SPECIAL REPORT:
Family travails underscore urgency of elderly care
by Kelly Feser Eells

The "Neal girls," five in all, grew up in an affluent Los Angeles suburb. Today, they make their homes from Carlsbad to Santa Maria, each tending her own family - some raising stepchildren, some "second families," one is a first-time mom at age 40 and another, at age 45, is raising her grandchildren.
Until a little over a year ago, the only things they had in common were genes.
Then, their mother got lost on her way home from a market where she'd done her biweekly shopping for 47 years. It was the first, and perhaps only, time she was conscious of her brain "misfiring," and it infuriated her. But the oldest daughters, the ones with the keenest memories of their mother pre-sobriety, suspected a relapse and dismissed the incident, advising their sisters to do the same.
This was, as anyone familiar with Alzheimer's disease knows, the sort of "advice" that grown children rarely forgive themselves for.
The market incident was soon followed by a series of similar ones, the spaces between them increasingly shorter. And, with each succeeding "momisode" - as the 42-year-old daughter calls them - the Neal girls found something else in common. Humiliation unified them when their mother got naked at a grandchild's confirmation ceremony. Insomnia is another thing they all now share (although the middle daughter, the one who found her mother semi-conscious in the old family pool, thinks of hers as "night terrors.")
They admit that they are as jealous of their mother's attentions as a newborn quintuplet is, especially now, what with their mother recognizing them less and less and at briefer and briefer intervals.
But the ugliest common denominator, according to the 42-year-old, is their guilt. "We're all feeling guilty about something all the time lately," she said. "Sometimes I can't even decide what I should feel worse about: wishing it was over, that she was, you know, gone; or hating her for checking out on me, for not being a grandmother to my youngest son."
Like her sisters, she puts selfishness at the top of the list of things she feels guilty about. "We're all selfish in one way or another. Though Kathy probably in more ways than one" she snickers, referring to an ongoing battle with a sister over a piece of heirloom jewelry both claim was promised them. "God, we have it good compared to most people our age."
The Neals do have it good 'compared to most.' Their long-absent father, at 78, is only semi-retired and still a strong financial presence. He has paid every bill his daughters - who, with the exception of the aforementioned Kathy' do not comparison shop - send him on his estranged wife's behalf. He refuses to let his daughters' husbands contribute to their mother-in-law's care, although one husband regularly offers to.
Last May, when it was clear that their mother could no longer live unassisted (See Sidebar), the Neals voted four-to-five to keep her in her own home, hire a day nurse, and rotate visiting duties. The dissenting vote came from the youngest sister, who argued, alternately, that, "This house doesn't mean anything to Mom anymore;" "You two (Carlsbad and Santa Maria) won't ever visit; and "Mom needs a lot more than a day nurse."
As it turned out, two of the youngest daughter's protests proved valid within weeks: Their mother did need more than a day nurse and the house seemed to frighten her. She was always trying to get away from it, and, according to one of the nurses, would often stand in the middle of rooms or inside closets crying.
Moreover, just two of the daughters were near enough, at 20 and 38 miles away, to do any "drop-in" visiting; none of them had thought to do background checks on the first nurse until, as the middle sister points out, "It was too late. She'd already quit. And stolen who knows what."
For "practically the whole summer," the Neals continued to find more things to feel guilty about. "My older sisters were in denial about Mom at first, so they're, like, stupefied every time they see her."
She notes this matter-of-factly, but the implication is clear: She does not trust them to make recommendations about their mother's care. "They come up with suggestions we've already thought of, after-the-fact stuff. I've been giving myself a crash course in Alzheimer's. We're all learning as we go along."
Their mother's dementia has been more accelerated than the average Alzheimer's sufferer, which they attribute to the after effects of alcoholism (liver disease) and the various medications she has been taking for that condition, as well as medications for hypothyroidism and "too many prescription narcotics to name."
By September of last year, they decided their mother would be safer in a nursing home, one with licensed medical staff on-call and available 24 hours per day. Their mother was, by that time, completely oblivious to her surroundings, and had received a concussion, broken wrist, and a number of cuts and bruises as a result of it, despite their having Alzheimer's-proofed the house:
Installed pressure-sensitive alarms, placed on the floor of the bed, and motion detectors, placed at all points of exit or entry, which sound an alarm in the night nurse's room; purchased a lock-out stove, which functions only at predetermined times of the day; removed sprinkler heads, rose bushes, and poisonous plants from the back yard, in addition to enclosing the pool with a nine-foot high security gate; removed all large (to keep footpaths clear) and/or sharp-edged furniture, etc.
And despite retaining three full-time, in-home employees: two home care aides (paraprofessionals who, in addition to providing assistance with the activities of daily living, are trained and capable of providing dressing and simple wound care, routine catheter care and irrigation, and, in some states, see the Home Care Aide Association of America, administer medication) and one housekeeper.
Though the costs for such measures, e.g., $19,000 for two high-end alarm systems and various household renovations, plus $4,500 per month in manpower, would be prohibitive for most American families, the women's father has refused to consider alternatives.
The current cost for nursing home care in the counties of Los Angeles and Ventura averages a little more than $45,000 annually. And, the women argue that, should their mother's physical health deteriorate, requiring more intensive in-home medical care, the current $54,000 per year cost would increase to "who knows what.
"It's so wasteful," said the youngest daughter. Her 42-year-old sister agrees, adding, "It's as if Dad feels guilty, too. Like he's buying our mother's forgiveness."
Neither Medicare nor most private health insurance covers the care that an Alzheimer's patient may need - and they may "linger on" for 10 years or more, depending on the state of their physical health prior to the onset of the disease.
Ventura resident John Toal's mother, at 86, is in relatively good health after suffering a stroke 18 months ago. She has minor ambulatory problems, but, "Thank God," shows no signs of Alzheimer's or any other form of dementia.
She moved to an independent living facility over a year ago, which, Toal notes, "has helped her regain her independence."
He explains that, for many seniors, in-home care can be intrusive. "And it's much more expensive." In addition, "most providers are from foreign countries," so there are often cultural difficulties or language barriers to overcome, adding to the "anguish portion" of having a stroke.
Toal is pleased with The Fountains, where his mother enjoys a private, 800-square-foot apartment and many amenities designed specifically for seniors. "They provide the residents with transportation, for shopping, church, etc., and there are different activities offered every day. There's also weekly or biweekly housekeeping provided, and a choice between two or three meals per day. Plus, there's an internal 'watchdog' set-up, since you eat with the same people each day. So, if someone - who hadn't already indicated they had other plans - doesn't show up for a meal, staff is alert to it immediately. The facility has a 24-hour emergency response system, with nursing staff on call 24 hours a day, as well. And I know it works," he adds with a laugh, "because I tripped it (one of the emergency buttons his mother's apartment is equipped with) accidentally, and they were at the door in a minute."
As it is at all independent living facilities, residents must be ambulatory - walkers are acceptable - and able to dress themselves. The Fountains, Toal said, also has an on-site hospital, plus a separate wing for residents who become (chronically) ill, "including Alzheimer's, etc. They're guaranteed a place in the wing, with no maximum stay; for the rest of their lives, is what it comes down to.
"You come in at the lowest level, $2,300 a month in my mother's case. That's with the two-meal-a-day plan." He smiles, " She likes to take her coffee alone in the morning."

© 2002 The Ojai Valley News

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