We all feel so helpless. Is there anything
family members and friends may do to help? Yes!
As you now know the mortality rate for ARDS is believed to be
40-60%. This is a very serious syndrome but people can and do survive ARDS. ARDS is
different in every case. Some are on the ventilator and in the drug induced coma for just
days and in other cases it can be months.
While the following general suggestions are made, you should always
ensure to discuss and obtain the approval of the doctors and medical personnel before
undertaking to do anything of a physical nature or bringing anything into the ICU or room
of an individual battling ARDS. There may be significantly valid medical reasons why some
or all of what is suggested may be determined to be limited or curtailed by the doctors or
There are things that family members can do now. Even though your
loved one is on a vent, in the drug induced coma, and probably on paralytic drugs on some
level they are aware of people and events around them. It may not look like it but they
are. It is so important to talk to your loved one as if she or he heard every word you
say. Give them all the reasons why they must live and tell them how much they are loved.
Talk, talk, talk. (Under some circumstances the medical personnel may ask that you keep
talking to a minimum. There may be medical reasons for this.) Play soothing music. Check
with the doctors and nurses before bringing in things you know they love the smell of, hot
apple pie, fresh baked bread, laundry dried in the sun, favorite perfume/cologne.... Touch
them, rub lotion on their bodies. Bring in some high-topped shoes (a size too big) and put
these on your loved ones feet for a few hours a day. This will help prevent foot-drop. Put
pictures of family, loved ones and friends on the walls. I recently met a woman who is an
ARDS survivor and she told me that in her dreams she kept seeing 2 of her nieces. They
weren't a part of the dreams they were just there. When she was aware of her surroundings
she noticed that the two largest pictures on her walls were of these two nieces.
It is so important that you do all you can to stimulate your loved
ones senses. Many ARDS survivors recall very vivid dreams while in the drug induced coma.
By stimulating the senses the dreams will be based on reality, and this is what you want.
Some of the dreams can be calming and some frightening. Talk to your loved one about fun
things you did together, laugh with them about silly things you did. Be sure to have the
nurses explain what they are doing and why when they clean the vent. This can be very
frightening to the patient. The more the nurses tell your loved one what they are doing
and why the better this is for the patient.
The most important thing is to always remain positive in their
presence. Leave your fears and your worries at the door. Do not allow anything negative
while in the room. Conduct all consults with the doctors/nurses away from the hospital
room. Just as positive things are felt and sensed - so are the negative things. Keep your
faith and your hope strong. Make sure that everybody is encouraging and hopeful while with
your loved one.
Start a journal. ARDS survivors have a great need to know every
detail of what happened when they were "asleep". All family members can
contribute to this journal.
Prepare yourselves for setbacks. This is common with ARDS. It is a
roller coaster ride. You may have a good day and then the next is not too good. This is
normal. Concentrate on the steps taken forward and view the steps backwards as hurdles
that can be overcome.
Also, even if you have been permitted to do something, if you are
told to discontinue it by the doctors or medical personnel then you should immediately do
so even if it seems illogical to you. Perhaps for some reason your loved one is becoming
agitated or is showing signs of distress, and the doctors or medical personnel might wish
to calm your loved one down and try to bring the medical situation back under control. Not
everything will work on each individual, so what helps one individual recover might hinder
the recovery of another. There are significant indicia in tests and on the machines (vital
signs and the like) for the doctors and the medical personnel to measure and evaluate what
is occurring, so for your loved one's sake ensure to obey the directions of the doctors
and medical personnel even if it seems to be or may be inconsistent day to day, or even
from shift to shift.
Make sure that you get needed rest and eat right. Your loved one
needs all your strength and energy right now and you cannot give this if you are totally