Let's Make the Most of Our Time In an Imperfect World
An Open Letter to Family Members from Your COPD
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
So here is my fantasy of what our nearly perfect world can be, in spite
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
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
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
tendancy 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
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.
From my heart to yours,
Your Person with COPD,
|Jo-Von was one of the early advocates for COPD
patients. Known for her enthusiasm and leadership, she
left a lasting impact on the COPD community and the lives of many
She was the founder and leader of the Cape Cod C.O.P.D. Support
Group which is still active today.
Jo-Von Tucker died Wednesday Dec. 17th 2003 at Cape
Cod Hospital of Chronic Obstructive Pulmonary Disease and diabetic