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
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
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
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
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
"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
"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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