushed to the bank, only to learn that her father had already sent away $68,000 of his life savings. Then came the FBI investigation.

Then, more drastically, what McVicker calls “The Talk.”

She had tried before to initiate the conversation with her elderly parents. But like many, they were reluctant to discuss such an uncomfortable and role-reversing subject.

The elephant was definitely in the room, and he needed some answers:

With her father’s dementia setting in, would her parents consider moving to a retirement community with assisted-living and nursing care? What life saving measures did they want if they weren’t able to make the decisions on their own? And whom did they want to speak for them, if and when they couldn’t?

It’s a conversation that even the most functional of families doesn’t care to begin, says McVicker, who lives pa rt time at Smith Mountain Lake and writes and speaks nationally about elder care.

“It would be nice to have these conversations in a calm way, while everyone’s still mentally with it, and sooner rather than later,” she says. “But generally, for most families, it happens out of a crisis.”

Talk — while you can

It doesn’t have to be that way, experts say.

If Martha Anderson had her own billboard in town, these are the three messages she would have flashing from it:

• Everyone over the age of 18 should have a medical power of attorney or an advanced medical directive, a document that outlines their medical wishes in the event of a life-threatening accident or illness.
• All seniors should designate a durable power of attorney, a person who can make legal and financial decisions for them if — and only if — they can’t. (The medical and legal power of attorney designees are not always the same person.)
• The sooner the family talks about end-of-life issues, the better everyone will be able to cope.

Anderson, a clinical nurse specialist at the Carilion Center for Healthy Aging, recalls her own mother announcing to her: “I’ve put you down as my power of attorney.”

That was fine, but Anderson needed to know more about what her mother really wanted as she battled end-stage cancer. “I told her, 'We need to talk about your end-of-life decisions.’ ”

Anderson was surprised to learn that she and her mother had vastly different views on the subject. Her mother wanted to fight the cancer every step of the way, suffering through painful treatments because she felt that doing anything less would be akin to quitting.

When Anderson suggested she turn to a hospice for in-home end-of-life care, her mother balked, saying that she just “wasn’t ready yet.”

That’s another message for the billboard: Too often families don’t get their maximum hospice benefit because they don’t call hospice workers in early enough. Hospice is a service that’s fully covered by Medicare. It offers 24-hour access to a registered nurse and pain management, as well as a team of social workers, chaplains and volunteers.

A physician’s referral is needed, expert acknowledgement that the patient is on an irreversible decline. Anderson’s mother could have been served by a hospice for six months, but in fact she died after just two weeks of hospice care.

“You only get a certain window of time to make the decisions on your own, but the problem is, no one knows when that window is going to start to close,” she says. (See sidebar on Warning Signs: When to Start 'The Talk.’)

At the center, Anderson advises adult children to broach the subject of a parent’s decline gently. “Have the talk with them, not to them,” she says, ideally offeri n g choices.

You’re going to fall if you continue taking your medications wrong. I can fill your pill box once a week, or the pharmacist can fix you a “blister pack,” or you can have a home-care aide come weekly and d o it for you.

Out-of-town adult children often have the most trouble navigating their parents’ care. Anderson knows families in which the opinions range from “There’s nothing wrong with Mom” to “Mom needs to be in a nursing home.”

“Getting everyone on the same page is so important,” she says. “I recommend the children have weekly phone conferences and compare notes and, as much as possible, spread the work among them.”

But even then, Anderson and others say, the coordination of care typically falls on one person — more often than not a daughter or daughter-in-law.

Never say never

In her book, “Stuck in the Middle: Shared Stories and Tips for Caregiving Your El derly Parents,” McVicker recommends this as the ideal setup: The siblings have a family meeting and divvy up the tasks — with one taking the finances, the other medical issues, the other the house and lawn — before broaching the subject with Mom and Dad.

In reality, she says, one sibling works full time, another lives in Californi a and the other, usually a daughter who may still have her own children at home, becomes the primary caregiver.

In McVicker’s own case, she became her parents’ point person because she lived closest. What started out with weekly chores of grocery shopping and lawn-mowing gradually evolved into “becoming like a CEO of my own nursing home,” she says.

The experience eventually led to a second career as a trainer, author and speaker on the subject. Among her suggestions to adult children:

• If a parent asks you to promise you’ll never put him or her in a nursing home, say this: “In all honesty, I can’t promise that. But I can promise that we’ll make the choices together, and we’ll do it out of love and concern for your safety and well-being.”
• If your siblings aren’t volunteering to help, ask them to pitch in and be very specific about the tasks yo u want them to do: I’m going away next week. Who can mow Mom’s lawn for me? Who can take her to the doctor?
• Talk candidly about finances — a subject that 70 percent of adult children have yet to broach with their parents, according to a MetLife-AARP survey. “You don’t know if you have to work five more years to support your parents or if they have so much money under the mattress that you can all go on a cruise,” McVicker says.
• If parents resist, approach the subject as, “I’m trying to get my finances together, and I need to know …. ”

If all else fails, McVicker adds in all seriousness, try tears.

“You guilt them into it. Will they be doing a Medicaid spend-down? A reverse mortgage? Are their wills and power of attorney documents in place?

“These are things that you as the caregiver need to know bec ause it could affect you financially, too.”

'Give them room’

That same collaborative approach should be used to handle medical decision-making, according to Dr. Soheir Boshra, a Carilion geriatrician who directs medical and palliative care in several area nursing homes.

Boshra has watched many patients prolong their suffering because they didn’t make their medical wishes official.

“Most elderly people still don’t have an advanced medical directive,” Boshra says. “Some patients may have a will and their wishes are known to the family, but they hide it from the doctor because they feel they’re not ready yet.”

Some even withhold Do Not Resuscitate orders from hospital officials because they mistakenly believe the patients won’t receive quality care, she adds. Still others name a far-flung relative as their proxy but neglect to ask the person or even tell him or her about it.

When a parent’s demise is imminent, too often families fail to call in hospice soon enough or to request a palliative care evaluation at the hospital or nursing home, she says. A relatively new offering, palliative care aims to reduce the severity of symptoms — typically via pain management and reduction of medications — rather than delaying or curing the actual disease.

“It’s important to give them room,” Boshra says. “Don’t rush them to make a decision.

“Communication is a big issue between the family, patient and doctor,” Boshra adds. “I know it’s hard, but it’s best to discuss it [end-of-life desires] early on when the patient’s still healthy.”

It’s a lesson McVicker finds herself relaying again and again in her work. “I think that’s why baby boomers are so panicked that we won’t have learned anything and will just repeat our parents’ actions.

“Being proactive is just the nicest gift we can give our kids.”