#1 Guest_Wheezer_*

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22 November 2006 - 07:00 PM

Dear Family and Friends,

Our lives may never be quite the same, A.D.
(after diagnosis). In a perfect world, I wouldn't
have COPD. But we can both try to seek more joy,
derive more pleasure, from what we are fortunate
enough to have... one another. Let's make the most of our time.

In a perfect world, you wouldn't have to wonder
how I was feeling, and wonder what you might be
able to do to help me. You wouldn't find yourself
on the receiving end of my reactions to the
episodic depression spells to which I am prone.
Nor would you have to puzzle over the fact that I
seem to have good days, and then unexplainably, so many bad days.

You must be terribly disturbed by my shortness of
breath, and by the fatigue that nibbles at me all
day, every day. And I can guess that you are as
upset and embarrassed as I am by the fits of
coughing that sometimes seize me, especially out in public.

You know that the compromises to my lifestyle
that are demanded of me are upsetting. It's hard
for me to ask for help, when I find that I can no
longer do something on my own. It hurts my pride,
and I can see in your eyes that it hurts you, too.

But it isn't a perfect world, is it? I do have
this disease, and so far there is no cure for it.
I must learn to cope with it. We all must. So,
even though the world is less than perfect,
particularly so since my diagnosis with chronic
lung disease, these issues do exist. I want to
find a way to help you as you try to help me.
That's why I'm writing this letter to you now.
Sometimes it's just easier to write things down
than it is to say them out loud. Especially
things that cause this big lump in my throat, even as I write.

You are my loved and cherished family. And it
seems to me that the Family members are often hit
as hard with the realities of COPD as the
patient. Maybe even harder. It pains me to see
you struggle with solutions for us as we fight
the battle of illness together. I know you want to help.

So here is my fantasy of what our nearly perfect
world can be, in spite of COPD:
Our lives cannot help but be affected by the fact
that I have this disease. But I have learned that
COPD is not a death sentence... nor does it have
to be the end of our quality of life. The better
I become at managing my own illness, the more
effective and happier our time together will be.
Maybe if we establish some suggested ground rules
to get us through the rough patches, we'll adapt
more easily and with less stress on us all.
Here's my list of seven suggestions:

· Suggestion #1 It is important for me to
remain as independent as possible to preserve my
self-esteem. Try not to rush to help me before
you know whether or not I can accomplish a task
on my own. I really want to try; not only to
spare you, but also to help me with my
independence and self esteem, both of which will
erode significantly with every thing that I learn I can't do.

There is a fine line that you, my dear ones, must
walk in balancing between coming to my aid, or
just taking over for me, (which can be
interpreted as enabling me to become a cripple).
This is important for so many reasons, like the
need to keep my body and muscles as conditioned
and toned as is humanly possible under these
circumstances. Like the need that I have to feel
useful, again -- to help guard against a loss of self esteem.

· Suggestion #2: Try to not judge me if I'm
having a bad day. It is possible that a lung
infection could be brewing in my body, and you
may be aware of it sooner than I can be myself.
You know the signs... increased shortness of
breath and coughing up dis-colored sputum.
Perhaps fever, but maybe not. Less energy to
expend on the simple chores of daily living.
Some of the folks in my lung support group have
expressed their frustration when their Family
leaps to the conclusion that we are
hypochondriacs who complain a lot about feeling
bad. I think that this just isn't so; we aren't
constant complainers. The COPDers I've come to
know are a pretty brave lot, all in all. Most of
us who have some form of COPD do not want our
loved ones to see us as "sickly" or making
excuses. As a result, however, many of us hedge
about the problems we are having.

· Suggestion #3: Please help me by
overseeing that I am complying with my doctor's
prescribed treatment plan. I don't expect you to
be a nurse, but I will appreciate it if you
gently remind me to take my afternoon puffs on my
inhalers, or to check to see if I remembered to take my evening pills.
Help me to be a compliant patient by helping with
my oxygen equipment when we go out. It's good to
know that I have a portable filled with enough
supplemental oxygen to get me comfortably through
our schedule. It's also good to have help getting
in and out of the car. And especially helpful to
have an arm to lean on going up stairs, if I need
it. The more comfortable we both are with the
oxygen and equipment that I need, the sooner it
will be accepted and not questioned by the general public.

· Suggestion #4: Help me to stay
socialized. Do not let me become isolated from
friends and other Family members. We COPD folks
do have a tendency to stay at home, rather than
digging down deep for the energy to get up and
out! You can encourage me to accompany you to
lunch, or even to the market. You can inspire me
to go to a movie, or to have guests in for
bridge, scrabble or cribbage. Your encouragement
can make the difference for me---desiring to see
people, and for people to see me!

· Suggestion #5: In this nearly perfect
world, we need to have and show respect for one
another. I promise that I won't talk about you as
if you aren't in the room, if you'll do the same
for me. My feelings are currently worn very close
to the surface; I can hear perfectly well what
you've said to someone about how fast the disease
is progressing, or about how futile our efforts
to fight it may seem. You and I can certainly
discuss these issues between ourselves, and keep them within the Family circle.

· Suggestion #6: Encourage me (but please
don't nag me) about getting my exercises in each
day. Some days it is just so hard to commit to
even 10 minutes of active exercises. If I'm too
sick to do them myself, try to help me with just
some stretching exercises like yoga or T'ai Chi.
These gentle movements can help to keep my body
conditioned, even when I'm suffering from an
exacerbation. And they aren't that taxing of my
strength or energy. You, of course, no matter how
hard you try, can not fully understand how I am
feeling because you don't have my lung disease.
But your encouragement brings me added strength;
your emotional support brings me peace from the trauma of being sick.

· Suggestion #7 Nutrition is an important
part of helping my body with its special needs.
You can help by making sure that I'm eating
right. A diet high in protein will help build up
my immune system and body strength. We can plan
the week's menus together. I pledge to try and
tell you what items seem to taste best to me.

That's it... I'll stop with Lucky #7. I don't
wish to make our lives more difficult with
suggestions and rules. I simply want to express
myself on the subject of how you can help me. I
don't want to sound as though I am whining or
complaining. I am reaching out with all the love
that is in my heart for the help that I know you
want to provide. And if you have your own list of
suggestions, please share them with me.
It is true that our lives may never be quite the
same. But we can work together to preserve and
enhance what we are fortunate enough to have...
one another. Help me to continue to fight on, to
become stable, to endure what I will not let
bring me down. Let's make the most of our time.
Rose Marie

From my heart to yours,

Your Person with COPD,

Reprinted here with permission of Rose Marie.

#2 Guest_eglinton_*

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23 November 2006 - 01:12 PM

Kasey, thank you so much for reproducing your family letter here. I'm rather proud because you are thereby including us here as family as well.
It's a long time since I had a little lump im my throat . You can do that with your eloquenceand honesty.
Kasey, thank you again and may I send you many of the hugs that you lavish on us COPDers.

#3 Guest_Wheezer_*

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23 November 2006 - 02:47 PM

Thank you, Maurice, for the hugs and the kind words. You guys are my family here. Truly.

I wish I could take credit for this letter but, alas, I am not the author of it. Another COPD pal of mine penned this letter and kindly shared with me and then gave permission for me to share it here. Although I will use a lot of this letter myself, I can't take credit for it. But I will pass your comments on to my friend.
Thank you, Maurice, and I love the hugs!!!!

Hugs to you,

#4 Jane M. Martin


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23 November 2006 - 07:45 PM

Thank you, Kasey,
This is a masterpiece and something everyone with COPD should have at hand and share with loved ones. It is so hard for the family and friends to understand and cope with their loved ones with lung disease. This is the handbook for them.
Blessings to you, my friend,
Jane. :)

#5 Dee

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11 September 2007 - 02:00 PM

I have noticed that many people have been reading this letter. It truly is a masterpiece. I remember the first time I read it I was very moved.

It was written by Jo-Von Tucker, a fellow COPD patient. She wrote a wonderful book titled:

Courage and Information for Life with Chronic Obstructive Pulmonary Disease.

It is a handbook for patients, families, and care givers managing COPD.

I have a copy of this book, I was able to purchase it used from a used book dealer on line. I recommend it highly.

Jo-Von Tucker was an amazing person and I will always be grateful for the valuable information she shared in this book.

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