We (Mary and I) participate in, contribute to, several online support groups. They are incredibly valuable…a source of information, of support… Sometimes, they represent the only interaction that a lung disease patient or his/her caregiver has with the outside world on a regular basis. They offer companionship to a segment of our community that really needs it!
Mary and I are both Executive Board Members of EFFORTS, an international online support group. We don’t contribute to the discussions on a daily basis, but we do read the posts just in case someone touches on a subject with which we feel we can help. In the process, we have learned a tremendous amount of stuff. We also are members of COPD Navigator, created and maintained by Mike Hess, of Ultimate Pulmonary Wellness, run by Noah Greenspan, and COPD - Breathing to Live, a group that enjoys a lot of input from Karen Deitemeyer, an amazing lady and a good friend from Florida. We also read and contribute to COPD 360, the online support group of the COPD Foundation.
All that said, we see an incredibly array of suggestions, of questions, of concerns by patients and by caregivers. The attitudes exhibited by the posters range from surprisingly positive to acceptance to anger to the horrible desperation of depression. It is depression that I want to discuss today…
Lately, we have seen what seems to be a lot of depression on the part of the patients in our community. It is easy to understand why someone with a chronic, progressive, incurable disease might fall into feelings of helplessness, which can lead to anxiety, panic, and depression. Faced with the seeming inability to do much of anything without running out of breath, dealing with the knowledge that refusing to wear an oxygen cannula will gradually destroy our heart’s ability to pump blood to the lungs and slowly dull our memories and our abilities to reason, it becomes increasingly depressing. Worse, due to all of the lame reasons that we create to avoid being seen with the cannula, we tend to isolate ourselves socially. Our friends and family are faced with the wonderment as to why we seem uninterested in doing stuff with them! We decline invitations to go shopping, to go out to eat, to the theater, to play golf, all of the things that we have always done with them. Unless we somehow summon the fortitude to tell them what is going on with us, it is simply going to lead to confusion, to resentment, and to a gradual decrease in the invitations to go out and do stuff.
Guess what happens then? The newfound lack of caring (from our viewpoint) by friends and family is piled upon the depression that is already forming because of the deterioration brought on by our disease. We are not only sick, we are sick and alone!
Not everyone is going to succumb to the feelings of abandonment and anxiety brought on by our disease and our own sense of secrecy. Thankfully, there are those who possess the stubbornness, the will to overcome the inconveniences, the discomforts, the loss of abilities to do the stuff that are limited by our breathing problems. Some of us have the good sense to wear our cannula where people can see us, to communicate with those people so that they have a chance to understand our seeming changes in activities. (If, after learning about your limitations, they continue to shy away from you anyway, then perhaps there are other problems afoot.) Can’t help you there…certain people are simply toxic, exhausting, capable of simply sucking all of the energy out of a room by their presence, and you don’t need that.
So, depression…it does not come in just one form. That would apparently be too easy. We mentioned the anxiety, the panic attacks, the normal garden-variety depression that can be treated through counseling, talking to religious leaders, understanding friends, and the like. There are also folks who deal with these sort of mental disturbances on a professional basis. Believe me when I tell you that they are incredible at their jobs! (I am not just saying that because our daughter Wendy is one of these professionals, although I have heard her in action and it is amazing…) There is always the attitude that we should be able to work these things out for ourselves, that it shows weakness to seek the advice of a professional. If that is your take on the subject, just tell me how it is going for you so far?
You have heard the term, “Clinical Depression”. This happens when a person moves from the standard depression to an actual chemical imbalance. As might be suspected, it is more severe, and does not respond to the counseling or other treatments. Rather, this is the type of depression that can be identified through chemical and medical evaluations, and can be treated through changes in medications.
The best thing to do is to seek professional help in the effort to alleviate the crushing effects of depression. The worst thing to do is to ignore the symptoms; the overwhelming sadness, the self-loathing, the anxiety, the disturbed sleep patterns, the loss of interest in activities, irritability and isolation, loss of energy, and behavioral changes. Allowing these symptoms to run your life, refusing to seek help will affect not only your quality of life, but also that of everyone close to you. There are people who love you, you know. If you choose to wallow in your own depression, your own desperation without seeking any sort of help, you are dooming your caregiver(s), your family, and your close friends to their own version of that desperation. Are you really that selfish?
Yes, it is your life. You are sick and getting sicker, and you are looking down a tunnel which has no light at the end. You would think that you should have every right to sit around and be a huge grump, a giant pain in the ass to the world. If you were the only person involved, I would agree with you! If it were only you that was involved in your particular miseries, then I would just shut up and let you roll around in it.
Thing is, if you allow the symptoms to take over without seeking any sort of help, and your attitude destroys their lives, defeats their efforts to help you, to care for you, then that is the worst kind of selfishness. Yes, you have every right to react, to get all honked off because you are suffering, but please make some sort of effort to help those who love you. They feel just as helpless as you do. They would love to help you.
Some patients, facing death and deep in the clutches of depression, simply withdraw. They make it known, either verbally or by their actions, that they no longer love their spouse, caregiver, family, or anyone else. They seem to feel that the withdrawal will somehow lessen the feelings of loss when they do die. That could not be more wrong. After a death, the only thing that survivors retain are the memories of the deceased. What earthly good is it going to do for anyone to create memories of a miserable, hateful grump? Is that really how you ant to be remembered? Think about it.
If you happen to be the recipient of that kind of behavior, the spouse or caregiver or both, a family member or even a good friend, please try not to take it personally. Almost impossible, I know, but just remember that it is the depression making itself known. The same advice is applicable to you. Try to get some professional help for your patient. If that is just impossible, get some professional help for yourself. It is NOT your fault!
Just so you know, Mary and I have been there. They have tried to kill me several times. Through toxic shock, through bouts of double pneumonia, through a mis-diagnosis of inoperable lung cancer, through a very real diagnosis of prostate cancer, and through the ravages of COPD, the subsequent double lung transplant and recovery, we have somehow managed to maintain the most positive of attitudes. On my part, it was made possible by the lady that I consider the world’s best caregiver. Throughout everything, I have maintained the attitude that I wanted to do whatever I could do to stay with Mary and Wendy for as long as possible. So far, so good. Neither of us, thank God, have ever fallen into depression. If we had, of course, Wendy would have jumped all over us. She’s like that.
Take care of yourself. Take care of those who love you. Try to leave everyone better than you found them. It isn’t that hard, and it can be so incredibly rewarding. For everyone.
Uncle Jim & Aunt Mary
Reviewed by Cousin Wendy