By Brian Goslow
Craig Fitzgerald, 43, has been “super fortunate” when it comes to his mom’s health. That doesn’t mean he and his mother haven’t thought about worst-case scenarios regarding her independence and mortality.
Even prior to her husband passing away in 1997, Florence Fitzgerald, 82, was “super organized and super vigilant” when it comes to record keeping.
“After dad died, she assembled all her documents together so I’d know what do (in case of an emergency),” Craig Fitzgerald said. “She put her will together, power of attorney papers, health-care proxy and got my name on her bank accounts in case she became incapacitated and had to go into long-term care.”
He’s also well versed on the names of her doctors and her current prescriptions. “If something should happened to her, I know where all her medications and pertinent information are,” said Fitzgerald, who recently moved to Holliston from the greater Albany, N.Y. area, in part to be closer to his mom, who lives an hour’s drive away in Nashua, N.H.
When it comes to being prepared for life’s inevitable challenges, the Fitzgeralds are a rare exception.
More often than not, people don’t prepare for possible emergencies until they’re just that — emergencies.
When an emergency involves parents, they may be the only ones with the information that’s needed to help them — and their family — move forward in the days, months and years ahead.
That information could include the name of their physicians, health care plan(s) and medicines, as well as where important financial papers — mortgage and retirement account documents, for example — are stored, whether they have a safe deposit box (and if they do, how to access it) and where to find the checkbook needed to pay bills.
It all begins with the dreaded “what if?” conversations children and their parents may have avoided for years.
“It takes a little bit of courage to have these conversations,” said Jeff Huber, President and CEO, Home Instead Senior Care, Inc.” It’s an uncomfortable situation, but dealing with it now is not as stressful as dealing with it in an emergency situation.”
Earlier this year, Home Instead Senior Care conducted a study of 611 United States adults between the ages of 45-65 to determine their preparedness to take on parental care giving roles over the next 10 years.
The “Answering the Call Program” survey found that while 41 percent of respondents expected to find themselves in a new parental caregiving position within three years, a similar number hadn’t asked their parents for information that would enable them to assist them in a health, financial or housing emergency.
“It’s not important to them till it’s urgent,” Huber said. “When it’s urgent, it’s too late.”
The warning signs are there, according to the Home Instead study.
Close to two-thirds of baby boomers’ parents have two or more medical or health conditions, including high blood pressure (39 percent), arthritis (32 percent), mobility problems (23 percent), diabetes (19 percent) and heart disease (18 percent).
Over a third (39 percent) of the respondents’ parents had visited at least four types of medical doctors over the past year; most prominent were primary care physicians, internal medicine doctors and cardiologists. Thirty percent had been hospitalized during those 12 months.
Huber said children who suddenly find themselves confronted with having to assist with a parent’s sudden health emergency are ill prepared to deal with their own emotions and the overwhelming responsibility and time associated with a loved one becoming dependent on them.
“Most start from square one,” Huber said.
To assist families, Huber’s company created a series of Senior Emergency Kit Worksheets and Checklists (found at caregiverstress.com) to be used in compiling information that would prove helpful should it become necessary. While it will take several discussions, the value of the information and directives gathered will be long lasting. “We’re suggesting fruitful conversations with your loved ones as to what their expectations are for their later years,” he said.
While 73 percent of future caregivers felt they were informed about their parents’ health situation, they were less likely to know specifics; 31 percent didn’t know how many medications their parents were taking with 49 percent of those unable to name any of those medications.
Only a third of caregivers said their parents carry a current list of medications including the dosage and frequency and their doctors’ contact information. Nearly half (47 percent) of the parents take three or more prescriptions, over the counter medications and supplements on a daily basis. Nearly half knew their parents had allergies to certain medications, but couldn’t name those allergies. Seventy percent couldn’t name their parents’ blood type.
A major illness is life-changing not only for the individual, but also for the child who becomes the caregiver.
“It can happen in a blink of an eye and it’s going to take a lot of work,” said Angela Rocheleau, CEO of Home Staff, a local home care agency. “It takes a village; it’s not something you’re going to sort through in a day and be done with it. It’s going to be ongoing and somebody is going to totally bear that burden (of looking after that parent).
“Years ago, it (your option) was either a daughter or daughter-in-law or go to a nursing home. There weren’t a lot of variations like today (when you have) things like professional home care services and adult day health and the PACE (Program of All Inclusive Care for the Elderly) program. You have certified services that can help you when you first get out of the hospital.”
Rocheleau said most adult children are prepared to do whatever it takes to keep their parents out of a long-term care facility. “They want to keep them in their own home or somewhere that’s not a nursing home. I don’t mean to be disparaging of nursing homes but most people don’t want to go there,” she said.
When that all-important discussion hasn’t been held in advance, it can be hard to catch up, especially sitting in a hospital bed with staff waiting to hear what your next move is.
“If a person’s going to remain in his or her home, with some caregiving required, a number of things need to be determined,” Rocheleau said. “First and foremost, can the person stay in the home safely? If they require special services, how are those services going to be paid for? What are the logistics of the primary caretaker working and looking after a parent, and how much time will need to be spent at their home?”
The Home Instead survey found that the majority of parental caregivers work full-time (68 percent), are married (73 percent) and don’t have children at home (68 percent).
If the children live out-of-state, they’ll most likely need to purchase home care to keep their parents at homes. While perhaps 10 to 20 percent of caregivers are close friends or family members, including members of local churches or a nephew or niece, “it doesn’t happen a lot,” Rocheleau said.
She warns against trusting the care of a loved one to newly found friends or acquaintances the children aren’t familiar with to avoid the possibility of the parents being exploited in their home. “That’s why our recommendation is that sometimes it’s best to have an agency to supervise and monitor or at least check out whoever is going to be in your mom and dad’s home,” Rocheleau said.
“People will say to me, ‘Heck, that’s very expensive, I can just get so and so, my neighbor down the street that just moved in five months ago,’ ” she continued. “But do you really know that neighbor? Have they been bonded? Have they been insured? Have they been trained? Even though it’s cheaper, might you be causing more issues down the line?”
When it comes to anticipating the transfer of property or guardianship of a loved one, it’s imperative that family members sit down and discuss what the future will bring while everyone’s thinking clearly and that everyone hears the parents’ wishes first-hand.
Everyone should know what’s going on with his or her parents, say legal experts.
Parents should meet with an estate-planner to draw up their will, which should include their intentions for funeral arrangements. All family members should know what those arrangements are.
Selecting a family member to become a legal guardian should a parent no longer have the mental facilities to make his or her own decisions is another crucial thing to discuss while the parent is able. Otherwise, the state could appoint a legal guardian from outside the family, someone who won’t have knowledge of the parent’s wishes.
Planning should include a health care proxy with the parent’s intentions about being put into a skilled living facility, DNR (do not resuscitate) desires or medical procedures that could prolong life.
Another area that can prove contentious in a family is joint tenancy, where one family member lives with a parent and pays the bills if the parent can’t. Decisions need to be made in advance about what happens to owned property when a parent dies.
When a parent needs around-the-clock care, those services often come through MassHealth (the state’s Medicaid program). MassHealth will want bank records, tax statements and proof that major assets haven’t been transferred elsewhere to avoid being included in the asset-calculation process.
Before the application process gets underway, it’s best to know what kind of record keepers your parents have been and if the answer is they were not very good ones, you’d do well to start gathering the records together in an orderly fashion prior to having to search for them in an emergency or death.
Fitzgerald compared approaching your parent about giving up some financial independence to the equally difficult discussion about giving up car keys.
“It can be a tough conversation asking them to put in writing, but people have to have these discussions with other family members,” he said. “These conversations don’t have to be painful.”