one survived ARDS but I am having difficulty dealing with some issues.
Is this normal?
Having a loved one in ARDS crisis is a
very emotionally draining experience. The best way to define what you
have been through is that it has been a roller-coaster ride. Every
time you saw an improvement you experienced great joy and relief. But
sometimes these improvements are followed by set backs which cause
intense fear. Your loved one may have been in crisis for days, weeks
and even months. This takes a tremendous emotional toll. You have had
to be strong and hopeful and you have had to live with the fear of
death. Your loved one has survived and your joy is great. But you may
be dealing with feelings of depression and even anger wondering if
your life will ever return to normal.
The memory of seeing the open, alert
eyes, the smile and hearing the first word spoken will be forever
etched in your memory. The recovery stage has started and this process
may take some time. You cannot wait until your loved one
is home and sitting across from you. You want to begin to get back to
But it does not always work this way.
There may be a need for a lot of assistance in the most basic areas of
self-care. During the first weeks you may have had help from a home
health provider but this does not continue forever. In addition to the
demands of your daily life, such as working and caring for children,
you now must provide assistance to your loved one. Friends and other
family members are not around as much and the burden you feel is
heavy. The challenge can be physically and mentally exhausting.
You may find yourself depressed, angry
and feeling as though nobody understands what you have been
through. The focus has been on your loved one and you may not receive
the support that you need.
It is important to realize that you
both have shared a traumatic experience but on different levels. Your
loved one probably has no memory of the days spent in crisis but you
remember the roller-coaster all too well. It is important for both of
you to communicate your feelings with each other. It may be necessary
to receive professional counseling to help you both to understand that
your lives have changed. While the love you feel for each other is
stronger than ever the emotions one goes through in a life/death
situation are very real. Family members as well as ARDS survivors can
experience Post Traumatic Stress Disorder. If your feelings of
depression and anxiety persist it is time to seek counseling to
determine if you are experiencing PTSD. It is a disorder that can
cause brain changes and it does not go away by itself. It may be hard
to realize that you need help but if you are going to regain your
emotional equilibrium you may need treatment.
An experience such as ARDS changes your
lives forever. Your loved ones recovery may be good and you may be
able to get back to a near to normal existence but many times there
are on-going problems and it can be a tremendous struggle to find a
"new normal". It is a wise person who recognizes the need
The following are examples of the
situations described above. The first is a true reaction of the ordeal
experienced by one whose spouse has survived a long but successful
struggle with ARDS. The second is a striking description of the types
of difficulties that can be encountered as families try to cope with
- And welcome to the world of an ARDS
family member. I have, for a long time,
championed the fact that the ARDS family is the forgotten one. All
of the attention is given to the ARDS patient (rightfully so) but
no oneÖNO ONE understands what it is like to watch the person
you love lay in bed, on a ventilator, with needles stuck
everywhere, the monitors clicking off the numbers and not being
able to help. It is truly a nightmare beyond comprehension. And if
you're lucky to have the patient survive and finally come
home...all the attention is given to the survivor (almost
so) and nobody really realizes that the person standing in the
has been impacted beyond belief. True, the survivor has just gone
near-death experience...but so has the family member. Many of us
are blessed to have endured this ordeal and be able to continue to
share our lives with our loved one...and now we are given the
unique opportunity to share our fortunes with others to help them
live through this.
We all have a lot to be thankful for. God has given us the
strength to be able to do this and I hope and pray that the end
result is that the unfortunate families who have to go through
this will have a much easier time because the ARDS Support Center
was able to be there for them and guide their way.
God Bless All.
When I got home, I spent a
lot of time in a wheel chair and was bored sick. I had NO clue as to
all what my wife had been through in all this ARDS mess, and I donít
think she really understood just what I have been through either. This
caused such an emotional turmoil between us it was unbelievable.
Finally one day, after tossing a glass across the room at me (near me,
actually), she sat down and told me that I had fallen into a state of
depression, and I of course thought she was nuts. She had told me that
she knew this, because it had happened to her at one time, and she
knew the signs very well. We made an
appointment to see the "shrink" and it took but one visit
for me to realize just how hard it was on her during my battle. Now
when corresponding with other survivors and their families I stress to
them that I think the whole ARDS process is actually harder on the
loved one than on the patient. The patientís battle comes after the
ARDS roller coaster ride ends and it becomes necessary for all in the
family to adjust to a much different life style.