Introduction by ARDS Support Center: Beth battled
her way through ARDS
twice; when doing so once is far more than enough for anyone.
Each individual who battles for survival against ARDS travels a path that may run a gamut
of medical, financial, interpersonal, familial, psychological, and emotional struggles
that "in the eyes of a survivor" may seem quite long, difficult, and lonely at
times, even if it is otherwise relatively quick in a temporal (time length) sense. Not
every individual who is hit by ARDS suffers through the full range of aspects expressed in
Beth's words, but her words are invaluable and important guideposts for family members,
friends, and others providing care and support to an ARDS patient and survivor. Steven R.
Holets RRT, CCRA, one of our medical advisors, aptly stated in replying to an inquiry on
surviving and recovering from ARDS:
|As with many conditions ARDS can
present itself with different levels of severity. Length of time on the ventilator, the
level of ventilator support required (concentration of oxygen, pressure levels required),
and any complications (pneumothorax requiring chest tubes, infections etc.) are all
factors that can lengthen the time of recovery. [The individual]
may have developed
pulmonary fibrosis-a condition were the lungs become stiff making it very hard to breath.
This may be irreversible or take a long time to resolve. If [the individual] was given
steroids and paralytics, which is sometimes necessary in order to ventilate the patient,
her muscles may have atrophied (wasted away), again rehabilitation and recovery may take a
long time. These are but a few of the possibilities and there are many other contributing
factors. Every victim of this disorder is affected differently, the degree of severity and
period of recovery from ARDS varies on an individual basis.
"I am alive. I have twice survived the battle of ARDS and other
health problems which tried to kill me. I am here because of God, the prayers of family,
friends, their friends, everybody's churches, prayer circles, strangers...everybody was
praying for me, and I am glad to say many still do. I had a near death experience, a
vision, when I stopped breathing on my own and flat lined. There is no other explanation
for my being alive now. Currently, I am home and living alone and out of the woods as far
as many are concerned. Not true. I still have a long way to go and need all the prayers I
can get. I also still need some of the suggestions I list below. But I rarely get them now
and have learned to do without. I can ask for only so much for so long.
Others have written about what to do with a patient, your loved one,
in the hospital: talk to me; don't raise your voice, I'm not deaf, just comatose. Touch
me, stroke my arms and forehead, brush my hair with your hand or a comb/brush, hold my
hands, and turn my pillow. Play music in the room or by using earphones (order
personalized tapes from Greg Fleckenstein!). Comfort me if I appear agitated, I may be
having horrible nightmares and hallucinations. I am probably in restraints so I won't pull
out the many tubes and other equipment. I don't like being restricted and I will fight it.
You can understand that. I don't realize what I am doing and saying. I am not responsible
for my actions and words. Tell me the news of the day: for me this meant, "Hey, Mom,
today is your 53rd birthday." "It's Christmas Eve and we are going to the
mall," "Happy New Millennium, my daughter." I was in a coma this entire
time and don't remember this, but I do remember waking up scared and relieved to see a
family member there. I needed to be reassured. I needed to be comforted. These same truths
hold when I went to the nursing home and after I got home. I still need these things. Just
because I am not quite so helpless, I still need your undivided attention when you are
When you are not with me, take good care of yourself. Get plenty of
rest and eat regularly
not just coffee and a bun. Call friends. Unload on others, not
on me. Talk to anyone who will listen. You are going through so much yourself while
putting me first. Don't keep your feelings to yourself. Share them with other families in
the waiting room if they are the only people available to you. You need your strength to
take care of me. I need you healthy and patient with me.
ASK QUESTIONS of the medical/nursing staff and therapists! I cannot
stress this enough. Ask until you get answers, which satisfy you, which you can
understand. You are a family member and deserve to be treated humanely and intelligently.
You can't possibly understand all the medical jargon and you don't need to. Get these
things explained to you. Don't let someone put you off or keep you away from your loved
one. Contact with and information about your loved one is essential.
The first time I got ARDS, I was petrified because I went in for
rectal surgery and awoke on a ventilator and with a totally unexpected colostomy. I was
immensely swollen due to the sepsis. NOBODY was telling me anything!! I got angry.
Finally, pointing to Dad's pocket, he pulled out the pen and gave me some paper. The note
I wrote said, "STROKE?" They assured me not. Even though they continually asked
the physicians to tell me about my condition, the ventilator and colostomy, my family
wound up responsible for giving me the news. My handwriting, for the most part was
illegible, but my family was supposed to guess until they got it right.
When I tried to print, the scribble might be more legible. Remind me
to do that. Tell me to use big letters and take my time. I need to be able to know I can
communicate and be understood. That is sooo important. I was scared. I couldn't talk.
After experiencing ARDS, I don't have much breath and find it hard
to talk. Never in my wildest dreams would this have ever crossed my mind unless I had
lived it. Don't make me talk too much; explain this to visitors before they come into the
room. When the phone rings, ask me if I am up to talking. Don't just give me the phone.
My dreams were so real, I asked my family if certain things had
really happened. I can still picture those dreams/nightmares more clearly than I can
remember real things that happened.
The second time I had ARDS, I had learned from the first time: get a
recliner! Insist on one in the hospital room and have one at home. I would get really
antsy in bed, even on that airbed they had me on with all its positions. I could get in
the recliner and put it in different positions as needed. I could eat in the recliner a
lot better than in bed, once I could feed myself. As a matter of fact, I just remembered,
I got the recliner before I could feed myself. It helped me to be able to feed myself
faster because I am sitting up, can see the food at a lower level, can manipulate it to my
mouth which I couldn't do in the bed, even when the bed was raised to a sitting position.
This sounds gross, but when my family wasn't there at mealtime, and I had to feed myself,
I would push some food on a small plate, hold the plate to my mouth and guide it in. (You
get the picture!)
Finally I am able to go home! The things I needed in the hospital, I
still need now: your love, attention, assurance, visible caring and physical touch.
Encourage me at whatever I attempt. Yes, I want you to be a saint! LOL :-)
Remember, I still need for you to take care of yourself so you can
tend to me. Get others to help and relieve you. Don't try to be with me all the time.
Others can be called to sit with me while you have some time to yourself.
Please have the house clean when I come home and things in their
proper place. Be prepared to attend to my every need. Don't snicker, I really do have a
lot of needs and your patience is essential. If possible, before I get home, try to get
'handicapped' things ready for me. Install any things I might need even if the disability
is temporary. We don't know how long I will need these things and they won't be in the
way, or can be put away, when I no longer need them. I may need:
Non-skid strips in the bottom of the tub, put them in the middle and
back of the tub. Stand in it yourself to see where you stand when you shower.
A grab bar that is not slick, but scored.
A place I can put my soap, shampoo, etc. which I can reach. Before I
went into the hospital I could reach above my head and had shelves hanging from a very
high showerhead. I can't reach those now. A pole with rubber ends can be easily installed
to hold bathing items on lower shelves. A showerhead, which is attached to a flexible
head, is really nice.
I may need a plastic bath chair with holes if I am unable to stand
long enough to shower and, I certainly, cannot get into and up from the bottom of a tub
for a bath.
Non-skid bath mat on the floor. Offer to be there, or very close by,
for me when I bathe in case I may need you. Offer to wash my back, my hair, my feet - they
are hard, if not impossible to reach, even when I bend my knees upward.
I find it hard to bend down and need a raised seat on the toilet or
a three-in-one bedside commode.
I probably cannot reach, much less cut, my toenails nor have the
control to do my fingernails. (Just like I don't have the control of my hands enough to
write in my own penmanship yet, open a bag of potato chips, colostomy supplies or anything
that requires fine motor coordination. There just isn't any strength in my fingers). A
podiatrist will cut nails in the hospital, nursing home or home. A manicurist will, if
allowed by the facility (pressure them!), come as well, and less expensively. I like to be
pampered and that is the feeling I get from the manicurist who can also give a pedicure,
massage, lotion, polish and all. To me, this is a no brainer, which very few people ever
Mobilization is a real toughie for women my age (53). Aw, shucks, it
is probably tough for everybody who has been on his or her back for weeks. While
immobilized, a person loses up to 3% of our muscle mass per day!
It is not so much as matter of learning to walk again as it is the
willingness to work very hard at exercising those muscles and using the walker to
practice. I divide my exercises into: lying in bed, sitting in bed, and standing - using
the walker for support while exercising. Depending upon the weather, I take my walker out
on the patio to do my standing exercises. It is much more interesting and my endurance is
better when I can feel the sun on me.
Now for some hints on what I really want when I get home. (I didn't
get all of this, mind you. But I can share my dreams to help others.)
***Try to become a mind reader and anticipate my needs. My healthy
functioning and cognitive abilities are slow in returning, much to my dismay.
***Watch my water glass, which needs to be beside me all the time.
My medicine makes me thirsty and it is very important to get enough water. Make sure I
always have fresh water.
***I need my medications on time and may not be able to handle the
simplest of memory tasks like this one. Anticipate, in order to make it easier on me while
I gradually assume responsibility for things like this.
***Encourage me to be responsible for tasks as I become able. Don't
berate me when I falter. I will be hard enough on myself and it is really more frustrating
to me than it is to you, believe it or not. Praise me truthfully when I accomplish any
milestone, like adding five more leg lifts to my routine. That might not be a big thing to
you, but it is to me and praise is encouraging me to do even better.
***If I tell you something new I have done, it is important to me. I
am asking for your praise and encouragement.
***I don't watch TV very much, but it was handy to have it where I
could use it with a remote control.
***About reading, concentration was, and still is, really hard for
me. I have tried novels and just can't get into them, can't remember the story line or the
characters. I do better with magazines, short stories, "Chicken Soup" style
books which are humorous and feel good. I don't want anything heavy or sad. I
may be (well I am anyway, and others might be too) unable to read by myself so I might ask
you to read to me
the newspaper, a magazine story or two, something from a novel, a
short story, poems, stories, letters. You might not be tickled to do this, but I
might be persistent in asking. I hope you realize how important it is. It
might relax me, and makes me FEEL like someone cares enough that they would take the time
to do this for me. It can be uplifting and heart warming when someone takes
the time to read or do something for you that you cant do for yourself at the time.
I never could have realized how much this would have meant to me when someone would
just read to me.
***Ask me what I need. It is very hard to ask someone to do
something for me when I am accustomed to doing for everybody else. Pride. "Mom, do
you want to have your sheets changed.... flowers watered.... something special from the
***An absolutely essential thing for me is to be able to see
outside. I have bird feeders. The birds are the most relaxing part of my day. I stop
whatever I am doing to watch them. I have some plants and flowers.
***You may want to get some flowers to plant, even some wildflower
seeds to sow. Not only can I watch them grow, but also I can have flowers in the house (if
I am not allergic). You might have to water and tend to the flowers and plants until
I can do it myself, but they are an important part of my day, yes my life too.
***Contact my friends, church, clubs to provide meals, grocery
shopping, run errands, drive to doctors' appointments. You aren't expected to do
***Do what you can to keep my spirits up and my faith sound. Does my
church offer to bring communion to the house? What can my church, synagogue, temple, etc.
bring to the home?
***Ask me what will raise my spirits, a home video, a new gown,
pictures of and from my children/grandchildren/nieces/nephews, etc..
***I forget things. A lot. You may remind me, "I just told you
that 10 minutes before", but do it lovingly. When I ask you about something I should
remember, but don't, just tell me the answer. Please don't try to play guessing games with
me. This is not funny in any way. Provide stimulation to help me with this. I like
puzzles: crossword, jigsaw, cryptoquotes, anything! Crafts, embroidery, cross-stitch,
knitting, painting, whatever.
***Keep in touch with others who have or are going through similar
circumstances. Communicate with others in the ARDS Support Center network. Ask me if I
would like to "e-talk" with someone who has been through what I have endured.
There is an excellent chance I may have some questions or just want to talk to someone
with experience. I may need your encouragement and assistance to do this.
It may, or may not, take me a long time to get better; perhaps much
longer than either you or I expect or want. Baby steps. One day at a time. Patience.
Be grateful for what I have. Look back regularly to see progress.
Sometimes day-by-day progress is hard to see.
Celebrate! Smile! I am alive. I have suffered and overcome the
deadly ARDS as well as fighting my other health battles. I couldn't have done it without
you. Celebrate and remind me to do the same.
Beth Joyner North Carolina
Postscript: Often, the simplest thing that someone could do
and might not think much about doing is just the thing to brighten up the day of someone
who is recovering from ARDS. Walk not behind the person struggling to survive and recover
from ARDS looking to see how far the survivor might be able to go, but instead in front of
him or her coaxing and encouraging him or her forward. When needed, walk by their side to
guide and assist. Each year, countless thousands of individuals, from doctors, nurses,
respiratory and physical therapists, and other medical personnel, to family members and
friends, provide a cadre of caregivers to the thousands and thousands of individuals who
are hit with ARDS. Beth's words-her pearls of wisdom drawn from experience-speak to the
heart and soul of this cadre of caregivers, who give so much of themselves throughout the
United States and the worldto whom a deep abiding round of thanks and gratitude is
well deserved in ways beyond counting.