My loved 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 normal.

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 for help.

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 post-ARDS problems.

  • 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 rightfully
    so) and nobody really realizes that the person standing in the background
    has been impacted beyond belief. True, the survivor has just gone through a
    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.