One of the cruelest ironies of life is that we often end up having to care for those who first cared for us. The parent who taught us how to ride a bike, solve a math problem and drive a car becomes the parent who needs our help getting dressed, getting up stairs, and paying the bills. What makes caring for elderly and infirm parents far more complicated than raising a child is the fact that children become increasingly independent; parents become increasingly, and sometimes totally, dependent. Simply put, the emotional toll of watching a parent deteriorate is something life doesn’t prepare us for. “Long-term care affects more than the individual,” says Randi Oster, a specialist at Long-Term Planning Associates in Fairfield, a firm that helps clients determine what care and insurance options are available to them. “It’s the people who love you who get involved.”
No two situations — just like no two families — are the same. Yet no matter how different the circumstances, there’s one piece of counsel common to all. Decisions regarding long-term care shouldn’t be made in a vacuum, since they often affect multiple generations. Imagine a family suddenly having to care for an infirm parent while trying to provide for their children’s college education as well as their own retirement. Or a young mother and father, having cared for a parent with Alzheimer’s, trying to determine how they can avoid being a similar burden on their own children.
What follows are the stories of four families who are caring for a parent in different stages of life. What is particularly instructive about them is the need to be forward-thinking and proactive. Avoiding discussions about not wanting to become a burden, about remaining in one’s own home, and about how to preserve assets, Randi warns, is a risky strategy. “If you wait for the crisis, you have no options. The gift that family members give each other is actually preparing and having these discussions with each other.”
Bridget Casey’s parents had been in good health all their lives. “My father never took a pill until he was ninety, but it seems like once it started, it snowballed,” says the Wilton resident. Her parents were living in Florida in 2006 when her mother was misdiagnosed with hydrocephalus, an accumulation of spinal fluid in the brain that causes a range of symptoms. In actuality, she was suffering from the early stages of dementia. At the same time, her father’s heart murmur suddenly became of graver concern.
Typically, Bridget’s parents would come up from Florida and rent a place in Ridgefield during the summer and fall, but in 2006 Bridget encouraged them to come up in the spring. “It was at that point,” she recalls, “that everything came crashing in on us.”
Her mother suffered a series of mini-strokes. And in addition to his heart issues, her father needed hernia surgery, then was diagnosed with a cancerous lump on his neck and underwent massive surgery. “We were overwhelmed,” Bridget remembers. “It’s like you’re operating in a vacuum or a cloud. Things started snowballing faster than I could stay on top of them.”
She was able to manage her parents’ care with the help of the Visiting Nurse Association of Ridgefield, which provided everything from skilled nursing care to homemaking services. “They were the best nurses I have ever seen. Nothing could compare to them — they went above and beyond the call of duty.” But one night it all hit her. “I woke up at 3 or 4 a.m. one morning, jumped out of bed, grabbed a piece of paper, and started calculating how much this was costing them per day. It came to $710 a day for both of them,” she says, the shock of that realization still fresh. “They could stay at a Four Seasons or the Ritz-Carlton for that. I felt guilty spending my parents’ money. I didn’t know where to turn.”
Bridget considered asking her parents to move in with her and husband, John. “But I travel a fair amount, and I wouldn’t want to leave them alone,” she explains, and her parents didn’t want to move in with Bridget and John, either. Nor did they want any part of a nursing home. “What are we going to do?” Bridget remembers thinking. “You don’t go to school for this. You don’t get degrees in this.”
She contacted an in-home care agency and found a caregiver who moved into a large, ground-floor apartment in Ridgefield with her parents, and then moved back to Florida with them last November. “She was a gift, a miracle,” Bridget says of the sixty-two-year-old woman named Dodi. “She loves my parents. We’re like a family.”
While her father’s condition has stabilized, cancer has been found at two new sites in his jaw and her mother’s dementia has accelerated. She understands that at some point her parents may need more care than Dodi can provide. “We will look at mom or dad going into a nursing home or assisted living if need be. I just hope it’s something we can stay ahead of. You’re never done planning. You’re always asking yourself, ‘What if . . . ?’ ”
Being suddenly confronted by her parents’ mortality, Bridget says, “I can tell you, I got scared, and I got a real eye-opener.” She remembers telling John, “You know, there’s something we haven’t addressed. We do everything else, but the only thing that’s missing is long-term-care insurance.”
Not only did they add long-term care to their insurance portfolio earlier this year, they also offered it to the employees of their financial consulting firm, Casey, Quirk & Associates of Darien.
“We believe we’re going to live forever, that this isn’t going to happen to us,” Bridget says. “All of a sudden, it just hits you like a ton of bricks. What do you do? And your assets can be eaten up very, very quickly. We were slow to react, but, then again, I couldn’t move fast enough.”
The Caseys purchased a plan that includes $300 per day of in-home care for each of them, “so if the visiting nurse service had to come in, we would be able to stay in our own home if we chose to do that,” Bridget explains.
Their annual premium costs are between $12,000 and $13,000, which Bridget acknowledges would be less if they had purchased the policy when they were younger. She says her parents belonged to a generation that didn’t think about going into nursing homes or assisted-living facilities. “I don’t know what they thought was going to happen. I think they felt they were going to live forever.
“I’ve always believed in insurance, but this was one area we almost didn’t think about it. Now, I’m glad we have it, for the benefit of our children. It’s dollars well spent.”
Taking Full Responsibility
Sue Frano was twelve years old in 1974 when her mother died, which left her father, Bill Bates, fifty-one years old at the time and an auto mechanic working two jobs and parking cars at Greenwich Country Club on weekends, with five boys and three girls to raise.
Following his wife’s funeral, Bill was asked by the family priest who was going to take care of his children. “I’ll never forget that. We were in the kitchen,” Sue recalls. “My father said, ‘I’m going to take care of them. They’re my kids.’ ”
When Sue married in 1983, one year before her father retired, she and her husband, Mark, moved into a relative’s apartment just two doors down from her father’s house in Byram. Four years later, with their father having difficulty making his mortgage payments, they bought half his house and made it into a two-family home.
“We were thinking we’ll start out this way. We never expected to stay here all these years,” Sue says. They’re still there because her father, a veteran of Normandy in World War II, now eighty-four, has vascular dementia, a condition caused by a clogged artery in his neck depriving his brain of oxygen.
She says it started in 2004, when his behavior began changing. “He would leave the stove on and say he was cold. He made eggs in the coffee pot. He would let the dog out and forget he did it,” she says.
By 2005, she says he couldn’t be left on his own, so she quit the job she had for twenty-two years at a real estate agency to be with him full time. “He doesn’t do anything for himself except, thank God, he can go to the bathroom by himself, and he can dress himself, but it takes a long time,” she says.
A friend advised her to have her father evaluated at the Center for Healthy Aging at Greenwich Hospital, and that’s where she found out about Greenwich Adult Day Care — “the most wonderful place in the world,” she calls it.
“They saved my life. I don’t know what I would have done without them, because I couldn’t take care of him by myself every day, seven days a week. Sometimes I feel like I’m going to go crazy, and they’re always so supportive. I can call and talk to social workers whenever there’s a problem. I wish more people knew about them.”
Greenwich Adult Day Care not only has spared Sue the burden of being an around-the-clock caretaker, it has had positive benefits for her father, who calls it “the shop,” because he thinks he’s still going to work. Monday through Saturday, he is picked up by the Transportation Association of Greenwich (TAG) around 9 a.m. and returned home by 5 p.m. Activities promote socialization skills and include everything from games and picnics to trips to the Bruce Museum and Audubon Greenwich. “It reminds me of when my kids went to preschool,” Sue says. “He’s just so much more social now, it’s amazing.”
Yet she’s all too aware of the keen difference between caring for kids and for a parent with dementia. “You know what the worst part is?” she asks. “We know he’s not going to get any better. That he’s going to become more and more of an infant.”
Sue, the second youngest of her father’s children, says she gets a lot of help from Mark and her two teenage daughters, Nicole and Kaylee. But other than a brother who lives in Goshen, who occasionally takes her father for long weekends, she gets no help from her other brothers and sisters. Either they have never offered to help, or they admit to Sue they can’t handle doing so.
Sue’s father doesn’t have any long-term care insurance, so he currently relies on Medicare. Because he gifted his half of the house to Sue and Mark in 2005, he won’t be eligible for Medicaid, which will pay for long-term nursing care, until 2008.
Currently, her father receives $984 monthly from Social Security, $165 of which goes toward medical insurance to supplement Medicare. But his day-care program costs roughly $1,400 per month, Sue says. And while the Southwest Connecticut Center on Aging helped her get a grant from the Alzheimer’s Association and Medicare picks up a portion of the cost, “we’re still in the hole every month.”
“What really bothers me is that my father worked as a mechanic, with an eighth-grade education, and he also worked at night at a gas station to take care of eight kids and now he could use some help, and we can’t get it. All I want to do is keep my dad safe during the day.”
Because of her experience with her father, Sue says she’s already told her girls, “I never want you to let us live with you.” For now, though, her concerns are more immediate. “My father always said to me, ‘Please don’t ever put me in a home,’ but I know that someday I’m probably not going to be able to keep him at home. But as long as we can keep him here, we will. Hopefully, God will take him before he ever has to go to a nursing home.”
The Right Nursing Home
Rachel Faiga has three children and a full-time job. She also has nearly two decades worth of experience dealing with people in all stages of long-term care. She is the founder of Long-Term Planning Associates, a Fairfield firm that helps clients determine what long-term-care options are best for them — her grandmother Esther was one of her first clients. But even with all this experience, there were some things even Rachel wasn’t prepared for.
After Esther was moved from her home in Missouri to the Jewish Home for the Elderly in Fairfield, Rachel was shrouded in the guilt the way so many others are in her situation. “I remember feeling that I can’t get to my grandmother enough.” While Rachel’s mother, Meryl Kessler, flies in regularly from Virginia to help with her care and Rachel’s sister, Rebecca Bloom, moved to Fairfield, in part to help care for her grandmother, nothing seems like enough.
“It’s not only about the person getting the care. It’s really about what happens around them,” Rachel says. “You want them to be comfortable, to have the best of everything, but oftentimes they’re not aware of what’s going on.” What that means, Rachel continues, “is that you never feel like you’re doing enough. The burden of guilt about wanting to get them the right care falls to the people around them who love them.”
Rachel, who has lived in Fairfield her whole life, refers to her grandmother as an incredibly high-functioning woman. “At eighty-seven she was still tutoring children, going on walks everyday, and could bend down with less of a grunt than I could.”
A series of mini-strokes, though, led to memory loss, and almost overnight, Rachel says, she was afraid to be alone. Other signs of increasing dementia followed. She forgot to pay bills. She lit matches at inappropriate times, leaving burn marks on her carpet. The family filed with the insurance company and soon her grandmother had round-the-clock in-home care.
The major decision, however, came when the five years of coverage her grandmother’s long-term-care insurance policy had called for ended. Should her family place her in a facility in Missouri or move her to be near family?
Ultimately, the decision was made to bring her to Fairfield. The facility provided the kind of security they were looking for. She would have her own room on a floor in which the residents shared common areas and were prevented from leaving unattended. As soon as she met Medicaid’s requirement of less than $2,000 in assets, all of her expenses would be covered. More than her grandmother’s, Rachel’s life suddenly changed.
“Before, the whole onus was on my mother,” she explains. “She was the main contact person for everything. Now I was the closest person.” Tasks and responsibilities, big and small, became part of Rachel’s daily life — making sure her grandmother had the proper clothing, was taking her vitamins and getting her hair cut. Even discerning the source of the irritation to her lower back (it turned out to be a mispositioned pillow). “No matter how high the quality of the place,” Rachel explains, “things can fall through the cracks. There are always going to be little things that come up that you need an advocate for.”
Rachel acknowledges that long-term-care policies aren’t for everyone because the premiums can be onerous, depending on when a policy is purchased and the financial situation of the purchaser.
Rachel’s mother, Meryl though, is a believer. “Thank God for long-term-care insurance,” she says. “It’s been a blessing. I never thought I’d have to take care of my mother, or supervise the running of her home. I wasn’t prepared at all. I had to take over everything,” Meryl says. “Some of my friends are still skeptical about the need for long-term-care insurance, but I tell them to do it while they’re healthy, and not wait.”
Creating a Space of Her Own
Westport’s Sheri Wertheim, the youngest of three siblings, says she’s always been the caregiver in her family. “It’s my nature,” she offers, more with resignation than pride. When her older brother had open-heart surgery, she took him into her house for two months to help him convalesce. As her father lay dying in a hospital, Sheri was the person he took aside and instructed on how to sell his dental practice.
Sheri is now in the midst of her greatest familial challenge. Her eighty-six-year-old mother, Millie, moved into her house in May 2006. Although her mother is in the early stages of Alzheimer’s, she’s in good health otherwise. “What’s so cruel is if she continues to decline mentally but physically her health remains good, she’ll have to live in that diminished quality of life, that bubble, for a long period of time.”
According to Sheri, she began noticing her mother’s memory loss when she visited her in Florida two years ago. “One of the signs that something is amiss is when something is amiss. Even if it’s as simple as where she keeps her hammer. People like her get agitated if things aren’t where they are supposed to be.” She urged her mother to move north that Thanksgiving, but her mother wasn’t ready. “She didn’t want to lose her independence,” Sheri says.
Eventually Sheri convinced Millie to move north. “She knew she was ready. She had even given up driving eight months prior.” Through her first summer in Connecticut, living with Sheri and her husband, Ram, Millie appeared to be adjusting well. But in September Sheri says, “it became more difficult for both of us.” Her mother started having trouble getting up and down the stairs, complained about always being cold, and wanted to go back to her home in Florida, which had remained unsold because of the softening real-estate market. Meanwhile, Sheri found herself shuttling her mother to doctors’ appointments and completing medical and insurance documentation as she also investigated the possibility of getting her into an assisted-living facility. “No one just takes you. You have to network and find out what resources are available to you.”
Particularly helpful was Maybeth Wirz, a senior care specialist in the human resources office at Westport Town Hall, who provided Sheri with a concise list of what government entitlements and resources were available to her. From there, she was able to assess her options, the levels of care and the costs — whether to put her in a day-care or assisted-living facility, or even a facility that specialized in Alzheimer’s care.
Sheri says her mother had a long-term-care insurance plan, but only for in-home care, which she calls “a mistake. She should have had one that also covered going into a facility. I think everyone should know that, because you can’t get that kind of coverage when you already have Alzheimer’s. I never thought to ask her about what kind of coverage she had.”
She arranged to have her mother enter a day-time program at Waveny Care Center in New Canaan, but that encompasses just thirty hours per week. “My entire life revolves around her schedule,” she explains. But more poignantly she points out the real toll the deterioration is taking. “It’s emotionally very difficult to see your parent not be herself and be totally dependent on you.” The constant worry periodically leaves her depressed and crying. “I’ve had anxiety attacks, which I’ve never had before.”
The situation also has an impact on her relationship with her husband and two adult children. Dealing with her mother’s issues is emotionally draining. “Sometimes you need to vent. I get stressed, and sometimes my husband has to deal with me when I’m like that.”
Compounding the stressful nature of being her mother’s primary caregiver is the feeling that other family members, other than her husband and children, aren’t sharing the burden. “No one ever says to me, ‘Can I help you?’ ” Worse, she says “is when you get all your relatives asking, ‘Why aren’t you doing this or that?’ ”
Still larger issues regarding her mother’s care remain. “You don’t know financially what’s going to happen down the road, how quickly she’s going to decline or when in-home care is no longer enough. You have to prepare for all the eventualities. Right now she’s in the in-between stages. She’s like herself, but she’s not. Our plan is to keep her here as long as possible.”
Millie had been living in a guest bedroom, but last November she moved into a large converted space over the garage. “She’s got two TVs, her own bathroom and shower, and separate heating. It’s seventy-four degrees all the time. She loves it up there,” Sheri says. Although she hasn’t reached any decision as to what to do if her mother requires greater care, Sheri continues to investigate her options. “I’m a planner,” she chuckles. “I like to look down the road.” A necessary fact of life, that, in the end, is no laughing matter.
Long-Term-Care Insurance 101
Sometimes you don’t need a crystal ball, Ouija board or tarot cards to get a glimpse into your possible future. Statistics foretell the story.
According to a 2002 study published in the Journal of Medical Care, 44 percent of people who turn sixty-five will spend some time in a nursing facility. In Connecticut, where there are several wonderful facilities, the average cost of nursing-home care is about $130,000 per year, and the average length of stay is two-and-a-half years.
There are ways to prepare for such costs. Unlike standard health insurance, which applies to illnesses from which the insured is expected to recover, long-term-care (LTC) insurance covers circumstances where one needs supervision or help in their basic, daily activities. Typically, it provides for patients who’ve had a stroke, developed Alzheimer’s or simply become too frail to care for themselves.
Long-term care insurance is purchased privately and covers what publicly funded Medicare and Medicaid do not. Generally, Medicare, the federal government program that covers adults ages sixty-five and older, doesn’t pay for what’s known as “custodial care” — assistance with daily activities, such as dressing, bathing or going to the bathroom. It only covers medically necessary care, whether in a nursing facility or at home.
Medicaid, a state and federal program, pays for certain health services and nursing-home care for people with low incomes and assets below a maximum threshold.
Like health insurance, the permutations of LTC insurance are many, but they fall into two basic categories: the benefit period (anywhere from one or two years to unlimited) and the daily benefit amount.
The big question often becomes: “When is the right time to buy long-term-care insurance?” Although prices jump significantly after age 58, there are other factors to take into consideration — your relative health and expenses such as children and retirement. “It’s always good to learn about it now even though you might choose to do something later,” says Randi Oster, a specialist at Long-Term Planning Associates in Fairfield. “Getting educated doesn’t mean you’re making a decision.”
Where to Turn
Caring for an elderly parent is more manageable if you do your homework and prepare. And there is no lack of resources available online. Here are some helpful websites to get started:
American Association of Retired People (AARP)
Answers to frequently asked questions on LTC, a review of the key components of LTC insurance policies and links to agencies that rate LTC insurance providers. www.aarp.org/money/financial_planning/sessionfive/longterm_care_insurance
Connecticut Partnership for Long-Term Care
State program, in concert with private insurers, that helps residents meet their LTC needs without depleting all of their assets to pay for care. www.CTpartnership.orgGuide to LTC Insurance from Federal Citizen Information CenterAmong the many useful links are consumer-protection standards for LTC insurance and an extensive long-term care policy checklist. www.pueblo.gsa.gov/cic_text/health/ltc/guide
Long-Term Planning Associates
Fairfield firm whose objective is to help clients determine what LTC insurance options are best for them.www.ltplan.com
National Care Planning Council Comprehensive set of resources for LTC planning with links for elder-law issues, estate planning and family conflict resolution. www.longtermcarelink.net
Today’s Caregiver magazine
Bimonthly publication with articles on caring for specific afflictions, LTC issues, and an online discussion forum.
U.S. Department of Health and Human Services
Links for people on Medicare, including a tool for obtaining customized long-term care (LTC) information. www.medicare.gov/longtermcare/static