Lung disease. When I used to hear that it generated a vague sense of discomfort, almost a feeling of embarrassment. I've come to learn that my reaction was a common one, shared by many. That was back then, before illness entered our lives as our constant companion. My husband and I were married only a short time when he was laid low by a pneumonia which activated his Pulmonary Fibrosis (IPF) and changed our ways of living and looking at life forever. He passed away a very brief 19 months later. The main focus of our new marriage became accommodating the illness, and stubbornly pursuing joy, love, and quality of life in the mean time. Since his pneumonia was quite severe, I did not return to work after our marriage, but became a full time caregiver. What I learned still offers surprises, and blessings.

The first thing I found out was how isolating the illness was, for both of us. I felt that I was living in a different world than the people around me. As we navigated each day with the IPF, my world was filled with medical appointments, managing the supplemental oxygen and other medical technologies, the constant quest for treatment and palliative care, and the need to watch for infections, hypoxia and exhaustion in my husband. As the illness progressed, more and more of my day was given over to caring for him. Bathing, such a simple matter for most of us, became an ordeal for him and left him exhausted for hours. Dressing, preparing to go out, doing any simple task at home, had to be planned and navigated with care. And it took time. Lots of time.

Because IPF is a terminal illness, I wanted to spend as much time with my husband as possible. We both wanted as much love and enjoyment as we could grasp in our time together. While I knew that a certain amount of balance and care for myself, including social engagements, were necessary, I resisted most outside involvement. I didn't feel right about enjoying myself without him.

There became an ever present need to manage family and household duties, which we would have otherwise shared. Some things we both expected I would take on; heavier housework, yard care, the house repairs I could manage, and so on. There were also the things I had to take on when low blood oxygen levels kept him from thinking clearly; our money management, handling of our legal affairs, making decisions, cooking, driving, communicating with doctors and nursing staff, and planning just about anything.

The net result was a tremendous sense of isolation, accompanied by the helplessness, frustration, fear, and anticipatory grief, which I think anyone experiences when their loved one is struck by a debilitating and terminal illness. And, of course, there was the terrifically sad business of watching someone you love more than anything in the world struggle for breath with the smallest of activities. As I look back, it's still heart wrenching.

So how does one survive - emotionally - in all this? In hindsight, I'd have to say the hands-down most helpful survival tool is a strong sense of spirituality and an ability to rely on faith. The belief that God sees what's going on, and that it's somehow necessary, somehow good. That may sound crazy but without that faith the situation would have been impossible to accept. If you are a caregiver, whatever your spiritual beliefs or religious orientation, now is the time to put them into action. There may not be time to pray every day or to go to church, but discussing helpful beliefs, and keeping a positive sense of purpose, makes an enormous difference. If you don't have any firm spiritual foundation, let one develop as you go through the challenges the illness is bringing into your life. Let yourself seek and find. It doesn't require a lot of effort. If you're open to it, this situation will bring something spiritually real to you.

I found that the second most helpful survival tool, without a doubt, was the support of friends and family. Both emotional and instrumental help, even if something small, went a long, long way. If you're someone who cannot accept help or support, you will be in very serious trouble. There came a time early on for me when I had to understand that these dear ones wanted badly to be supportive, even though they didn't fully understand what we went through. When someone offers you a helping hand, take it.

It's necessary to counter as much of the helplessness that goes with a terminal illness as possible. One of my sources of support and an avenue for helping others was an internet forum specifically designed for caregivers of those with IPF and similar diseases. What a Godsend. There, I communicated with other wives, as well as daughters and mothers (there were men on the site but they rarely participated), all of us going through some of the same things and searching for constructive ways to cope. We shared information, tips on caregiving, and emotional support. The things my husband and I were learning along the way became shared and useful to others.

There are a number of web sites for lung disease, and several for caregivers. The nice thing about the internet is that you have access to it on your own schedule, which for a caregiver is no small blessing. It offers connection with others who may be geographically far flung. My husband and I lived in a rural area, where there were no others with the same illness. Even if there were, I doubt that we could have gotten out much to meet each other. The internet isn't limited to geography, not even international boundaries, so a whole new dimension of support was available.

Without internet access, or in addition to it, continuing some helpful involvement with family, work, or a volunteer activity here and there, can really offer a sense of effectiveness and productivity. Some of the other caregivers I knew gardened, many worked, some continued to knit or crochet gifts. Learning everything I could about the illness also provided a small sense of mastery. And it enabled me to manage my husbands medical appointments better, and to enter a more active and cooperative partnership with his doctors and respiratory therapists.

Self care, of course, is also at the top of the list for things a caregiver needs to survive. For many of us, it's too easy to focus on the needs of those we love while ignoring our own. There are a million rationalizations - no time, not now, can't because... But I have to wonder how many of those rationalizations are clever covers for the guilt and the depression which accompanies the losses we face. There is such heartache, undeniable as we minister to our beloved husbands, wives, parents, or children with lung disease. Sometimes we turn that heartache in on ourselves with neglect, which, on the surface, looks quite benign.

We cannot get around the reality of our losses, and punishing or ignoring ourselves in the process will not help. We need to share a little of our love and concern with our own needy selves. And believe me, we have needs. If that's too hard to stomach amidst the struggles of dealing with lung disease, it may be easier to realize that the better a caregiver takes care of herself, the more energy, clarity, and emotional stability she'll have for her loved one.

This is where I would normally offer the advice you so often hear - get the sleep, nutrition, exercise, and emotional support you need. And I guess there they are - those words we've all been hammered with so often. But the fact is, if you're a caregiver doing even the most minimal job, you're already expert enough to apply loving acts towards yourself. You're already capable of figuring out which care strategies are the most helpful to you and how to fit them in to your day. You're capable because you are already a master at prioritizing, creative thinking, organizing, advocating, and implementing. The only missing element, if there is one, is permission to do these things for yourself. As a fellow caregiver, I'm giving you permission. Talk over with your loved one whether you have their permission. Then you're free to spread your love to yourself as well.

Finally, do not let the tasks of caregiving weigh you down in drudgery and exhaustion. Limit or eliminate anything that taxes your mood. Find ways to think which let bothersome things roll off more easily. Let yourself be more assertive and positively focused. This will help you continue to see the little blessings in life, and let you feel the love between you and the one you know you'll lose one day. These things are so easy to write! But they were not easy for me to do, and I worked at it every day. Some days I succeeded, some days I lost the battle to depression, anger, and grief. I hate to think of what our lives would have been like without having made the effort. With these pleasures, some of them little, some of them huge, I was recharged and rejuvenated. With these pleasures, my husband and I loved and enjoyed each other in the last days he had left on this earth.

As I look back over those 19 months, and forward to life without my greatest love, I am still filled with a sense of awe and gratitude. The number of people who helped my husband and I, with no thought of thanks or repayment, is nothing short of astounding. The lessons in love, patience, and flexibility that the caregiving brought will always serve me, as well as those whom I love. My understanding and appreciation for the brevity of life, and its preciousness, are rooted in the aching loss of what I once held more dear than my own life. I wouldn't wish IPF on my worst enemy, but for the sake of love, even with all the losses, tragedy, and struggle, I would do it all again in a heartbeat. I pray for my husband, who is finally free of the ravages of lung disease. I believe that he is safe, and filled with comfort and joy at last. Included in every one of my prayers is a special moment for all caregivers, who face the known and the unknown with courage and love. Know that God sees what you do, and that your journey is for the best.

* Our thanks to Mary Cody for volunteering to write this article for the American Lung Association of Minnesota. She wanted to share her personal experiences and support with other caregivers as they navigate their journey with lung disease.