5/5/2008
The sign outside the modest home near
The Tessandori’s
LOUIE & LEE
Established 1942
A logo of a dancing couple is at the top.
Louie had that sign made sort of as a gag. And because he’s in love with his wife, proud of what they built together.
Their life together was something he could always be sure of.
If only he could be sure of how it would end.
Like a lot of people, he and Lee worked, they fought, they made up, bought a house, raised kids, had some good times, got through the bad and never thought about the ending.
Once a dashing young couple who dressed to the nines and had a new car every year or six months, Louie and Lee are now old — 87 and 88. They have a house with a mortgage, two small pensions, Medicare and no real plan for their final years.
The years that once stretched out ahead of them have closed in tighter and tighter, slowly grinding them into a crisis they never saw coming.
Families all over have similar tales.
They’ve worked all their lives and never thought to ask for a handout. But they don’t have enough set aside to carry them through as their health care needs steadily and dramatically increase.
They have no plan for how to handle their assets as their mental functions dim.
Although they have family — in particular, a grandson who’s put his life on hold to help out — family members have their own lives and don’t have the expertise to handle serious medical issues.
Any one of those problems is tough.
Put them all together and add denial, guilt and emotional baggage, and caring for aging parents can be a thorny thicket.
It’s just life
That’s where I found daughter Donna Weeks in late February. I was looking into a complaint about a possibly shady car deal and met the Tessandoris, their grandson, Gilbert Tessandori, and Donna.
When I asked Donna about the car, it was like taking the key rock out of a dam.
She had no idea what to do. Mom’s Alzheimer’s was getting worse. She couldn’t take care of her bathroom needs and was passing out. Dad was falling down. He had another wreck. He called constantly for her help, then demanded to know why she was doing this or that. He was the
victim of identity theft and meekly paid the bogus bills. He borrowed money
from the bank for no reason. His doctor said he shouldn’t drive but never called the DMV.
Donna’s brother, Rick, lives out of state. The burden was all on her. It was making her crazy.
Her hair was falling out!
Then her dad went out and bought what he thought was a $1,500 used truck — only the price really was $15,733, and he used all the family’s savings to buy it. Gilbert and Donna tried to take the car back and explain Louie’s growing dementia, but no dice. That’s when I called.
By then, Donna was resigned about the truck. It wasn’t the dealer’s fault, she said.
It was just life, old age.
“The problem is, he doesn’t think he’s old,” Donna says of Louie. “And he doesn’t understand that my mother has a disease. He shouts at her because she doesn’t respond. Then he drags her around to doctor appointments two and three times a week because he wants them to give him a pill that will make her his wife again.
“It’s heartbreaking.”
Unprepared and overwhelmed
Most families are unprepared for Alzheimer’s.
The personality changes and memory loss are hard enough, but the logistics can be overwhelming, said Joni Carrithers, community relations director at Oakdale Heights Assisted Living and a board member at the Alzheimer’s Disease Association of Kern County.
“(Families) don’t understand the level of care that’s needed and what insurance covers and what it doesn’t.”
For instance, Medicare doesn’t cover assisted living costs and cuts off coverage for nursing home care if the patient is deemed “unrehabable.”
“Families can get blindsided,” Carrithers said. Keeping a parent in skilled nursing can cost more than $7,000 a month.
Long-term care insurance is your best bet, but it’s expensive and you have to buy it long before you need it.
Medi-Cal does have a long-term care program, but most families don’t know how to access it, she said.
There is help if you know where to look.
Managing the parents
“Who knows this stuff?” Donna asks in frustration. “No one tells you these things. How do you know where to go?”
Donna, an accomplished pilot and retired teacher with two master’s degrees who runs her own business in
Louie hasn’t been much help, refusing to use a walker. Falling, wrecking the cars. Gilbert does his best to watch out for him and take care of Lee. But it’s tough.
Lee’s condition is worsening. She’s passing out more often. It’s harder to get her out of bed. She can’t control her bodily functions and has regular trips to the hospital. Louie can’t lift her, but still tries, hurting his recently replaced
shoulder.
And so it has gone for months.
Finally, Donna talks with the case workers at the Alzheimer’s association and comes up with a plan.
She works with Medi-Cal to get Lee signed up for coverage and applies for a spot at the
It’s a long shot — the home has a waiting list. But the administrator tells her it looks hopeful.
For the first time in a long time, Donna thinks there might be some light in this tunnel.
Then she reminds Louie about it one afternoon.
“SHAFTER?!” he says. “No way! No way in hell!”
Donna tries to get him to remember that they’d talked about it before and agreed it was best for Lee.
“She’s not going to no home,” he says.
Donna throws up her hands and walks out, leaving all the paperwork on the table.
“I’m a hardheaded wop,” Louie chuckles.
Later Donna tells me Louie has been calling and crying, begging her for the last year to do something about Lee.
“It’s like Jekyll and Hyde! I listen to him talk to you and I can’t believe it. He sounds so lucid. ‘Everything’s just fine,’” she mimics. “Then he’ll call me crying and screaming, all emotional over the slightest thing. And he doesn’t remember. I swear, he’s worse than my mom.”
Donna fights back the tears. She’s back to square one.
Developing a strategy
When I tell Donna’s story to Kris Grasty, head of Kern County’s Aging and Adult Services Department, she sighs in shared frustration.
Grasty’s own dad, 89, is at the same stage as Louie. Like Louie, Grasty’s dad was a traditional patriarch who had always been in charge.
“It’s the hardest thing in the world, to watch your parents deteriorate.”
There’s no one fix-all answer, she agreed.
The key is developing strategies and creating a plan for the next phase and the next. Her agency can help.
Yes, there are support groups. But Grasty can also hook people up with in-home support services that go from help with housework to full-on nursing care and for all different income levels.
The agency can also get you in touch with Meals on Wheels, day-care options, and info on nursing homes, assisted living facilities and on and on.
Plus, Grasty has lots of tips.
Such as, you don’t have to confront your parents about the driver’s license issue.
The DMV has a form you can use anonymously. The DMV will make the driver come in for a recheck and if there’s a problem, they’ll yank the license and never reveal it was you who ratted them out.
Denial and defiance
This is a bad day for Lee, who sits at the small kitchen table with a faraway look.
“She just don’t say nothin’,” Louie says. “Someone called earlier and she didn’t say a thing on the phone. Nothin’!”
I ask Louie if it’s difficult taking care of Lee.
“No,” he says dismissively. “We get along just fine. We don’t need a thing. Isn’t that right?”
Lee nods vaguely, her vibrant, plucky personality wiped clean.
Louie, on the other hand, is chipper.
“I may be aging, but I don’t know what old is,” he says, and I swear he has a twinkle in his eyes.
I ask how he and Lee met, and he tells me he met her when she was working at Baxter’s Drive-In as a carhop.
“It’s taken me 65 years to get my tip back,” he says with a grin.
Donna rolls her eyes.
Oh, yes, she says, her dad is one charming fellow when he wants to be. And good-looking, which still comes through. Growing up, all her girlfriends had crushes on him.
Lee was like a Vogue model, always in the latest fashions, towering heels, her makeup perfect, not a hair out of place.
“It would kill her to know this is happening to her,” Donna says. “First of all, how she looks. But no control over her bodily functions? My God! She would die. The only thing that saves her is that she’s not really ‘here.’”
Donna and Louie have been at a stalemate the last two weeks. There’s no more talk of putting Lee in a home. But no new solutions.
I was set to visit one day, but Lee was back in the hospital, another stroke or fainting episode. Donna didn’t even know about it this time.
She’s mulling options for how to deal with her parents’ finances but keeps coming back to conservatorship — messy, expensive and difficult.
“And he (Louie) would fight me; I know he would. And now he has the money to do it,” she says, defeated.
After Louie spent their savings to buy the used truck, he took out a $20,000 equity line on the house.
Why? I ask him.
He needs to fix the driveway, he says. The neighbor put up a low brick fence and Louie keeps hitting it with his car. The brick fence has been there for years.
When I ask if he should be driving, he snaps at me.
“Of course!” he glowers, displaying some of the legendary Tessandori temper. “That’s just Donna spreading that stuff. I don’t have any problems.”
He and Lee gave Donna power of attorney over their medical decisions. But Louie was adamant he would never give power of attorney over his finances, having seen a relative steal his mother’s savings through power of attorney decades ago.
But now Donna’s scared, and not only for their health. All that paperwork she signed with Medi-Cal, sitting untouched since Louie told her weeks ago he wouldn’t allow Lee to go to a home, makes her uneasy.
“I feel like I’m liable for whatever he does, but I have zero control over him. ZERO.”
Consulting an expert
A lot of people think only of conservatorship when facing this situation, but consult an attorney who works in the field and all kinds of options open up, said Sharon Garrett a longtime local attorney who works in elder care with a focus on Medi-Cal.
“A lot can be done to preserve and arrange assets so the at-home spouse can be taken care of and the family receives the benefit of the estate that they worked hard for and are now fearful that they have to spend down or the state will take it when they’re gone,” Garrett told me.
Even in situations where the parent is uneasy about power of attorney, Garrett urged families to seek legal counsel so the parent knows the process.
“Sometimes when they understand the financial process and see how it can all work, they do become willing.”
Consulting an attorney is not cheap; Garrett charges $250 an hour. But you have to balance that against the cost of nursing home care at potentially $5,000 a month for five years or longer. Low-income families can also get help through Greater Bakersfield Legal Assistance.
Most people also believe to get Medi-Cal coverage they have to get rid of everything they’ve worked a lifetime to earn. Not true.
“We just had a case where the person was terminally ill,” Garrett said. “Medi-Cal told the family he had to spend down his IRA, which was $80,000 to $100,000. That’s not true.”
Elder care and Medi-Cal are complex issues. Attorneys spend whole careers picking through the fine print.
But something can almost always be done.
“Most people are blown away,” she said about the options available.
Making the decision
By late March, things have changed again at the Tessandori house.
“My dad called and said we need to take her,” Donna says. “So a lady from the home came and interviewed her, and she’s on the waiting list.”
Later, Louie calls Donna, distraught. He doesn’t want Lee to leave, but Donna reminds him her health is failing. He acquiesces.
“He just never thought their lives would turn out like this,” Donna says.
He even agrees to meet with an attorney. But Donna can’t get an appointment until the end of April.
“It’s a race against time at this point,” she says. “Will they be alive? Coherent? Dad still refuses to use a walker. He’s just asking to be bedridden.”
Lee is doing better in the last few days — talking, remembering who people are, closer to her old self. It’s giving Donna “the guilts.” Maybe Lee shouldn’t go to the home. But she’s so frail, and the fainting ... Donna seesaws over her decision.
“It’s a nice place,” she says of the home, more to herself than to me. “It’s clean. No bad smells.”
Donna can’t shake the memory of her dear grandmother dying in a home years ago. It smelled awful, and her “noni” was in terrible pain from bedsores.
Things start moving fast the last week of March. Lee is at the top of the waiting list; they can take her right away.
I go with Donna March 25 to fill out a mountain of paperwork at the home. Jackie Patterson, the Alzheimer’s division marketing director, helps. Still, it takes more than an hour.
They need all the Tessandoris’ financial information, loans, assets, income, accounts, insurance. Lee’s personal information, maiden name, year of birth, place of birth. Would Donna like to pay for the beautician once a week, what types of meds does Lee take, how should they handle her laundry, what about dental care? Is she a voter?
Some questions bring up a lot of history, Donna’s eyes well but never spill over.
Then the biggie, an advance directive, what to do if Lee falls terribly ill and needs extraordinary measures to live.
Donna doesn’t flinch, “DNR,” she says firmly. Do not resuscitate. Lee was always adamant that’s what she wanted.
“I hope she goes quick. God, doesn’t that sound awful?”
Jackie stops shuffling her papers and looks at Donna. No, she says. It doesn’t.
‘You’re doing the right thing’
Two days later, March 27, we’re in the waiting room at Dr. Mike Komin’s office where Lee is examined before being admitted to the home.
She’s doing better than I’ve ever seen her.
“Look at that,” she says to Donna and nods toward the door where a good-looking, young man is standing. Donna ducks her head and laughs.
“Well, she’s not dead yet.”
In the exam room, Komin asks Lee some questions, and she zings back answers. How’s your heart? “I have a fine heart, thank you.” Is this your daughter? “Well, she was this morning.” (Other times Donna is “that nice lady.”) You’re just a spring chicken, aren’t you? “Only if I lie a lot.”
Komin and Donna tell her she’s going to the “hospital” to have some tests.
When we get to the home, there’s more paperwork, which admitting nurse Donna Daniel helps Donna with. More questions, more history. Donna’s having a hard time.
Nurse Daniel grabs her arm and looks directly in her eyes, “You’re doing the right thing.”
Donna needs to get Lee’s things into the home but doesn’t want her to see. I take Lee on a trip around the rooms to distract her. She’s warm and friendly with the other patients, “Hi!” she says brightly. “I’m Lee,” and holds out her hand.
Meanwhile, Donna is hanging Lee’s clothes in her little closet. Her hands are shaking.
It’s close to lunchtime and the smell of food catches Lee’s attention.
“Can you chew food?” Nurse Daniel needs to know.
“Boy, you can’t stop me!” Lee says, eager to get to the dining room.
The attendants settle Lee at a table and her focus is quickly taken up with her meal.
Donna stands outside in the hall, watching her mother. She wants to sneak out so Lee won’t ask when she’s coming back, but can’t resist a final hug.
Later she asks, “Do you think she knows I’m not coming back?”
Alone in a quiet house
It’s been a week and Lee calls Louie nonstop, asking, “When are you coming to get me?”
It tears him up. He doesn’t leave the house, not even for the daily jaunt to Carrow’s for breakfast that he used to take with Lee. He sits in his recliner. Donna convinces him to see a doctor for depression. Gilbert finally coaxes him out to Carrow’s one morning in early April to meet with me.
He still hasn’t gone to see Lee.
“I think she went in too quick,” he says, sipping coffee, tears reddening his eyes.
He never wanted to be like his friends, men whose wives had become ill and gone into homes. He and Lee would ask after the ladies and the men would start to cry.
“That’s gonna be me now,” he told Donna shortly after Lee left.
The house isn’t as stressful now, he says. But he has no desire to go anywhere, not a senior center, not to visit relatives, nowhere.
“Not without her.”
Adjusting to change
The Golden Living Center staff is completely smitten with Lee, who regularly straightens their shirts and tells them if she admires their shoes or hair.
On my last visit in late April, she is lying down, but perks up as soon as I walk in. She compliments my purse and wants to know about the recorder I fumble with. She tells me her daughter, Donna, is “smart as a whip.”
The food here is great and the people are top-notch. She’s a little bored, she says. But that’s OK.
Whenever I ask about when this or that thing happened in her past, she furrows her brow and gives me a look.
“Oh, don’t ask about that! I can’t remember that stuff!”
She doesn’t seem bothered or sad when I bring up Louie and says she hasn’t seen him in a long, long time.
He had visited only a few days earlier.
“You should have seen ’em,” Donna tells me. “Smoochin’ on the couch like a couple of teenagers.”
The inevitable
Things have changed dramatically for the Tessandoris since I first met them in February.
Lee is safe and cared for. Louie is home, where he seems to want to be, for the moment.
And the details of their financial lives are being worked out with Louie’s consent.
Things are settled, for now.
But Donna wonders how long it will be before she has to rush back for another crisis and prepare for the next phase, and the next.
It shouldn’t be surprising things have gone this way for the Tessandoris, they’re typical Americans.
I don’t think there is a more age-averse culture on Earth than ours. We don’t plan, on a personal level, for the inevitability of old age and we don’t address it very well on a societal level, either.
Which is just silly since we’re all gonna be there some day — if we’re lucky.
The coming glut of aging baby boomers bearing down on our inadequate elder care system will likely make or break, or both, a lot of its pieces. We’ll have to see what is left in its place.
Donna’s not waiting. Throughout this ordeal she told me over and over that her new mantra is “plan ahead.”
“I will NOT end up like my parents,” she vowed.
