Through the Eyes of a Survivor

by Beth Joyner

 

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.

 

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"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 with me.

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 consider.

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 can’t 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 store?"

***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 everything yourself!

***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 world—to whom a deep abiding round of thanks and gratitude is well deserved in ways beyond counting.