CHAPTER 5 WHO? HIRING AND
MANAGING NURSES
Having had some shifts
that were not covered and some nurses that were sub-par while we were using a
local agency to provide nurses, we decided to hire our own, advertising in
local newspaper classified sections, interviewing, and orienting them to our
procedures once hired. Our experiences as related in Ting and I are in
italics, followed by some additional material derived from subsequent years
(not italicized).
MANAGING NURSES (Cooper, 2011)
Managing nurses is like trying to herd cats, I
jokingly told our nurse of greatest seniority here (six years). She agreed.
They are very independent. They can be warm and purr. They seem to be listening
to you, and yet….
We have had excellent nurses, judging by their
behavior and by Tina’s health. I jokingly say that they are a hand-picked crew,
but that the next time I have to choose, I’ll use a computer. Only kidding!
Monitoring
“Trust, but verify.” That may seem
contradictory, but both elements are needed. You cannot supervise and observe
everything, and you have chosen people who are trained to do what you need and
generally want to do it right. Not keeping track is a recipe for failure,
however. At the least, communications have got to be confirmed as received and
understood. Beyond that, good practice needs to be acknowledged and bad
practice corrected. Overly close observation breeds tension and resentment, but
a lack of observation may communicate that you don’t care, or it simply may
contribute to missing something significant.
Agency Woes
We started by using a nursing agency to get our
round-the-clock nursing shifts covered. The agency charged IBM about twice what it paid the nurses, which may
have been a fair reflection of the need for administration and profit. The
nurses they supplied were highly variable in quality, however, some excellent,
some poor. Getting coverage for certain shifts, such as weekend overnights, was
uncertain. Sometimes I was the overnight nurse, which I could handle as long as
the night was routine, the equipment functioning properly. Sleeping or resting beside Tina, I gave
medicines by the gastric tube, responded to high-pressure or low-pressure
alarms from the ventilator. If we had lost electrical power, it would have been
difficult though not impossible to handle alone, as I touched on above.
Hiring Our Own
“Who pays the piper calls the tune.” I decided to do the hiring and paying myself.
The extra trouble of doing so was offset by the improvement in quality it led
to. Within six months, I was hiring our own nurses, supplementing and finally
replacing the agency. I advertised in the local paper, interviewed them and
made the hiring decisions. We live in
the country, so finding our house was part of the intelligence/diligence test.
About half made it to the interview, and about half of these were hired.
I paid them more than the agency had paid
theirs, but charged IBM less than
what the agency charged, using our best approximation of the actual costs, which
included a variety of government surcharges.
There were no “off the books” dealings, as this
is a sure-fire way to get in trouble or leave you open to blackmail by a
disgruntled employee. And Uncle Sam needs our money, right?
“You get what you pay for.” I would not expect
our nurses to work for nothing, and I know they don’t work here only for the
money. By paying wages somewhat above average and by providing a pleasant
working environment, we have been able to attract and keep an outstanding crew.
The doctors have commented on Tina’s excellent condition and care. The nurses
in the hospitals have commented on the high quality of our nurses when they
have seen them in action. We have our nurses stay with Tina during her rare
hospitalizations, even though we are not reimbursed for this.
Appreciation
While on the subject of compensation, note
that showing appreciation for the help the nurses supply is important. Tina
thanks her nurses for almost everything they do for her, even if they say, “You
don’t have to thank me.” I thank them often, too, and I try to be specific when
I do so.
In November, the week before Thanksgiving,
we give a yearly bonus to each nurse, generally a week or two of her pay (thus
2 to 4%). The ones I am most pleased with get the upper of the bonus range.
Interviewing
Interviewing the candidates, I had to get a
sense of not only their skills but also the reasons they wanted this job. The
salary was attractive, especially for LPNs (Licensed Practical Nurses), who
often elsewhere would get only half the hourly pay of RNs (Registered Nurses).
To eliminate RN-LPN rivalry and to acknowledge that their duties at our house
were identical, we paid both the same rate, giving RNs some preference in
choice of shift hours.
Home care does not provide much career
advancement, does not offer the opportunity to meet a nice, eligible doctor,
does involve getting along with the family, and–in our case–a seventy-pound
Golden Retriever with an alpha-dog temperament. Smoking was taboo, given the
oxygen in use and the difficulty there would be in evacuating Tina safely in
case of a fire. Nurses were told not to come to work with a cold, as a
respiratory infection was the likeliest cause of death in cases such as Tina’s.
The highly successful coach of Penn State’s
football teams, Joe Paterno, recruited far more high school quarterbacks than
he was going to play in that key position. They were typically outstanding
athletes, and they proved their prowess when he deployed them in other positions.
When I interview, I look for something like that, some outstanding strengths
that will add to our team. The nurses vary in their stronger and weaker areas,
but as Rocky and Adrian said, they “fill gaps.”
Home Atmosphere
Some say the problem with public transportation
is the public. Nurses will tell you that the problem with home care is the
home. They can do their jobs under a variety of conditions, but the nature of
the home can make the job pleasant or unpleasant. We tried to keep that in
mind. Tina is a patient patient and a gracious and grateful one. I am
appreciative, too, though businesslike in manner. I praise in public and
criticize in private and try to be clear in communications. We have not only
detailed shift record forms to be filled out each shift by each nurse, but also
a communications notebook for information that is less technical but needs to
be shared.
One goal is to make the job a place the staff
looks forward to coming to.
We try to live up to our motto, “Tina comes
first, but everybody counts.”
Scheduling
On the refrigerator in the nurses’ kitchen, I
post two or three months of shift schedules. Each row is a date, and the
columns are for three or four shifts, typically 4 to 10 hours each, during that
date, indicating which nurse (her initials) is to be on duty. I started by
giving each nurse pretty much which shifts she preferred, and then I negotiated
to fill the less-popular hours. I required the nurses doing 16 hours or more a
week to serve some week-end time. The 10-hour shifts were almost always
overnight, from 10:00 p.m. to 8:00
a.m. If a nurse needed to take
some time off, she gave up hours temporarily to another nurse or traded with
other nurses. They marked up the schedule to show the revision, with my
approval. If a nurse did the same shift for a month or two, she “owned” it.
There was a “use it or lose it” factor. New nurses were hired to fill
particular gaps, then later tended to get more hours as the occasional vacancy
developed. With the help of my nursing
business manager, Barbara George, we almost never had a period without nursing
coverage.
Privacy
In the home care situation, we have almost no
privacy. The baby monitor connecting Tina’s bedroom to the nurses’
kitchen/headquarters is almost always on. Whatever one does or says is likely
to be known. The nurses, too, have little privacy, as they may readily be
overheard or observed. One gets used to it, and we make some effort to back off
and provide each other a bit of privacy, at times.
Of course, when you are not doing something you
shouldn’t, the need for privacy is less. Once or twice during the week, Tina
and I lock her bedroom door, use the dimmer to turn down the lights, turn off
the baby monitor, and turn on some romantic music. It’s a good opportunity for
each to tell the other, “I love you, every cell, every second; every molecule
every moment; all ways, always.”
Why Dontcha?
“Why don’t you…?” This is followed by an
explanation of how you could do more, better. It’s helpful, in offering an idea
you may not have considered, and not helpful, in seeming to add yet another
burden. My response is often along the
lines of “Yes, but….”
Nurse Michele Shehata says her grandmother has
a saying, “Everybody wants to fish, but no one wants to get his feet wet.” When
I’m given a suggestion that requires added work, I try to delegate that work to
the one making the suggestion, such as the suggestion that we make “fruit and
vegetable smoothies“ in a blender for Tina. Delegating the suggestion to the
innovator may discourage input, but it makes me feel less stressed. Often, the
suggestion is not carried out, because there were good reasons why it had not
been done already.
Why not make smoothies for Tina?
The benefits are small. She cannot taste the
smoothie, given through a gastric tube. She is already getting a balanced
nutritional diet, without evident deficiencies, although a variety of foods
might provide something not known to be missing.
The problems are numerous: We keep track of
everything she gets, to help interpret her responses, such as rashes, flushing,
etc. We would need a standard formula for the smoothie, one that we tried out
in small increments at first. The ingredients would need to be purchased, then
washed and cut up and prepared in the same proportions each time. They need to
be processed in the blender, with the excess saved or discarded. The blender
needs to be cleaned thoroughly. Who is to be responsible for each of these
steps? We have a crew of ten nurses. Which ones will do what, when? This will
need to be “charted,” scheduled. Right
now her daily calorie intake is 1,200, and her weight seems stabilized (we
almost never get her to a scale). An extra 100 calories per day would mean she
might gain an extra pound each month or two, unless something else is reduced
or dropped. What would we eliminate?
“Smoothies” died a natural, organic death.
How Many Nurses?
There are 168 hours a week to be covered in
round-the-clock nursing. We generally have had eight to ten nurses at one time,
whose weekly hours usually ranged from about 8 to about 39, averaging roughly
16 hours per nurse. As a rule, our nurses got along very well with one another,
often chatting awhile about personal matters during the change-of-shift
periods, which we did not discourage. Different nurses had different strengths
and weaknesses, but by the end of a week, what needed to be done got done.
How Old?
The nurses who worked out best for us were
typically forty to sixty years of age. All had been married. Almost all had
children. Almost all used this as a part-time job, as we did not offer health
insurance, which they typically had through other means. Compassion and
intelligence were most valuable traits, and these women became the primary
source of Tina’s social life, as we had few friends and family who could visit
us regularly. To lessen the risk of contagion, we mildly discouraged visitors.
Male Nurse?
Only rarely has a male applied for the
position. Tina would not feel comfortable with one, nor would I. We have not
ended up with one.
TLC [Tina-Loving Care]
The doctors who have treated Tina have remarked
on the exceptional care she has obviously been getting. Her continued survival
is little short of a miracle. We are proud of her and proud of ourselves.
PROBLEMS
Ah, you say to yourself, perhaps, this sounds
too idyllic. Were there no problems? The biggest ones were the rare but scary
infections Tina contracted. She came home from the Critical Care Unit with
Pseudomonas and drug-resistant methicillin-resistant Staphylococcus aureus (MRSA ), common hospital-acquired infections. Her
good general health and the use of antibiotics beat these back, though MRSA remains in her system. For five years there
were no bedsores, a major risk in these bedridden patients, and then one
developed under unusual circumstances and took many months to conquer, but we
did, with added help from a wound-care specialist, Edie Fitzpatrick, RN. During
the last seven years there have been a few viral respiratory infections, for
which medicine can do little. Fortunately, Tina’s body has fought them off.
Still, each day is a minor miracle. I have encouraged the nurses who really
rely on this job to get a second one, too, just in case.
Other problems? Young or inexperienced nurses
generally did not do well. The 20-year-old I hired as our first overnight nurse
fell asleep in her chair and remained asleep as I got up from our bed, got
Tina’s medications, and returned to administer them. That was grounds for
termination, and I did. (Recall they once shot sentries for sleeping on duty.)
During the past seven years, I fired two or three others for being asleep on
the overnight shift. One of the two was in her twenties, also. Inexperienced
middle-aged nurses tended to be nervous but generally worked out. There often
was a willingness to learn that helped offset the lack of experience and a
maturity that made them more suitable companions for Tina.
Language Barriers
A different kind of problem arose with nurse
Kim, originally from Korea. Very nice, hard-working, caring, careful. Not too
good with English, unfortunately. One day she described giving medicine X when
it should have been Y. No real harm done, but when she went to take another
job–soon after–I was both sorry to see her go and a bit relieved. “Trust, but
verify” indeed.
Even native speakers of English have some
misunderstandings due to the special jargon of the nursing profession. I’ve
kidded those trained in British schools with the witty saying that Britain and
America are two countries separated by a common language.
H1N1 Flu Shots
As mentioned above, we lost several nurses over
the issue of H1N1 flu shots. One had provoked an argument prior to this that
led to her dismissal, but the underlying issue seemed to be her dread of the
H1N1 shot. Because the flu could be deadly to Tina, an individual nurse’s
desire to avoid possible side effects could not weigh heavily with us. We could
not let some skip the shots while requiring the others to get them. Sorry. We
lost some capable nurses.
Ms. Take
One nurse’s behavior led me to court. She was a
hiring mistake, and I’ll refer to her as Ms. Take. In some senses she was a
hardship case. She was married, had five children and now custody of a
grandchild. In her interview, Ms. Take acknowledged that she was a smoker,
which was usually disqualifying. She promised never to smoke on the job, and I
think she kept that promise. She was an LPN, intelligent but not well-educated,
with more than a dozen years of appropriate experience. Preferring not to work
overnight, she was still available for any shifts we had. That might have been
a tip-off. Two of her three references did not call back, another tip-off, but
the one who did was favorable toward her. Ms. Take was chubby, sloppily
dressed, warm and articulate. I took a chance and hired her.
She started with a half-dozen hours per week.
Eventually, she was working more than the threshold necessary to qualify for
unemployment benefits. After the requisite six months of this, her performance
declined. Then she missed a shift without alerting us, with an excuse that did
not sound true. I warned her that she was on probation. A month and a half
later, on two consecutive overnight shifts, she failed to initial the numerous
boxes that document medications and feedings. I knew she was busy making beaded
jewelry to sell, which was acceptable as long as she met her obligations to
Tina. The morning of her second night she took home with her the shift report
record, the first time anyone had ever done that. I called her, listened to her
excuses, and fired her.
When the Department of Labor wanted to give Ms.
Take unemployment payments because she claimed that was fired without adequate
cause, I appealed. Two Administrative Trial Judge hearings, of about an hour
each, followed. In the first, I presented my case, and I felt optimistic. In
the second, the same judge seemed leaning toward favoring Ms. Take, who had not
disputed my narrative. Subsequently, the judge found in her favor. Reasons were as follows:
–We lacked an instruction book for the nurses
(though the forms made it obvious what needed to be done).
–We hadn’t warned her she’d be fired if she
took our property (nursing records) home (did not tell her theft was not OK?)
–You aren’t supposed to be fired for a first offense,
generally, and this was the first time she had failed to document medications
and treatments twice in a row.
We had been warned that such judges tend to
favor the employee over the employer. Looked that way. I call her Ms. Take
partly because she collected a substantial amount of unemployment money and
partly because she had lectured one of our staff on how to maximize child
welfare payments from the state. Because we paid well above the usual LPN wage,
she could honestly maintain that she could not find a comparable job in her
area. Perhaps she had outsmarted us, making herself eligible for unemployment
then getting herself fired.
In two or three other cases, we succeeded in
appealing unemployment compensation decisions concerning other nurses we fired
for good cause.
Live-In’s Relatives
When we were still using home health aides
rather than nurses, we let our foreign-born aide have her husband visit from
the Mother Country for a week or two and stay with us. He was odd but not much
of a problem, except that Tina thought his hands strayed once too closely to
her breast. Being a slow learner, I let her twenty-something son stay for a
much longer period, which came to an end when he informed me that he is “a
homosexualist,” not something the father of a teenage boy wants to hear, at
least not this father.
Theft
Theft occurred in the seventh year of our
nursing program. A week’s worth of morphine doses disappeared. A few months
later, a nurse’s book of Robert Frost’s poetry was taken. Not long after that,
cans of the protein powder supplement were taken; near Christmas, a $100 bottle
of Giorgio perfume was snatched. Another book seems to be missing, and other
items could well be gone without our having noticed them.
Fortunately, it is only “stuff.” We alerted the
nurses that they should not leave any valuables of their own behind, and we let
the matter drop, but it undermined my trust in the few nurses who could not be
ruled out as thieves.
In our eleventh year, I observed a nurse leave with about
$20 of cleaning supplies (gloves and wipes). Nurses often take our large empty boxes
home with them for storage use, and of course we have no objection. I saw one
empty box atop a seemingly empty box by the door on my way out to walk our dog.
Curious, I picked up the empty box and separated it from the box beneath, and
found that the lower one was not empty, but had a box of gloves ($8) and a
container of wetted wipes ($12). I realized the nurse was going to take the two
boxes as though empty. Initially, I separated them, to signal that I had caught
on. I quickly decided not to reveal having detected this. “Knowledge is
power.” Soon after, that nurse took the
two boxes with her, careful not to separate them in plain view. Eventually, she
will likely read this and know that I know that this attractive, intelligent,
well-paid nurse took stuff from us worth a half-hour’s pay. I’ll give her the
choice of quitting or being fired. [She quit.]
In our twelfth year,
over a period of a few months, we found we were about 20 Ativan (anti-anxiety
narcotic) tablets short, too many for a rare miscount or tablet drop. Since our
records indicated Tina was given the tablets nightly (one per night), it meant
that one of the nurses was taking the pills. We moved the pills upstairs and
brought them down nightly, already dissolved in a small amount of water. An
acquaintance of ours indicated the Ativan pills were in real demand. “Trust,
but verify,” indeed.
EMERGENCY MANAGEMENT (Cooper, 2011)
The first page of the three-holed binder we
used for our nursing information, charts, and shift reports has had a list of
instructions–and telephone numbers–to assist rapid decision-making in the event
of an emergency. We have discussed a few scenarios with the staff. Rapid onset
of respiratory infection and fire are the two paramount risks. We choose nurses
who are strong enough and well enough to drag Tina out of our home on their own
in case of a fire during the few hours a day I am typically not at home.
Most critical is providing two paths for air
flow to Tina’s lungs, so that if one is blocked, she still gets air. The
tracheostomy tube that goes into her throat is curved, so that it extends
downward inside the trachea (windpipe). Inside it has a small balloon, the
“cuff,” like a tire inner-tube, that surrounds it. This means there are two
paths for air: through the tracheostomy tube in her throat or around the tube
to exit normally from her windpipe to larynx, mouth, and nose. Depending on the degree of inflation of the
cuff, much, little, or no air flows through the space between the cuff and the
inner wall of the windpipe and on to larynx, mouth, and nose. Full inflation
seals the cuff to the wall, keeping any fluids, such as saliva, from flowing
into the lungs, a benefit. Full inflation prevents air from going to the vocal
cords, greatly limiting the patient’s ability to communicate. Full inflation
means that any blockage of the trach tube cuts off air to the lungs, a
dangerous condition. We use partial inflation of the cuff, giving us two ways
for air to get to and from the lungs, through the trach tube or around the
cuff, somewhat raising the risk of aspiration of fluid into the lungs, but
lowering the risk of asphyxiation.
We have tested our ventilators and have assured
ourselves that when they are off, Tina can still inhale and exhale through
them. Off, they do not assist, obviously, but they are not stopping the flow, a
critical concern. They have built-in batteries, and we have back-ups for them,
but if some electrical fault should cause them to stop, Tina could still
breathe.
In various places around our house are stored
plastic gallon jugs filled with tap water. We usually drink bottled water, as
our well water is mediocre. When we lose electrical power, and even when we
fire up our gasoline-powered generator, we do not have electricity for the well
pump. Water for cleaning and flushing quickly becomes an issue. We once had a
95-hour (four-day) outage, when our gallon jugs were very useful.
The gallon jugs of water could be useful
against a very small fire, and we have fire extinguishers in each kitchen, by
each exit door.
PAIN MANAGEMENT
Before her near-death exacerbation and
aspiration pneumonia in the spring of 2004, Tina rarely complained of any pain
associated with MS. This MS exacerbation that cost the remaining use of her
arms and hands and nearly cost her life, also left her with painful
contractures of the elbows and wrists.
The primary doctor at the hospital active in
her care, Dr. Richard Walker, an internist and pulmonologist, agreed with me
that we must give her protection from this pain, as it made moving her for
in-bed care traumatic and threatened her will to live. The solution was
morphine, and I was adamant that she be given enough, even if risky, to protect
her from pain. He agreed.
For seven years now, we have been able to
shield her from that pain. In a few instances, a shortage of morphine or an
oversight has left her unprotected. The resumption of that pain proved the need
for the continuing pain coverage.
Morphine sulfate solution became harder to get
in 2009. We switched to morphine sulfate pills, water soluble, thus also
capable of administration through the gastric feeding tube. We hadn’t realized
they would be half the price of the liquid. Instead of costing us $420 per
year, it is $210 per year. Since IBM
pays four-fifths and we pay only one-fifth, the liquid was actually costing a
total of $2,100/year; so, using the pills instead saves a thousand dollars per
year. The other advantage was that the pills constituted one-eighth of the
total daily dose, and thus were given every three hours. The morphine solution
was one-sixth of the total daily dose, given every 4 hours. More frequent doses
in smaller amounts help preserve a nearly constant level in the blood, and
nearly constant pain protection.
Tina gets five other prescription medications
at various times of the day and six feedings throughout the day with a balanced
nutritional fluid. She also receives cranberry juice and yogurt, along with a
host of vitamins and minerals. She is in robust health, needed if she has to
fight off viruses, for which there is little available effective medication.
All of this is kept track of with “charting,”
listing of each item, its time of ingestion, day by day, the nurses initialing
what they have given. A similar set of documents chart the treatments, from
bathing, to diaper-changing, to care for the gastric tube site to care for the
tracheostomy site, etc.
Frequent monitoring of crucial vital
signs—blood pressure, pulse rate, blood oxygen saturation, heart rate,
respiration rate and volume—has helped us catch incipient infections rapidly.
Still, an attack of pneumonia once developed within only a few hours, and we
had to call 911 and the emergency medical technicians to rush her to the
hospital, forty-five minutes away.
Intravenous antibiotics given through a
triple-lumen catheter placed in her upper chest, saved her life. A couple of other times, intravenous lines
threaded from her arm to a major vein in the chest were sufficient. The
irritation of those veins that occurred at that time means that the next time,
we will have to re-install a port surgically. It all gets a bit scary.
Several doctors have told us she has been
receiving exceptional care at home. We call it TLC, “Tina-loving care.”
NARCOTICS MANAGEMENT
To keep track of the use of liquid morphine, we weighed the
container on a scale sensitive to tenths of a gram and followed the weight
changes over time, comparing with the expected usage. We let the nurses know,
informally, that we were keeping track of this,
When we switched to using pills for the
morphine doses, we ran out a week early one time. We suspected that they
had been taken by one of our nurses who had recently had a painful operation.
We noted it in the communication book, but did not accuse anybody. After that,
we put a limited amount of the pills, about a week’s worth, by the nursing
station in the home and stored the rest upstairs out of reach.
In the eighth year of her care, we found the patient was
not feeling pain when the morphine dose was missed. We reduced the dosing about
20% every month and weaned her off morphine successfully.
SHIFT NOT COVERED
For the
first time in a decade or so, we recently had a shift not fully covered by the
nursing staff.
The nurse scheduled to work that overnight shift (10 p.m. to 8 a.m.) called in
the early afternoon to say she did not feel well and was calling other nurses
to seek a replacement. In the evening, she
called around 7 p.m. to say she was being admitted to the hospital and had been
unable to get any of the nurses she called to respond. We called the few
nurses who might have been able to help, but they could not or would not, even
when the pay was doubled for the shift. Finally, the nurse who worked to 10
p.m. agreed to stay to midnight and our head nurse agreed to come at 4 a.m.
before she went to her day job. Both got paid double time, although each would
have done this for us without that. Subsequently, one of the two was given more
scheduled hours, as she had been seeking. Two
family members, one a retired nurse, handled the four hours not covered.
OUTSIDE SUPPORT (Cooper, 2011)
“God helps those who help themselves.” Let’s
hope so. More often it seems it is, “God help those who help themselves”
because few others will do so.
The Multiple Sclerosis Society Support Group in
Mt. Kisco (near our Bedford Hills place), c. 1985, was pleasant and
encouraging. Friendships developed there that lasted years. Still, the newly diagnosed
seemed not really happy to see the wheelchair-bound members. Too scary.
Cognitive losses can create complications. The more you might benefit from such
a group, the less able you are to be involved, and perhaps the less willing the
group members are to be involved with you.
In April 2011, I received a card from the
National Multiple Sclerosis Society’s New York City/Southern New York Chapter,
inviting us to register for support groups, one or more of sixty possible
choices, to meet for 90 minutes at a session in one of the five boroughs of New
York City, some seventy miles south of us. The front cover lists these 17 of
the 60, none of which seemed likely to be worth the trek to the city….To be
less critical, I might have found worthwhile the “Caregiver” or “Cognitive” or
“Stress” groups, had they been nearer to me.
If you choose a country setting to “get away
from it all,” you must not be surprised if you have gotten a bit too far.
Our friends at Ledgewood Commons (Wendy and
Zane, Ruth and Mal) were good company and remained our friends ever since, real
psychological support. Wendy’s piece in the section at end of the book
describes the kind of emotional support that she and Tina gave each other. Ruth
was kind enough to accompany Tina and me to church and ended up converting from
Judaism to Christianity, with Tina’s sponsorship. Zane and Mal and I have
remained good friends, and their visits to us usually include a walk around
Lake Osiris and the settling of the political and economic affairs of state,
nation, and world.
Emails help, too. We have a few steady
e-correspondents.
“A friend in need is a friend indeed.” That
must mean that someone who helps you when you need it is truly a friend. It
can’t mean that one is more attractive as a friend when needy. Our friends have
had a mixed record. Types of support include calls, letters, visits, holiday
cards and presents. Some have come through. Some have not.
Neighbors have helped occasionally, but we
can’t reciprocate, and we do not request it.
Sometimes the coming and going of our nurses inconveniences neighbors,
but they do not complain. We do appreciate it and thank them warmly.
How about relatives? By the time MS gets truly
difficult, after one is 40 or 50, parents are often too old, perhaps no longer
alive or are absorbed in the problems they and their other children have.
Tina’s parents made several monetary gifts to us, representing 10 to 20 percent
of our income in those years. The trust fund in their wills represents another
few years of income, should it be needed for Tina’s welfare. Very generous and
much appreciated. Tina’s brother and his wife and their children have visited
on the day after Christmas each year, driving from her parents’ home in
Delaware, and giving us nice gifts, including a microwave oven for our kitchen
and a flat-screen HDTV for Tina’s
bedroom. We appreciate it. Her relationship with her sister has long been less
warm, so little is expected there.
After my mother cracked a pelvic bone, we were
able to transfer her here from the hospital after a few days. Medicare provided a half-dozen physical
therapist visits, after which they stopped, my mother having been “treated,”
though not greatly improved. My sister
has been a big help. Two of my three brothers have contributed to a portion of
the added costs.
In talking with our staff members, I learn a
common story: one child carries most of the responsibility of caring for
parents; the others do not. We’ve done better than that.
Granted, if you marry someone, you are taking
your chances, “for better or worse, for richer or poorer, in sickness and in
health.” If you choose to create children, you are signing up for decades of
responsibility.
We do think, Tina and I, that children have a
responsibility, an obligation, from love and duty, to assist their parents in
times of need. We hope ours will not have to be called on to sacrifice for us.
EXPECT MORE, GET
MORE?
We almost entitled this
section, “Expect less. Get less. Care less.” Expecting less helps shield us
from disappointment. Lowered expectations often lead to worse results. Poor
results need to be faced stoically. Better:
Expect more. Doing so makes you work harder, more optimistically,
toward your goals. Others often try to live up to our expectations. Low
expectations produce worse behavior. Expecting that another person will treat
you unfairly can make that person inclined to treat you less well.
Get more. Not only does positive thinking improve our
mood, it seems to attract what we are seeking. This “law of attraction” doesn’t
always work, but it probably does improve our chances. Yet:
Care less. We all prefer positive outcomes. If we let
outcomes control our happiness, however, we are vulnerable to unhappiness when
things do not go our way. Kipling advised that we meet triumph and disaster
stoically, and “treat these two imposters just the same.” Imposters? Some
defeats are to our benefit: “Every knock is a boost.” Some victories are
Pyrrhic, costing more than are worth, encouraging us to go in a wrong direction
thereafter.
“Hope for the best and prepare for the worst.” Harness
positive thoughts, but “keep your powder dry.” For example, IBM announced in August 2013 that it was moving its
retirees, like me, from their generous medical plan to Medicare plus partially
subsidized supplements. For many, the change was neutral or beneficial. For
Tina and me, it would be disastrous, falling far short of the hundreds of thousands
of dollars a year that IBM has
been providing for Tina’s round-the-clock skilled nursing care the prior nine
years. After contacting IBM , I
scurried around, planning the depletion of our savings, our retirement funds,
and money from our two families, preparing for the worst, while hoping IBM would make an exception for exceptional cases.
In mid-November 2013, we learned that Tina’s in-home
skilled nursing care would continue to be covered fully. IBM had listened to the concerns of its retirees
who were in special situations, and the corporation has modified its plans. Our
response: “Thank God. Thank IBM .
Thank God for IBM .” Our
Thanksgiving came a week early.
When we were informed
originally that IBM would not be
covering Tina’s in-home nursing care, we were advised by friends to pursue
legal remedies, to fight. The alternative was to expect that, once aware of
situations such as ours, IBM would
do the right thing, as it did. Litigating might have been useless or even
counter-productive.
###
Contact information:
Diane R. Beggin, RN
40 Sycamore Drive
Montgomery, NY 12549
DianeBegginRN@gmail.com
http://ManageNursingCareAtHome.com
Our book is available from amazon.com, bn.com, and OutskirtsPress.com: How to Manage Nursing Care at Home
Contact information:
Diane R. Beggin, RN
40 Sycamore Drive
Montgomery, NY 12549
DianeBegginRN@gmail.com
http://ManageNursingCareAtHome.com
Our book is available from amazon.com, bn.com, and OutskirtsPress.com: How to Manage Nursing Care at Home
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