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The Caregiver's Bible

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The Caregiver's Bible Powered By Docstoc
					                                   The Caregiver Planner

                                         Chapter one

                                       “It is what it is”

“CANCER!” The most devastating word you can attach to any loved one. What do you
do when you hear the word? Cry? Yes. Pray? Yes. Now what? In some small way I
would like to share our experiences for the first thirty days after we heard the word, to
give you the benefit of what we did right, what we did wrong, what we assumed
incorrectly, and what others have done correctly. You don’t have to reinvent the wheel if
you stand on the shoulders of others.

What just happened to you? You became the caregiver. You just joined a club that you
didn’t want to join: The Caregiver Society. They speak a foreign language called
“Medical-speak”. There is either little orientation, or there is an overwhelming amount of
information all written for lawyers by lawyers, and very little of it sticks to you because
you, like the patient, are also still in shock. In addition, they are taking tests you’ve never
heard of, all designed to help you make life or death decisions. Fortunately my wife was a
nurse so she could keep up better than most.

A PET scan, we don’t even have a pet. And if we did, it wouldn’t be in there!
Sound overwhelming? It can be.

Rule # 1. Stay calm. You probably have more time than you think. Get more than
one opinion. And not just from doctors.

When my daughter called us, we were in Florida and she was in Georgia. More
specifically, my wife was in K-Mart. “Mom I have Cancer!” Sheila immediately rushed
home and yelled from the door “Get off the phone!”

“I’m on a business call.”

“Lizzie has Cancer!”

I excused myself from the call, started to cry, and in ten minutes we were in the car
headed for Georgia. Six hours later, we arrived in Atlanta, so early in the morning that we
decided she was sleeping or at least needed some rest, so we went home to bed. What a
joke that decision was because there was very little sleep. About 5 A.M. we decided to go
to the community hospital whose emergency room was where she was taken when she
collapsed. This was not a major Cancer Center like Emory, St. Joseph’s, or Northside
Hospital, all of which were available within 30 minutes.

When we arrived, the local Oncologist told us there was a mass pressing on her
esophagus the size of a golf ball. Not a pretty mental image. She was in tremendous pain
                                                                                             2


and, as a result, pretty doped up. Your first instinct is have some one go in and cut that
thing out “Stat!” This is where we learned Rule #1 Stay Calm. You have time.

We asked ourselves a couple of questions. “If we had the choice, would we have
admitted Lizzie to this hospital for major, dangerous surgery of the throat for a biopsy?”
“No.”
What clinched the decision was when Sheila asked the doctor who would be reading the
results after the biopsy was taken, and he replied, we think the doctor who does this
might be in Monday or Tuesday. Wednesday at the latest. It was now Friday and maybe
three days from now someone capable of reading the results might show up. “Not going
to happen!”

I tell you this story not to put down this doctor. This was a remote hospital and not in
any way designed to do what was needed. In addition, doctors have no idea as to the
financial capabilities of each patient for treatment. He was simply giving me the options
he knew he had available at the time. We had other options, however.

I also want to point out that by a second opinion; I don’t just mean doctor’s opinion. You
are not the first person to go through this ordeal. It is astounding how many of your
friends, relatives, and acquaintances have gone through something like this and you
didn’t know, or just didn’t really notice. The Caregiver’s Society is much larger than you
can imagine.

Rule # 2 Contact your insurance Agent or carrier immediately. Ask for a case
worker to be assigned to you. Inquire about where to get second opinions.


The mistake we made was: we should have contacted Lizzie’s insurance carrier right
then. There are rules for payment. The earlier you speak to your agent or insurance
company direct, the better equipped you will be later on. I’ll go further into this in a later
chapter.

And this leads me to:

Rule # 3. Speak up and be assertive!

If something doesn’t sound right, ask questions. If the answer comes back in medical-
speak, say you didn’t quite understand and press for the answer you do understand.
Nurses and Physicians Assistants (PA’s) are great interpreters, especially when the
doctors are too busy. Actually for us it was a Respiratory Therapist who was caring for
Lizzie that quietly suggested that another local Hospital had the best Thoracic Surgeon
for this type of biopsy. Robots, Star wars technology, you name it was thirty minutes
away. Had we not taken the time to explore our options, and followed the advice of the
local doctor, Lizzie would not have gotten the state of the art treatment that was minutes
away. You have time; don’t just blindly follow the opinion of the person to whom you
are talking.
                                                                                            3



 And now we entered the realm of Medical Politics. Getting one hospital to release a
dangerously ill patient to another hospital is not as easy as you may think. There are good
reasons, I’m sure, for the safeguards, but it takes an act of Congress, or a UN resolution
to move someone to another hospital. BE ASSERTIVE!

What is Cancer?

You will find out pretty quickly that Cancer is a generic term. Breast Cancer is not
Leukemia in many ways. Neither is Lung, Cervical, or Prostate Cancer. Treatments are so
different. Even one person’s experience with your exact type of Cancer may be entirely
different from yours because of their family history, height, weight, Etc. Some cancers
get cut out; other’s get radiation, and still others Chemo. There are combinations of
treatments. Lizzie was radiated first, and then subjected to six months of Chemo.
Radiated some more and now a chemo pill for two more years.

Chemo therapy itself is a generic term. There are so many tailor made cocktails for each
brand of cancer, that you would go crazy trying to relate one person’s experience to
someone else. Why am I telling you this? Because you wouldn’t be human if, in the quiet
of your own brain, you didn’t ask the very first day “What are my loved one’s chances of
surviving?” We want a number between zero and 100%. This is what drives us to push
for a quick diagnosis, because we assume the number is attached to it.

The reality is that it is far more important to get an accurate diagnosis than a quick one.
You can’t speed up the process. It will take days for labs to assemble the jigsaw puzzle
that is your cancer and when all the smoke clears…..”It is what it is”.

 For the first thirty days you are going on a rollercoaster ride of emotions. In Lizzie’s
case, it took several days to get the biopsy, send it to several labs, and get the blood work
analysis. The biopsy did however tell us the tumor was now the size of a grapefruit, and
everyone seemed to be using the word “Aggressive” far too much for me.

You are in Limbo and the patient is in pain. Friends and family want to know what’s
going on and you have nothing to tell them but “Aggressive Cancer!” But now you are
using test names by their initials “CT”, “Pet”, and it surprising how quickly you have slid
into medical-speak. Then the light starts coming in. “We know it’s Lymphoma.”

“Hodgkin’s or Non-Hodgkin’s?”

“Non Hodgkin’s.”

“B-Cell or T-Cell?”

“We don’t know that right now.”

“Which do we want it to be?”
                                                                                           4



“B- Cell. T-cell is very rare.”

And off to the internet or library we go. This is a good thing, but it also is the source of
much useless information like that % we are really looking for. The more we know about
the disease, the better questions we’ll ask and the better plan we will construct, because
after all, we are now starting a long journey. It will change many lives. It requires
organization, good tools, and planning.

On a Thursday morning about 9 A.M. a clear eyed young doctor said,

”It’s T-cell. Very rare. I believe we should begin Chemo therapy Monday at the latest.”

What he didn’t say, but I still heard in my brain was “or she’ll die!”

Knowing that the senior physician in this particular practice was well respected, with
thirty + years experience in Cancer, Johns Hopkins in the resume, it would have been
easy to say “OK, let’s get on with it.” But instead I asked “How many of this type of
Cancer have any of the members of your practice treated in the last thirty years?
(Remember rules 1 and 2)

“Two or three. As I said T-cell is very rare.”

“What other places for treatment do you recommend?”

“There is Emory Clinic in Atlanta and of course MD Anderson in Houston.”

“Let us think about it overnight.”

Prophetic words because all you’ll do is think that night. Sleep comes sporadically. You
do still cry and that’s healthy.

Rule # 4 Get to the right treatment center. Get one that specializes in your
particular disease.
                                      Summary

Rule # 1. Stay calm. You probably have more time than you think. Get more than
one opinion. And not just doctors.

Rule # 2. Contact your insurance Agent or carrier immediately. Ask for a case
worker to be assigned to you. Inquire about where to get second opinions.

Rule # 3. Speak up, ask questions, and be assertive!

Rule # 4. Get to the right treatment center. Get one that specializes in your
particular disease. And remember “It is what it is.”
                                                                                            5




                                         Chapter 2

                                           Tools

Even though you are rapidly sliding into medical speak yourself, you must realize three
things:
    1. Your Patient is so doped up and in shock; they are hearing little and retaining less.
        Just because you tell them something, don’t expect them to remember it.

   2. You are also in some shock even though you are busy. You also won’t remember
      many important things later.

   3. You are about to be given volumes of paper, business cards, reports, histories,
        forms, paper, paper, paper. It will be important later, but in the first thirty days,
        comforting your patient, getting the proper diagnosis, arranging for treatment,
        communicating accurately to friends and relatives are a much higher priority.
There are three critical tools you will want as soon as possible: your caregiver’s journal, a
small tape recorder, and some form of internet site for communication.

What is the caregiver’s journal?

It’s personal and easy to make. Get a 3 ring loose leaf notebook, with pockets inside the
front and back cover, and the following inserts:
        a. A few clear plastic business card holders. Each page holds 10 cards on each
            side, so five ought to do it. That’s right 50 people, remember this is a journey!
            You will meet so many doctors, technicians and nurses on this journey that it
            will rapidly be impossible to keep track of them. They all have business cards.
            Ask each for one and put it in the business card holder of the journal (not in
            your pocket or purse). It will become invaluable later, either in the case of an
            emergency, when you need that one telephone number now, or, when you
            need to respond to an insurance inquiry, a social security history required for
            disability, prescription aid, you name it. You are going to need all those
            names, addresses, and phone numbers later. If you don’t properly save them
            along the way, you are asking for a real pain later. If the doctor doesn’t have
            one now press him, or his assistant, to get you one later. BE ASSERTIVE!
        b. Next get clear plastic folder type inserts. These are two page folders with the
            front cut diagonally in half. Basically they hold papers. Label them:
                a. Test results
                b. Orders
                c. Schedule of medications
                d. Blood work
                e. Living will and Power of attorney (More about this shortly)
                f. Plain paper for notes and questions you want to ask
                                                                                  6


c. Get Blank calendar paper and begin with the day you heard the word
   “Cancer”. “At a glance quick notes” (brand name) has a good Monthly
   planner type calendar that works just fine. Be brief on the calendar. An
   example of one day might read:

Cat scan
 Radiation
 Drain fluid from chest
ICU

or

Bone marrow test
Blood work
Met Dr. _____

Later keep a record of symptoms like vomiting etc. so the Dr. will know what to
prescribe.

Fill every box daily even if it’s “Travel day”.


This is an example of a chemo monitoring page for symptoms.
                                                                                           7




Finally, keep the journal with you at all times. After about two weeks I won’t have to tell
you this. You’ll feel naked without it. I can’t stress how valuable this record will become.

We ended up deciding to go to MD Anderson Clinic in Houston for Lizzie’s treatment. A
new hospital means new tests and a lot of questions. When did she have her CAT scan in
Atlanta? Did she have a PET scan? Do you have any results? What treatment did she
have at the old hospital? When? Who did it? Your journal becomes an invaluable
reference for the new doctors.

 (Pet scan is probably looking for the Cat in the CAT scan. You’ve got to see some
humor in all this or you’ll go nuts!)

You might be realizing by now that YOU are the primary information gatherer and
disseminator. This is a good thing. You will learn more than you know, and it will help
you understand the healing process. Don’t fight it. Keep asking questions even though
they are busy.

Next, we arrive in Houston and I don’t know what we expected. We didn’t expect the
vast, factory-like environment: Rows of people, voices blaring over speakers, vibrating
                                                                                             8


beepers like you get in restaurants when your name gets called, bald people in
wheelchairs all around you, and most of them looking very sick. Everyone waits their
turn. We are in the Cancer Cafeteria of health. This is not your mother’s local hospital.

Don’t think I’m bashing the clinic, because when you see the level of care they offer, to
people from all over the world, and the numbers that they have to deal with, it all
probably makes sense. But it is still a shock the first day.



Get a small tape recorder.

At MD Anderson you also realize that you are not only talking to a doctor, but more
specifically, he’s a research scientist. If you think medical-speak is tough, try scientific
medical-speak. You tend to nod approval and just accept everything said as gospel
because, after all, you are now at the mountain top. This is where they are doing the
clinical trials on our very rare specific form of Cancer (aggressive, lymphoblastic, t-Cell,
non-Hodgkin’s lymphoma), the forefront of the battle. Everyone is on a tight schedule
and very busy. The air is thin, but we still don’t have a complete diagnosis. No
diagnosis, no chemo! Remember my brain is still stuck in “or she’ll die” mode although
it was never stated.

If you think you have questions on the first day, by the end of the first week you really
know the right questions to ask. The question is do you understand the answers? A small
tape recorder is essential. Politely ask each time you meet the doctor if you may tape the
conversation, the answer is always “yes”. The doctor probably appreciates that he won’t
have to keep answering the same questions repeatedly, and they are very aware of how
difficult the communication process is between doctor and patient. Also you and the
patient will hear different things and the tape will be invaluable as an arbiter. It will also
help you prepare your questions for the next meeting. Write them down as you think of
them in the journal.

Again, I need to caution you. In the first thirty days, your patient will not retain nearly as
much as you think they are. To make life and death decisions you need as much quality
info in as short a time as possible. A tape recorder can be a valuable memory for the first
thirty days.

So we arrived in Houston September 1 and it’s now the 11th. Back on August 27th in
Atlanta I thought I was faced with “Either we start chemo Monday or……”, and hear it is
over two weeks later, no chemo, strange town, “WHAT’S GOING ON?” I finally blurted
out to the doctor “Why haven’t we started any treatment yet!” (Remember rule 1: Stay
calm. You probably have more time than you think.)

He patiently said, “There are over twenty different forms of T-cell tumors, many of
which don’t respond to chemo. She also had five rounds of radiation, and it amplifies the
effect of chemo in your body. So we needed to get the radiation out of her system.”
                                                                                             9


“Also we needed an accurate typing. Since she didn’t have all the markers, we had to use
a process of elimination. I’m not going to shoot a 32 year old mother of two with chemo
if I don’t think it will work.”
Trust me I just translated a much lengthier, medical-speak answer. You will need a tape
recorder to make that transition. Now I knew why I was at the mountain top and this is
where I learned rule #1. I think it would have been nice to know most of this two weeks
earlier though.

Get on the internet.

OK, you don’t have an email address and aren’t computer friendly, still keep reading.
From the instant you uttered the word “Cancer” to one single other person; the news
traveled the world twice. That’s a good thing. And all your friends, family, and even
acquaintances want to help in some way. There are two immediate things you can do:

   1. If you aren’t computer literate, find a friend or neighbor who is. Have them show
      you two sites:

           a. Yahoogroups.com (Free)
           This is a broadcast email site, totally private, and you completely control who
           reads what’s on it. Essentially you can either send people an invite to join by
           email or, if you know their email address, you can simply add them. We set up
           this site and 65 people joined. I write one small update and it gets sent to 65
           people simultaneously. If they send a reply, it comes just to me and not all 65
           people. You have no idea how much people appreciate your updates. If you
           use yahoo, you can expect that 3 times the number of people you have on the
           site will be reading your stuff. It gets copied and recopied.

           b. Caringbridge.com (Free)
           This is a variation site that we found much later. It is easy to set up and has
           more options. You essentially start a group and post your messages. I don’t
           think it sends an email. People can visit the site and see you messages and
           updates, see photos and sign in to a message book. This seems like a very
           positive uplifting site and a combination of the two might be the ideal.

           I can’t emphasize enough how important this kind of communication will be
           to both help and support you as well as the patient. You can organize meals,
           rides, or child care requests, and the feedback and emotional support will help
           you through the BLUE DAYS you both will experience. Caringbridge.com
           will be a source of ideas and suggestions that will surprise you.


       2. The first thing you request on the internet is for volunteers to give Platelets or
       Blood. The response will be overwhelming and the need is huge. You learn later
       that you can’t replace blood after you use it. You can only store up ahead so make
       the request right away. Platelets have no typing and can be donated every two
                                                                                    10


weeks. It takes several blood donations to equal one platelet donation. Platelets
are gold to the cancer patient or should I say truly the gift of life!


Lizzie was admitted to the isolation ward for her first round of Chemo because
they were short of beds at MD Anderson. While taking the elevator up to see her,
I struck up a conversation with a man I had noticed in the chapel that Sunday.
When he punched the twelfth floor, I asked who his patient was. He told me it
was his father. His diagnosis was the same as Lizzie’s and he was about two
months farther down the road, so I was really interested in talking about his
progress. Unfortunately, his dad had developed a lung infection during his first
round of Chemo. Since chemo destroys your immunities, they had to stop the
chemo treatment to fight the infection, basically with massive doses of platelets.

 They were from a small farming town in southern Illinois of about 2000 people
and had little family. MD Anderson was low on platelets and so his fight was
taking a long time. Unaware of how the town found out about his plight, he was
elated to find that seven people from that town were flying in, at their own
expense, to donate platelets for his dad that Sunday, the next Monday, and so on,
until the emergency was over. It was one of the most uplifting elevator rides I’ve
ever taken. It not only points out the importance of platelets, but the greatness of
small town America. Although practically a stranger, once the town understood
the need, they dropped what they were doing and rallied. It reminded me of the
story about a farmer’s barn burning down. It mattered not who they were,
Americans dropped what they were doing and gathered to rebuild immediately.
This will be the effect of communicating to your neighbors. It’s OK to let them in
and it let’s them help.

Pride and Cancer don’t mix well.

                                    Summary

1. Start your Caregiver journal
2. Get a small tape recorder
3. Get on the internet and ask for Blood or better platelets.
                                                                                             11


                                        Chapter 3
                             Vital Paperwork and other needs




There are two vital documents you need to get signed by the patient immediately.

 First, each hospital has a medical information release form giving you permission and
allowing hospital staff, insurance companies, labs, doctors, etc to give you written
information about your patient. We have elevated a person’s right to privacy to an
incredible obstacle in this country and not getting this document signed is like trying to
go abroad without a passport.

When we were accepted into MD Anderson, they gave me a list of things to bring like lab
results, CAT scan results, medical history, etc. I was flying to Houston on Monday and
this was the previous Friday. Without the proper paperwork, I never would have made it.
By the time you know you need this paper, you’re under the gun.

Don’t wait to get it! Make several copies.

Second, not as immediate but just as important, is a Living Will Form. Each hospital has
their own form (and may demand you sign theirs) so get used to it and get on with it. I
know it seems like a delicate conversation you didn’t plan on having, but both you and
your patient are now faced with your mortality.

YOU NEED TO DO THIS FOR THEIR SAKE RIGHT AWAY! YOU CAN ALWAYS
MAKE CHANGES LATER.

The Chapel at MD Anderson is square room, with three rows of pews. The altar is on the
diagonal, in the middle of the room. The door comes in at a corner, so each row faces ¾
of the 100 or so congregation. After about three weeks of going to Sunday Mass, I
realized that each week I would see four or five people with tears, or a look of crying, on
their face. This was not in response to some eloquent sermon but rather a visible private
moment I was observing. Then it dawned on me that each person I was watching tear up
was not the patient, but rather the obvious caregiver. They were fighting back their tears
for the sake of their patient, but the seepage was uncontrollable. Somehow the patient
was talking more easily to God than the caregiver. The patient was facing their illness
and mortality directly because they owned it by now, accepting God’s demands on them
with grace, while the caregiver was being given an entirely different burden to bear. You
get incredibly busy as a caregiver, that, when quiet thinking time arrives, it will surprise
you what your body will tell you.

Why am I telling you this?
                                                                                             12


Among the first persons your need to contact, after family, insurance person, etc. is your
priest, rabbi, minister, or whomever that good listener friend is that you are willing to
share any vulnerability, fear, or dire thought with. Your patient needs you strong and
healthy for this long journey. Depression is an integral part of this disease. It will hit the
patient and probably the caregiver and their family at different times. One of the most
critical and difficult things you as a caregiver will have to do, is to repeatedly lift up your
patients spirits. It is essential to the healing process. But who will lift your spirits?
Friends! Clergy! Prayer! Family! All will play their part. This is one of the more critical
tools you’ll need for the process. I repeat “Pride and Cancer don’t mix”

                                          Summary

   1. Get permission to request medical information on the patient.
   2. Get a living will
   3. Call your clergy or confidant “best” friend.
                                                                                                           13



                                                 Chapter 5

                                         Taking care of…..yourself!

For the first few weeks after Lizzie was diagnosed, when I was in that dreamy state just
before being fully awake, I would start my day by rolling over and looking at the alarm
clock. “It’s 6:30!” I’d dream to myself. And then I’d add, involuntarily, “….And Lizzie
still has Cancer!” It was almost like I had to remind myself that this wasn’t some
gruesome nightmare from which I was now awakening but the real deal. Your brain has a
way of talking to you whether you choose to listen to it or not. My advice is pay attention
to it.

The school of nursing at the University of Texas at Austin studied the effects of patient
Pain, Fatigue on the health of Caregivers and found:

“Conclusions: Patients with cancer experience severe levels of pain and fatigue.
Caregivers report severe levels of sleep problems and depression. Possible relationships
exist between patient symptoms and caregiver outcomes…”

Unless you are Superman or Superwoman, and we know only Kryptonite knocks them
down, you need to be aware of the immediate toll stress is taking out of you, so you can
last the whole race. This is NOT going to be a sprint, it’s a marathon.

The website “ familydoctor.org” has an excellent article that covers much of this topic:
“Being a caregiver takes a lot out of you — physically and emotionally. It’s important to
your health not to ignore your own needs while you care for someone else. The following
are some things you can do to make sure you stay as healthy as possible during your
loved one’s illness:

Make wellness a priority. You may feel like you have to “do it all,” regardless of the toll it takes on you.
However, one of the most important things you can do for your loved one is to take care of yourself by
doing the following:

        Visit your doctor for regular check-ups.
        Eat a balanced diet. This may be easier than you think because you may be sharing meals with
         your loved one, who will also need to eat well.
        Get plenty of rest. If you’re short on sleep, take naps when your loved one does.
        Get some exercise. Thirty to 60 minutes of exercise 4 to 6 times a week can give you more energy,
         reduce stress and lift your mood.
        Do relaxation exercises—such as deep breathing or meditating—to reduce stress.
        Take a break from care giving. If you take some time for yourself, you’ll be better able to take
         care of your loved one.

Let me pause and ask you to dwell on that last point “Take a break”. Force yourself to do this on a
regular basis. It needn’t be long; it just needs to be void of Cancer talk, exposure, stress, etc. Play a
round of golf! Get your nails done! Something!
                                                                                                            14

Stay organized. Caregiving is often a full-time job, but it may be done on top of your other
responsibilities, such as working or taking care of children. Make a schedule with your family. This will
help all of you stay organized and will help you manage the demands on your time. Don’t forget to
schedule time for things you enjoy, such as seeing friends, playing cards or going to the movies.

Create a support team. Plan for times when you’ll need help by making a list of people who are willing to
help. Family members, friends and respite care workers can give you a break or help out when you can’t be
there. On your list, include their phone numbers, the times they are available and the tasks they feel most
comfortable doing. Keep a copy of the list with you at all times in case you’re away from home when you
need to ask someone for help.

Set boundaries. Accept that there is a limit to what you can do as a caregiver. Recognize when you feel
overwhelmed, and ask for help in caring for your loved one.

Is it normal to have so many different feelings about being a caregiver?

Caring for a loved one who is seriously ill is never easy. At times you may feel
scared, angry, sad or lonely. You may also feel guilty. All of these feelings are
normal, but you must learn to tell them apart from the signs of depression and
stress-overload. These signs are listed in the box below. Call your doctor if you
notice any of these signs. He or she can help.

    Signs of Stress-Overload

            Excessive anger towards the person you care for, your family or yourself
            Social withdrawal
            Anxiety
            Extreme tiredness
            Sleep problems (sleeping too much or not enough)
            Irritability
            Health problems (catching every “bug” that goes around)

    Signs of Depression

            No interest or pleasure in things you enjoy
            Feeling sad or numb
            Crying easily or for no reason
            Feeling slowed down or feeling restless and irritable
            Feeling worthless or guilty
            Change in appetite; unintended change in weight
            Trouble recalling things, concentrating or making decisions
            Headaches, backaches or digestive problems
            Sleep problems (sleeping too much or not enough)
            Thoughts about death or suicide




How can I cope with my emotions?
                                                                                                             15

Talk to your loved one and your family. You may feel like you shouldn’t burden people with your
feelings because you’re not the one who is sick. However, talking about the illness and how you feel can
help relieve stress. If your loved one is unable to participate, be sure to talk about how you are feeling with
other family members or friends who can provide support.

Educate yourself about cancer. Find out all you can about the kind of cancer your loved one has, the
treatment he or she is going through, and its side effects. Being informed is a good way to regain a sense of
control. Your loved one’s doctor, support groups, the Internet and libraries are good resources for more
information.

Join a support group. Support groups give you the opportunity to share your feelings and experiences
with people who are going through similar situations. Your doctor can suggest ways to find a support
group, or you can contact the American Cancer Society or the National Cancer Institute (see information
under “Other Organizations”).

Seek counseling. Sometimes it’s helpful to talk with a counselor about how you’re feeling. This is not sign
of weakness. Recognizing that you need help takes a lot of strength and courage. Talk to your doctor. He or
she can help you or refer you to a doctor or therapist who specializes in counseling.”

Like me, you probably just thought after reading this part…..”Yeah! Right! But not me!” Just remember
when you see someone on the street and you start to answer the question “How’s Lizzie doing, but the
words freeze in your throat for an instant, come back and read this one again.




                                                  Summary

              1.   Focus on your own health
              2.   Stay or get organized
              3.   Create a support team and set boundaries for yourself
              4.   Know the signs of stress overload or depression
              5.   Take action either through a support group or counseling if needed
                                                                                                           16

                                                 Chapter 6

                                                   Money!

Part one: Insurance

You’ve paid all those insurance premiums religiously to We-luv-ya Insurance Co. Whew! Thank God!
After paying our deductible amount we should be out of the woods.

 When call to get a case worker, you may find out that We-luv-ya Insurance has hired “Count-the beans
Co” to process their claims. “We-look-at-docs” hired by “Count-the beans Co” starts sending you forms to
sign, authorizing them to verify every bill before Count-the beans Co pays the bill. No signature from you,
No Payment by them. The only one smiling is the Post Office Dept. thankful for the extra revenue, but
your mailman doesn’t share their excitement. His load has increased daily by about a pound and a half.
Know this right up front; Insurance companies are very slow to pay your vendors.

Now that you’ve at least learned conversational medical speak, you embark on insurance speak. All those
definitions at the beginning of your policy, that you really didn’t pay attention to when the booklet came in,
are the basis of insurance speak. One of the very first pieces of correspondence we got from Lizzie’s
insurance company was an example sheet of the possible benefit coverage for an “out of network provider”
something they clearly indicated that MD Anderson was.

With no cover letter “Count the beans” sent an example sheet that went something like this: We will pay
80% of the expenses for “out of network” facilities up to the max $8,000,000. However, in their example, if
they bill you $10,000 and “we-luv-ya” determines that it should be $2,000, they will send you 80% of
$2,000 or $1,600.

IN OTHER WORDS YOU MAY HAVE TO PAY 84% OF THE BILL IF YOU STAY AT MD
ANDERSON!!!!! WAS THE IMPLIED MESSAGE.

In fact they paid 100% after the deductible so don’t panic when this type of letter arrives. More
importantly, don’t make medical decisions based on this type of info.

On the first day at MD Anderson, we first met the business representative who inquired about Lizzie’s
coverage. We told her that she probably met her deductible from the thoracic surgery used to get the biopsy
and the corresponding hospital stay. She smiled, and said we need $10,000. Who will be responsible for
further charges? Will that be check or Credit card? Fortunately, we were prepared and the check didn’t
bounce.

Rule # 1. Stay calm. You probably have more time than you think.

An excellent resource to eliminate all this confusion is a company called Claims Security of America, PO
Box 23863, Jacksonville , FL 32241 800-400-4066. The charge a nominal fee and will take every piece of
paper the insurance company sends you, verifies that it is correct, appeals automatically any disputed
reimbursement, and tells you exactly what you must pay and what you needn’t pay. They will even go back
through a year’s worth of bills and charge 1/3 of any money they can recover for you. If Insurance speak is
neither your desire to pursue and you’d rather focus on the patient in the early stages, this is money well
spent.

There are inexpensive services that will do the insurance thing for you. It might be
helpful and worth the money in the beginning to hire them.

Part 2: I don’t have insurance or the money
                                                                                                                  17

What about those of you who don’t carry a $10,000 balance in your checkbook every day?

There is a corollary to rule #1 that applies here. There is more money available than you think. Don’t
assume you can’t afford the appropriate treatment center.

 When you make arrangements for treatment, if you resources are limited, you will find there is help and
assistance in many areas. Rather than take up a lot of space here let me recommend the website:
http://www.netofcare.org/content/specific_illnesses/cancer.asp#resources They list every organization,
how to contact them, websites, etc. There are public governmental resources (probably too cumbersome
initially), private foundations, specific to your illness grants, clinical trials, and so forth.

My point here is DON’T FEEL LIKE YOU HAVE TO EXCLUDE ANY TREATMENT BECAUSE
YOU DON’T HAVE THE MONEY!

The Patient Advocate Foundation is a great web source for funding supplements
and grants. Many hospitals have there own resources for patients in need. Ask!



    For example: the mission statement for The Patient Advocate Foundation states:

    “Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through
    effective mediation assuring access to care, maintenance of employment and preservation of their financial
                                                     stability.”

Their website is www.patientadvocate.org

You’ll have to look for it, but help is out there. Most states have some form of assistance in this situation.

Travel and housing:

In addition, we could have arranged for a free flight to MD Anderson in Houston had we called:

Angel Flight America
http://www.angelflightamerica.
org
P.O. Box 17467
Memphis, TN 38187-0467
877-858-7788


We did fly home, just ahead of the hurricane, with Angel flight and all I can say is no organization is more
appropriately named. These pilots volunteer at their own expense and time, to shuttle needy patients all
over the country.

Angel flight is a great resource for medical transportation. Call them first.

Prescriptions:

In addition, you will find that Chemo therapy involves multiple, very expensive drugs. The Partnership
for Prescription Assistance (PPA) can possibly bring you free or small cost prescription coverage. It is a
clearing house type website that can direct you to all the resources and programs available by state, and by
drug. Some programs will get you discounts, some will be free. Most you can join right on the internet.
                                                                                                           18

Many don’t care either about income levels or insurance coverage. YOU NEED TO LOOK ON THIS
WEBSITE EARLY IN THE PROCESS!

There is something for everyone at this site so get there early and spend some time there. This is the
program Montel Williams is the spokesperson for ON TV and it is very well done.

Spend some time on the Partnership for Prescription Assistance website.

The little things add up.

For example, daily parking gets very after a while for the caregiver. Groups like the
National Lymphoma Society have programs where they will subsidize up to $150
annually in parking, hotel, and transportation costs. Keep receipts. In addition, MD
Anderson (and many other locations) has low cost housing or Apartments available for
families taking long term treatment. In our case a very fine Baptist affiliated group made
a one room apartment available for $30 per day on a weekly basis. It was completely
furnished and designed for Cancer patients. When you are looking at a possible 6 month
stay, where the cheapest hotel is $55 to $60 per day, this was terrific. There even was an
hourly shuttle to and from the hospital. Most hospitals have some form of patient
advocate or social worker who can advise you of the services available.

It took us three months to find out that the only ward in our hospital that stamped for free
parking was our isolation ward. Duh! I can understand they were focused on saving my
daughter’s life so I cut them some slack for not revealing the parking stamp to us. Just
remember “The little things add up so ask.”

Summary

There are inexpensive services that will do the insurance thing for you. It might be
helpful and worth the money in the beginning to hire them.

The Patient Advocate Foundation is a great web source for funding supplements
and grants. Many hospitals have there own resources for patients in need. Ask!

Angel flight is a great resource for medical transportation. Call them first.

Spend some time on the Partnership for Prescription Assistance website.



                                                  Chapter 7

       Disability Government Style or things you wanted to know about the Social Security system

                                           but were afraid to ask!

First let me say that there are many competent, hard working people at SSA trying very hard to bring the
intended benefits of social security to the people who need them. When you find them
                                                                                                              19

A. tell them you appreciate them (they take a lot of Crap) and

B. try to send their boss a complimentary email if they gave you good service (and many will).

Now for the rest, “the road to hell is paved with good intentions” is the first thought that comes to mind.
No, that’s too harsh.

 Maybe, “I don’t know why they call it common sense, when you find it so infrequently” is a better
headline.

Ok, enough venting, now down to the particulars. The fact of the matter is that there are other costs besides
Doctors, Hospitals, and Drugs incurred by most families. Those are the things hopefully covered by various
medical Insurances. Cancer tends to have a debilitating and longer effect on not only the patient, but also
the Caregiver, financially.

 In the case of the patient, things like fatigue from your chemo and memory loss caused by “chemo brain”
can last much longer than you expect and seriously impair your ability to work “effectively” for much
longer than you can anticipate. In addition, if the caregiver is the primary support of the family, unexpected
childcare costs, house cleaning costs, and lost hours at work because of the demands of your patient can
take a real financial toll on the family budget. These hidden costs add up quickly, and justify your true
disability status. You should not feel at all embarrassed to pursue it if you are qualified.

 If you kept the notebook journal we discussed earlier and got business cards from everyone, you will
probably want to kiss me on the lips in thanksgiving when you look at the SSI website.




Rule #1. Start at the SSI website for Disability www.ssa.gov

Right away you see a very busy first page that indicates the myriad of things SSI is into. In the middle of
the page you will see “Disability and SSI” “Do you qualify?” “Apply for benefits.”

 You qualify so go right to “Apply”. I say that because there is no financial need level or, said another way,
you aren’t disqualified if you make too much money. Your income levels may effect how much you will
receive, but if you have Cancer, you’re disabled! Next they will determine if you are an adult or child. Then
they will start the forms interview process.

Rule #2. Be prepared before starting the clock.

 At some point you will start a clock running and you will have something like 60 days to complete this
application process so do the preparation first before you start the clock.

Sixty days sounds like a lot of time, but when some worker says I’ll call and set up an appointment for you
and never does, or I’ll just mail that out to you, and it doesn’t arrive, time slips away much faster. So do as
much prep as you can ahead of time, before you start the clock.

Rule # 3. Make copies of the forms you fill out on the internet.

After you fill in each section of the survey on the internet, they summarize all your answers. All you need
to print are these summaries and not each page of the survey. Bring the copies of the surveys with you
when you go for an appointment. Don’t assume that your info is in the interviewer’s computer just because
you filled out the form. Repetition is the food of life at government agencies.
                                                                                                               20

 Also know this. Once you send the form to the SSA from your computer, it’s GONE. You can’t access it
again and you probably started the clock so make sure it’s completed fully and you are prepared to begin
the application process before you send it.

Rule #4. Get the full names and extension #’s of the competent people you speak to.

I’ve found that the Help line 800 number on the website has mostly capable people answering the phones.
Of necessity, they will refer you to your local office. But if you get a run around there, go back to the 800 #
to complain politely. They get things done. Ask the full names of the incompetents as well as competent
people you are dealing with, it will immensely help you in the process.

Rule #5. Bring everyone’s (Mom, Dad, and Kids) SS #, copy of Driver’s license of
patient, and possibly birth certificates of kids. Also bring the journal you are
keeping and the internet form copies.

Lizzie is in the isolation ward at the hospital fighting to stay alive and the voice on the other end of the
phone says “When can she come in?” …..for the third time…….after I’ve explained it twice to
them…….and two other people before them…….. You begin to wonder about just how “Social” do you
have to be with the “Social” security people.

So you give up and just go over to the SSA office to make the appointment for your real second
appointment, this is your second mistake

You are met at the door by a burly guard, who barks:

“First time here?”

“Yes.”

“Take a Number!”

But this isn’t the bakery. There is a computer screen, slightly confusing. You get the drift, and then find a
seat and sit down. Otherwise burly guard will insist that you sit down.

 Next you look at your ticket and it says you are “C 24”. With that, the voice over the intercom announces
“B 85” and you wonder “How many B’s are there?” Next they call “C 22” and you realize the system is not
designed for you to understand the embedded logic. Next, after a half hour wait, when “C25” is announced,
it really confuses you. In panic you politely go to the nearest window and ask “Did you skip me? I’m C24!”

The look of disdain tells you that you should have stayed in your seat and a cold “NO! I didn’t!” comes
through the window.

The voice is really saying, “I know how this works and you obviously don’t.”

They reply “Please just wait your turn.”

When you turn around and a room full of seated veteran patrons have that ”Rookie” look on their face, you
dutifully attempt to get back to your seat. But the burly security guard has now put another scared patron in
your seat so you painfully look for a corner to hide in. When you strike up a conversation with a nice
veteran they tell you they are trying to get their maiden name back and you think “Gee, I’m trying to help
my daughter keep her house from being foreclosed and you’re changing your name.” Then their number
                                                                                                                 21

gets called and I’m in for a long wait. Such is life at the SSA for the first time. Lesson learned; get a real
appointment before you go to the SSA office. Don’t just show up.

You also should know three important facts:

    1.   Nothing will happen on disability, as far as payments, for 6 months. Why? I guess you aren’t
         disabled in the eyes of the government until you’ve had Cancer for six months.
    2.   When you are approved for disability, your children under 18 may also qualify for some benefits.
         If you have a really good person as your interviewer, you might get everything filed at once; hence
         bring everyone’s identification the first time you go. Carpe diem.
    3.   Use direct deposit; it’s safer than having the check in your mailbox.




Finally, if you waited longer than six months to file, don’t worry they will go back and give you what you
were entitled to from the six month anniversary.

                                                   Summary

Rule #1. Start at the SSI website for Disability www.ssa.gov

Rule #2. Be prepared before starting the clock.

Rule # 3. Make copies of the forms you fill out on the internet.

Rule #4. Get the full names and extension #’s of the competent people you speak to.

Rule #5. Bring everyone’s (Mom, Dad, and Kids) SS #, copy of Driver’s license of
patient, and possibly birth certificates of kids. Also bring the journal you are
keeping and the internet form copies.



                                                   Chapter 8

                                                      Food

Be careful but open-minded when it comes to the topic of food for your patient. First recognize that there is
a whole political agenda out there when it comes to proper diets without considering cancer. I’m not
qualified to comment on what’s right or wrong in this arena, but I will tell you that too much of what I saw
didn’t bother to disclose their biases when presenting “their perfect cancer diet tips.”

With that said, I was particularly impressed with the organization and common sense found in Holly Clegg
& Dr. Gerald Miletello’s book “Eating well through Cancer”. First their index of recipes was indexed by
symptom. In other words if you were neutropenic, you wouldn’t want their “Banana Pudding Trifle” recipe
but you might eat their “Bread Pudding Florentine”. Each recipe is charted for the following categories:
Day of Chemo, Neutropenia, Diarrhea, Constipation, Sore Mouth, and post treatment Healthy eating. Some
don’ts will surprise you.

Here is a sample of the wisdom this book contains. “Even the smell of cooking can upset your stomach at
times. Patients tell me that often they have their food prepared in an outside kitchen to avoid the aroma.
                                                                                                              22

Having a surprise will sometimes entice you to eat……Try to keep it simple and inviting. Eating with a
friend or family can also be very helpful. It is no fun to eat alone.”

When Lizzie came back to Atlanta, she weighed about 95 pounds and looked like she had just left a POW
camp somewhere. Her doctor even discussed the need for a feeding tube at one point. I can’t emphasize the
importance of proper diet and appealing to the patient’s needs in this area.

Also, while we have no first hand experience in this area, many people have recommended herbal
supplements to their diet like Noni. They say it diminishes the side effects of chemo, and increases the
recovery time from fatigue. I mention this to expose you to the idea rather than to endorse it, because as I
said, we didn’t hear about it until after Lizzie was finished with her chemo.

There are other simple tips to note like some of the liquid medicines you take regularly are awful tasting.
Try using a straw. It bypasses most of your mouth and minimizes the awfulness.




                                                   Epilogue




I had the good fortune of watching the Special Olympics after the Atlanta event ended. One particular race
really stayed with me. It was the 220 sprint for blind runners. The race started at the top of the final turn on
the track and finished at the end of the long straight away. How, you may ask, did these blind runners
navigate the turn and finish with times only seconds off of the Olympic records?

The answer is they were tethered to a partner who ran stride for stride next to them. Think of it. This
partner: 1.had to be nearly a world class runner, 2. had to train for years, 3. had to do everything in reverse
of the blind runner, 4. could not finish ahead of their partner or they would be disqualified, and 5. got no
medal or recognition when it was over.

This is the stuff that caregivers are made of, and I’m proud of each and every one of you.

If you have any further tips or comments to add to this humble endeavor please feel free to send them to
postmike@bellsouth.net

				
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