WHAT THEY NEVER TOLD YOU ABOUT ELDER CARE
Secrets from the Trenches
Let me state at once that I am not
a healthcare professional. I do not have any advanced degrees in elder care
management, or even social work. I am
someone experienced in the trenches. My
brother once came into town to look after my mother for four days, and hired a
healthcare manager for $175 an hour to advise him. By now, I could teach that manager a thing or
two.
Let me also say that I began life
as the least qualified person for this job.
As a latter day baby boomer, with Gloria Steinem as my role model, I ran
from home at 18, just as my two elder siblings had done, and headed for college
with no intention of returning. After
college, ambitious and energetic, I moved to New York City in the late 70’s
where affirmative action was burgeoning with new opportunities for women. My first job was as an engineer at WOR
Radio. From the control room I spun
records for Joe Franklin, and egged on the great raconteur,
Jean Shepherd, as he wove his priceless tales.
But my heart wasn’t in being a
technical nerd although growing up as the boy my dad never had,[1] I
turned out to be good at it. I had a creative heart, and was pulled toward
writing and filmmaking. How lucky to be
born in an age and in a country where women could actually dream of doing these
things and then do them! By the time I
was 28, I was producing and writing for The
Today Show, the youngest producer they ever had, and the first culled from
the technical ranks. I got to write
scripts, and from those scripts I made little mini movies. It was my training ground for filmmaking, and
it was a profession I treasured for many years.
It allowed me to travel and to see the world. It opened the universe to me. I wasn’t responsible for anyone but myself,
and I certainly was in no hurry to get married or have children. Nurturing others was not my #1 trait. But I didn’t seem to need that where I was
going.
But what is the old saying? We make
plans and God laughs. Life has a
funny habit
of inserting detours. At nearly 40, delaying intimacy two decades
more than Jane Austin would have deemed advisable, I got involved with someone
who I thought was THE ONE. As if making up for lost time, I abdicated my
profession, and put myself into my new romance as though I were producing a
feature film. If I do have one trait,
it’s never to do anything half-baked. After three and a half years, and moving clear
across the country where my partner lived, I found myself far away from what I
knew, and with a broken heart. After a
quick trip back east for a high school reunion, I returned to find my lover in
bed with someone else. Like Chicken
Little said, the sky was falling. She used to say that I was her last chance at
happiness. But as things turned out, she
was mine.
Where do you go when you’re lost
and wounded? You go back home. Wherever that is. I was lucky that I had one.
My mom was never big on
change. If you ask her, are you hungry? She’ll respond, what time is it? Her routines are set. So although my father had died two decades
previous, my mother steadfastly remained in the house I was raised in. I moved back in to lick my wounds. I intended to stay only a short while until I
got back on my feet. But life got in the
way. Two years turned into five. Mom got sick.
Five turned into ten.
What Happened?
I saw a cartoon in a Buddhist
magazine once that I’ll never forget.
There's a movie marquee, and on it is written, COMING SOON! Old Age, Sickness, Death!
We live every day oblivious to this
truth, although this is the fate for every one of us.
At 88, Mom was like 68. Her mind was clear as a bell. She paid her own bills; she even still
drove. Through some mystical miracle of
genetics and diet,[2]
she rarely seemed like a senior, and
she certainly didn’t need constant care.
The culprit?
Two words, Statin Drugs.
Doctors will swear up and down that
the drugs they prescribe are not to blame for the most heinous side
effects. It’s not really their
fault. The drug companies in this
country put billions of dollars into university research so they can sell their
product. They are the ones that support
medical schools. They are the ones that
educate our doctors. Make no mistake;
doctors are educated by the pharmaceutical industry. Ask doctors how long they spent on nutrition
in their training in their training, and most will tell you, two weeks.
Because Mom was remarkably well to
this point, I wasn’t paying a lot of attention to the drugs she was
taking. I remembered that a couple of
years previous, her doctor had prescribed a statin drug, and she complained of
bad leg cramps. When I did some
research, I discovered that leg cramps might be one of the side effects.
I suggested she get off them for a
while to see what would happen. voilà, her cramps disappeared.
But as I say, she basically took
care of herself to this point. She took
herself to the doctor for her own checkups, and she didn’t share a lot of
it. Unbeknownst to me, two years after
the first incident, her doctor prescribed Lipitor. Mom forgot our previous conversation about
statins. But this time her leg cramps
came back with a fervor.
This coincided with another
foible. Up until this point, Mom had
been bathing herself. She never
indicated needing help. One day, something
strange happened. In the morning she was
fine, making breakfast, reading the paper, doing her routines. By afternoon, quite suddenly, she was
groggy. She didn’t seem to comprehend
things I was saying. I thought that
maybe she was coming down with a flu? I
asked if she was hungry? I made her some
soup. But she couldn’t pick up the spoon
to feed herself. So I started to feed
her, and she started trembling. I felt
her head. She was burning up. I called 911.
From this moment, our lives were
never the same. The hospital, the
subject of another horror story for another article, determined that she had a
Urinary tract infection that turned septic.
The sepsis turned toxic in her blood.
For the next week she was on fluids and IV.
The Hospital
Seniors Must Have a Patient Advocate
24 Hours A Day
As they say in France, Oy Vey.
Mom was in the hallway of the hospital for three days before they could
find her a bed. After four days on an
IV, her sepsis subsided, and her vitals started returning to normal. She could walk to the bathroom herself, but
she needed help out of the bed. She
buzzed and waited for an attendant.
And waited. And waited.
When I got cross with people at the desk, they looked at me like the
Bride of Wildenstein. I realized I, or someone, needed to be there
constantly. Once they nearly gave her
the wrong meds. You have to be there.
And regardless if it makes them
mad, you have to be vigilant.
The last straw was day five. Mom was far from recovered. Her immune system still severely compromised.
What does the hospital do? They put a young
woman with pneumonia in the bed next to her!
I told the doctor that if this was not remedied immediately I was
checking Mom out. I knew if she didn’t
die from the sepsis, she could catch pneumonia and die from a secondary
infection. The doctor only said, “You’re right. If it were my mother I’d do
the same thing.” So although she was not yet well, home we went.
The antibiotics had caused
diarrhea. We hadn’t yet put in a claim
to Long Term Care, that process would take a few weeks. So with no additional help, guess who was
mopping Mom up?
And what had been the cause of her
nearly fatal UTI? My mother may have
been bathing herself, but what I didn’t know is that she could no longer bathe
herself properly, where it
matters.
Here is what I now tell every
single person I run into who cares for a senior: If someone says they are
bathing themselves, and they don’t need any help, push further. I
believe that not bathing properly is the cause of most Urinary Tract
problems. It doesn't take a doctor to
tell you that bacterial infections arise from not staying clean and dry. This, I believe, is the #1 killer of most older
people. Mom had a low-grade UTI,
generated by oncoming incontinence that had not fully mushroomed. And although she may have thought she was
bathing herself, she was not staying clean and dry.
Clearly some things in our lives
had to change.
Long Term Care … What they Forget
Say When They Sell It To You
Mom has been paying $5,000 a year
for long-term care for over 20 years.
Here are the two most important
questions she forgot to ask, and the insurance company conveniently neglected
to tell her when they sold her the policy:
1. When
I put in a claim, do I still have to pay my premium?
The answer on
Mom’s policy is, sadly, YES.
What kind of a
policy makes you pay the premium after you put in a claim? Answer, not
a very good one. Mom currently pays
more in premiums per year than she pays out for the part time help that comes
in.
Also, she must lay
out the money for her caretakers, and then put in extensive paperwork
each month before LTC will reimburse her.
What if one doesn't have enough money to lay out?
In addition, if one line of that paperwork
is incorrect, LTC delays her reimbursement until the errors are remedied.
Which brings me to
…
2. Is it
easy to put in a claim at the time I need it?
Answer: Unequivocally,
NO.
Let me say this,
with all of her extensive wits about her, including the fact that she can still
do the NY Times crossword puzzle every day, there
is
NO WAY my mother could have
put in that LTC claim, or do the endless paperwork, or deal with the extensive
bureaucracy of her policy.
What they forget
to tell you is a lot. Before buying a
policy, you had better know that you will either need to hire someone to handle
this mess, or get the commitment of a younger relative who will agree in
advance to do it for you.
Make no mistake,
after putting in the claim the real work begins. Piles of paperwork, phone calls. The bureaucratic machinations of Long Term
Care policies are a full-fledged, part-time, thankless job, with absolutely no
benefits. Get ready for a long walk
uphill.
A Twist on Sibling Rivalry
Mom and I were never an easy
match. From the moment I came out of her
womb we were a contentious pair. My
sister, the middle child, was the conciliatory one. She married out of college, moved to
Colorado, popped out two kids, and stayed at home to raise them. She is domestic. She loves to knit and to cook. She and Mom always seemed to understand one
another in a way that was foreign to me.
By all logical accounts, my sister was much more suited to care for Mom
in her old age than me.
But an early conversation with my
sister threw me. We were talking about
how we were getting to the age of worrying how we would care for our parents. What’s your notion of taking care of Mom? I
asked her. Oh, she said without a missing a beat,
I’d
find her a really nice facility.
Although her answer threw me, I
assumed she meant that if Mom had dementia, or was drooling, and out of it,
this would be my sister's plan. As it
turned out, this is not what she meant at all.
As mentioned, my mother is
impressively young for her age. At 70
she looked 50.
At 90 she looked 70. Now at 95, she still has a better memory than
I do!
Hurricane Sandy knocked our power
out for 16 days. By day five of no heat
and trying to keep Mom warm, I called my sister, and put Mom on a plane to
Denver. Three weeks later I collected
Mom at the airport. She had loved her adventure!
She got to spend time with her
children, and her grandchildren. She met
people on the plane. The flight
attendants treated her like the Queen!
When she stepped off the plane, her cheeks were rosy, and her skin was
clear. In short, she was beaming. When she saw her doctor for her checkup, he
asked her what she was putting in her water because he wanted some. He never saw her looking so good. She told him about her journey. He
recommended she take it every year.
My sister? Not so much. She said she hadn't slept the whole time Mom
was with her. Mom fell when she was here!
she said, as though she were describing a natural disaster.
After Mom was back home, my sister
sent an email meant for both of us, stating in no uncertain terms that if Mom
ever came to Denver, she would never stay in my sister’s house again. Someone,
she declared, would have to pay for
having her stay somewhere else. She is much more comfortable in her own
home, my sister insisted. I'm only thinking about Mom's well being.[3] I
think what my sister really meant to say was, “I will be much more comfortable with Mom in her own home.
My sister has a one level house,
with three steps that go from the bedrooms to the kitchen. Perhaps they have not yet introduced grab
bars, or ramps for steps in Colorado?
Mom falls at home regularly,
generally about once every couple of months.
And many of those falls are in close proximity to her grab bars. As her doctor say, it goes with the territory
in the 90’s, (with special thanks to Lipitor for contributing to the
deterioration of the muscles in her legs).
We’re so familiar with the police who come to pick her up, that they stay
for coffee. Other than that, in her
doctor’s own words, my mother is in remarkable condition for a woman of her age
and twenty years younger.
I often wonder if my sister has
realized that she is acting as a role model for her own children when it comes
to acceptable behavior for senior care?
I end up hoping, for her sake, that her own children come to a vastly
different outcome, and realize that she is the only mother they will ever have.
I also wonder if she's read the
overwhelming statistics of how quickly seniors deteriorate when they enter a facility, no matter how 'nice' that
facility may appear. Home with family,
either in theirs or your own, is still home with family. Living with strangers
in a strange land only sails you away from where your heart lives.
My brother lives alone in a million
dollar house in the hills of Oakland, California that our mother helped him buy.
He left home at 16 never to return. He
has never invited my mother to come visit him because, he says, there are too many steps. She wouldn’t be
able to get around. I mentioned the
electric stair lift, and stair ramps,
but was met only by silence at the other end of the receiver.
Perhaps California too is behind in
innovations for the elderly?
After Hurricane Sandy, my illusions
about family were shattered. My so-called siblings had closed their home
to their mother, although, curiously, their bank accounts remain open. I knew that Mom and I were alone, and the only
real family either of us had.
I knew I'd better get to work and
get our team together.
My siblings insist that, with
notice, they are happy to come here once in a while to relieve me. But this necessitates that I go somewhere
else. They don't seem to understand why,
once in a while, I might want some down time just staying in my own home. They don't understand that this simple
request, one they themselves assume as a fundamental right in their own lives,
should be a fundamental need for me.
There is rarely a moment I ever find myself alone at home. Monday through Friday is filled with
caretakers and a housekeeper. All of
them supervised by me; with paperwork handled by me. I am on duty 24 hours with no mental time
off.
The work that I used to do as a
field producer for television had to be excised in favor of work I can do at
the computer at home. My social world
has become increasingly isolated. My
community is generally the world of words I make on this page.
I consider myself lucky to have
known such an interesting profession in my earlier life, one that introduced me
to so much of the world. Little did I
know how radically it would soon change.
It's like making love to someone for the last time; not knowing it is
the last time. You look back wishing you
had paid more attention.
Leaving
the Tribe
In wanting a better future for
their children, the WWII generation was the first to send their kids out of
town to college. Suddenly, as a culture,
we decided it was normal to have
extended family far from where we lived.
But in the evolution of species,
there is nothing normal about leaving
a tribe for a new tribe, while expecting the original tribe to still support
you. No tribe in anthropological history
exists where this was ever the case. That is not how primitive man behaved.
This is not how Native Americans behaved.
If someone lives 2 or 3,000 miles
away for a long period of time, what is normal is that they simply stop caring
for your day-to-day welfare, even if you talk to them on the phone once a
week. Not because they are
cold-hearted. It is simply how we humans
operate. When push comes to shove, we
protect the ones that are literally right in front of us.
What's Happening Inside Me
This section is literally an afterthought in this article. A friend read an early draft and said, Ally disappeared! What happened to YOU? I Need to feel who you are as you care for
your mother.
That she observed this is probably no accident. By now, I'm so used to disappearing that I
don't even notice, not even when I'm writing about the very occupation that
completely fills my days.
So here is what I'll tell you.
Resentment is a cruel, persistent little vermin.
It crawls beneath your skin, and it lives there, invisible, evil, and
noiseless. Yes, I had a choice during
all this. I could do what my brother and
my sister did, check out. I could have
moved away, and like many of us now facing our parent's aging from a distance,
let the chips fall where they may. I
could have hired a care manager at
$175 an hour to deal with the whole mess, until my mother's funds ran out, and
Medicaid picked her up.
But contentious as our relationship had always been, my mother had always
been there for me. She took me in when I
was broken. She picked me up at the
hospital years ago when I had a surgery, when I was living in Virginia, and she
was in New York. She may not have always
liked me, but she always loved me. More
important, she always showed up for me.
That went fourteen fold for my father who was the most astoundingly
generous man I ever had the privilege of having as my Dad.
This doesn't mean that the mean little gremlin of resentment flies from
my bedside. Far from it. Especially when
it became clear that my siblings unequivocally, and unceremoniously, dumped
this in my lap. More than once, I've lost it with my mother. She is often like the child who spills her
milk on the floor one too many times, then waits to be admonished. And
I do. I yell at her when my patience has been pushed. I don't mean to. And my stomach always snarls after I've done
it. But I rage at where I'm sitting in
my life. And in more moments than I'm
comfortable confessing, compassion abandons me, and I rage at my mother.
I'm working on it. Every day. Chop wood. Carry water.
Have you ever sat in meditation, and every two minutes you hear your
name called, Ally! Ally! Over and over? Needs. Needs. As Mary Oliver put it, Mend my life! Each voice cried, mend my life!
What happens when the caregiver gives herself away?
The Best Care Givers have previous experience, and are found Word
of Mouth
This may or may not be true. In any case, these are the questions I was
suddenly confronted with post-hospital, after I put in a claim to Long Term
care, and after they sent out a nurse to give her a physical, and psychological
evaluation to see if her claim was valid.[4] In
our experience, Mom’s first caretaker was our housekeeper’s sister-in-law who
recently arrived from Africa. She was
newly married to our housekeeper’s brother, and needed a job. She had no previous experience in bathing
someone else, or with any kind of general senior care. But we met her, and we liked her. We decided
to take a chance.
She turned out to be amazing, and
is still one of our extended family. Her
most important qualities are compassion and warmth. She genuinely likes people, and she liked the
work. Her attitude was fantastic. I used
to hear she and Mom laughing in the bathtub. She ended up being with us for
over two years until her first child was born.
Subsequently, the next caretaker
who came to us had extensive experience.
She came through recommendation from a friend of a friend. On Monday morning of week three she didn't
show up. We never heard from her
again. But if I had watched the signs, I
should have know that non-verbally, she was telling us every day. Every day she came, her resentment in doing
this work was palpable.
So experience doesn’t necessarily mean good care. Attitude, we
discovered, is far more important.
Where To Find Help
Word
of mouth is always a good place to start, but as with the experience above, it
doesn’t always work out. Your
particular and peculiar needs (and
senior care issues are always peculiar), will be different than nearly anyone
else.
Agencies
Calling an agency for care has its
ups and downs. On the one hand, the searching
is done for you. All you have to do is
call, and (hopefully) someone will show up.[5]
On the downside, you never know how
an agency is finding their people. One
woman revealed to me that she paid the agency to find her work. Thus, this particular ‘health care agency’
functioned as little more than an employment service. Qualifications may be questionable, but one likes
to assume that these kinds of agencies are
legit.
Lesson: never assume.
The other downside is that most
agencies pay caregivers minimum wage or a bit above. This can dampen anyone’s attitude about caring
for someone else. I made the decision
early on that I’d rather pay $20 an hour directly to the source. But even good pay does not guarantee love for
one’s work.
Going the Independent Route
If you decide to go the independent route finding caregivers, where do
you look? There is a wonderful site called Care.com. This is where I found my
two current caregivers. It is best to
know precisely what you expect
from the person you intend to hire, and tell them up front … the hours you
need, the functions you need preformed.
If someone is sitting idle reading the newspaper next to your senior for
even an hour, something is definitely wrong.
Either you have failed to communicate your expectations, or they are
neglecting their duties.
Other Useful Tips
As
I write this it is four years since Mom's hospital trauma. We now have two terrific caretakers who
really care about Mom. Every day they
arrive I remind myself just how lucky we are for this very moment. Experience has taught me, caretakers come and
go; situations change, and people leave, especially if you can't pay them full
time, or offer them benefits. A friend of mine has a sign on her
refrigerator, Don’t get used to anything.
Good Zen advice.
Her caretakers alternate, coming in
three times a week to bathe her, prepare meals, and take her to her
doctors.
Even with Long Term Care
"approving" a 24-hour need schedule, we cannot afford to have full
time help. Long Term Care provides a
lifetime "cap" of funds. I
have calculated that round-the-clock assistance would go through those LTC
funds in 18 months.[6]
So I am the third leg of her
caretaking team. I cook Mom's two
remaining meals day, and all her meals on weekends. I fill her pillbox. I do her laundry. I make her schedule. I take her shopping. I do her banking, and
other paperwork. I take her on outings.[7]
The blessing of this time has been
that I have healed my relationship with my Mother. We have negotiated our lives like a
marriage. This is not exactly where
either of us thought we would be at this time in our lives, but you can plan
tragedy just so far. We have both let go
of enormous baggage. We have come to a
truce.
The grace that now exists between
my mother and me, where once there was only strife, is a miracle. Two good wines, we’ve both mellowed with age.
She’s now 95, and Mom is healthy,
and content. She can still take short
walks with her walker. For other things,
she has a transport wheelchair with very large wheels, one seriously heavy for
a 59 year old, 4'11" woman, (that would be me), to lift routinely into the
trunk of her car. What is this doing to
my own health? I'll let you know when I
have some time to think about it.[8]
Routine and attitude are the key to
much of her health and well being. In
addition to her medication, she takes a good multi-vitamin (Centrum Silver for
Women over 50 in her case). She also
takes a daily Cranberry supplement for UTI health, a stool softener in the
morning and at night, and a tablespoon of flax seed in her cereal. We have radically reduced her intake of
gluten and sugar, as we have of dairy.
Lactaid milk is our creed, as is almost no cheese, which can stall the
digestive tract, and stuff the sinuses.
She just had her checkup. The
doctor has never seen her numbers better.
He asks if she'll be taking her annual trip to Denver again. Probably not, she tells him.
But we are thinking about a cruise.
©
2013 Ally Acker
[1] My older brother, nine years my senior, had his head
buried in a book from the second he was born.
He was never the kind of kid who threw played a round of catch with
Dad. He was neither athletically or
mechanically inclined. I took on those roles. By 16, he left home for college
for a life in academe, and never looked back.
[2] I also think that stress, or lack thereof, plays a
huge part. My Dad, who died in 1990, was
a self-made businessman and an ACE provider.
Never for a second did he allow Mom to worry about money or
survival. If he had any worries himself,
he never dared share them. Thus, 20 years after his death, my mother's life
didn't change a single drop. She's still
living the same life she was when Dad was alive.
[4] Three weeks passed during this process. Meanwhile, with no prior experience, I was
suddenly bathing my mother, wiping up her diarrhea, dressing, cooking and
feeding her.
[5] When said brother came in for his four-day visit, and
paid that astrological sum to the ‘healthcare manager,’ the agency sent a woman
on Tuesday, but she never showed up on the scheduled Thursday. The agency apologized and didn’t charge
us. Still, Mom didn’t get bathed again
that week.
[6] My sister might be surprised that her answer to her
mother's senior care, finding a nice
facility, would cost $10,000 a month on average. I'm not quite sure who has this kind of money.
Where we live on Long Island in New York, assisted living costs around $5,000 a
month. But if you cannot bathe yourself,
dress yourself, cook or feed yourself, you are not eligible for assisted living,
and your only alternative is a nursing home. Nursing homes cost twice as much a month as assisted
living. If you run out of funds in a
nursing home, Medicaid picks up the cost.
And trust me, no one in this country wants to be in a nursing home
facility as a Medicaid recipient.
[7] Mother’s particular LTC policy does not allow
relatives to be paid. I may hire a
professional or non-professional. I may
even hire a neighbor or friend. But if I
perform any services they are expected to be performed gratis.
[8] They do make lighter, smaller wheeled, transport
chairs. We've tried them. But my mother is on the heavy side. And it is
nearly impossible to push her in one of these lighter chairs over cracks in the
sidewalk.
