It was in October that my husband was diagnosed with Pulmonary Fibrosis. Looking back at the span of his diseases progression, I realize that at that initial point the impact of the disease was primarily emotional. Physically, the only way he was diminished was by a slight cough which sounded like he was clearing his throat. In all other ways, physically he seemed fine. By December the following year he had passed away from this disease. He remained active up until the two months prior to his passing, at which point fatigue seemed to overcome him and he became weaker and weaker.
In the October of his diagnosis, I was physically fine, too. We both were just two normal people. Very active and seemed to have a beautiful life ahead of us. I was his caretaker, confidant and friend. The initial point of his being diagnosed, it was primarily emotional for me as well. As he progressed in his illness, I progressed in my level of care for him. Taking care of my beautiful husband has been the most profound and rewarding experience that I have ever had. It has also been the most difficult.
Have you heard that over long periods of time spouses start to look like one another? Or perhaps, an owner of a dog will start to take on a resemblance of their dog? I think it is because we grow close to the souls we love. We empathize. If they are happy we are happy, and if they are hurt, we are hurt.
When someone we love feels ill, we feel ill too. If they cannot catch their breath, we feel light headed. If they are scared of what the future holds, we are scared. But, here is the catch.... If we are a caregiver to that person, then in that moment, we cannot just collapse, we have to swallow it down and get it together. After all, logically, we are not the ones that are sick, right? Furthermore, the person that you would normally run to when you are not well, cannot deal with or accept what you may be going through. As a caretaker, it is a scary place to be to know that there is no longer anyone left to run to.
There are moments in care giving, that when the patients back is turned that tears begin to stroll down your face. Or, when you are sitting with them and telling them words of love, that your heart feels gripped with fear and dread. When your partner is sleeping and you listen to the rise and fall of their breath and you lay awake, sick inside.
When a loved one passes away, people tell you that their suffering is over. But, you are still here. Is your suffering over?
When you advocate for the disease, you meet others who have the illness your spouse or loved one had. The disease that you witnessed first hand. The patients will tell you that because you are just a caretaker that you could never understand the frustrations of having the disease first-hand. But, you do not say anything because you do understand. You also understand what it is also like to see it through to the full progression. Past the point that many patients are aware of. You swallow this down. Meanwhile, your husband or loved one is gone.
As I mentioned, it was in December, almost two years ago my husband passed away. It gets cold in the winter here. During that time, I spent most of my time in a blanket. My primary source of socialization, sitting at my computer. Dark circles under the eyes, but, always putting happy-faced icons at the end of my sentences. Everyday, a struggle just to get through. Time passed, not in sections, but by minute. If I could just get through the next minute, and the next... Then, something needs tending. I tend to it. I feel glad I did and wait for the next minute. Then another something needs my attention, and it goes round and round. Until, slowly I notice what needs attention before hand. Somewhere along the line, counting time by minutes, turned into measured days and I realized that it was time to turn my attention to me.
Eventually, I started to see the sunlight. I almost felt guilty about that. At first it hurt my eyes, but then it felt good on my skin. I began to feel proud that I had made it through and continued to take care of what needed tending. I am surviving. I am to the point that I have realized that this is not enough. I have realized that I am not the one who died. I am still alive. I still have a purpose in my life and I want to do more than just survive. I have also realized that Pulmonary Fibrosis has made me sick. I had forgotten myself, physically and emotionally. As my husband became more ill, so did I. As he began to let go of life, so did I. When he died, I did not.
I have to Give Care to myself now.