Memories We Share – Part 18 - Grateful for the Absence

As I sit savoring my morning coffee in a house warm enough to ward off the Fall chill, I swallow a handful of medication my older human system now requires. But I have the means to acquire my needs and I am struck with overwhelming gratitude for lack. My life, so recently filled with caring for my husband around the clock, as his was life was draining away from end stage COPD, has turned, albeit temporarily, into a life lacking the need to be a caretaker every moment of the day and night. I no longer have to be alert to every breath, or lack thereof, that comes from his body.

After three long months of being on Hospice care he was “graduated” from the program on the twenty-fifth of September. This term simply means that his terminal disease no longer can be expected to end his life in three to six months or less. It also means he does not require or qualify for Hospice care.

Was there a miracle? Well, yes and no. No, his COPD is not better but his respirations are, now that we stopped “making him as comfortable as possible.” We almost “comforted” him to death. The theory of keeping a person with a terminal illness comfortable is wonderful and I still believe in it whole heartedly. I do caution, however, that you make absolutely sure that person is, indeed, in the end stages of their illness. In my husband’s case, and I want to stress this is the only expertise I claim, he was being highly over medicated with pain medications and those for Anxiety. The last time I wrote of our situation we had just come home from his second stay in the Hospice ward of the hospital. The attending doctor, along with the results of a long overdue breathing test, caused his treatment to be changed significantly. I had been literally exhausted both physically and psychologically traveling back and forth between administering the medication we were told he needed and the nagging voice in my head that told me something was desperately wrong. His confusion had become so severe that he was hallucinating at times, was rarely awake and when he was, there was a complete lack of personality. He was a bundle of symptoms that all of us who were caring for him attempted to “manage.” I had lost my best friend, lover and confidant and never in my life had I more desperately needed him. He complained of pain whenever a nurse or doctor asked how he was feeling, so doses were increased and so was the depression of his respiratory system, already failing from the COPD.

It has taken a full three weeks for all of the effects of the “extra” medication to leave his system but after the first five days his mind was becoming increasingly clearer and his need for oxygen on a twenty-four hour a day basis has ceased. He still uses it when he feels short of breath or he will take a dose from one of his inhalers but the difference is amazing. I find myself butting in now and answering questions for him when people try to converse about his care and how he is feeling. For three months he was unable to tell if it was day or night, and only responded the he was in pain or so very tired. I would have to fill in the blanks and took copious notes about every aspect of his life, such as it was.

Now, our life is filled with the lack of. There are not Hospice nurses, personal care aides, doctors or delivery people entering our home four or five days a week. There is no need for me to fix him something to eat between meals, he snacks quite well on his own. I no longer watch the clock to note whether it is time for medication, he manages his own. At one point it had to be kept in a box with a padlock and hidden from him, along with the car keys, to keep him from harming himself. I no longer have to schedule my showers when someone is here to keep an eye on him and can allow the calming water to beat down on my, no longer so tired, muscles, as long as the hot water lasts. The responsibility of running to the post office, pharmacy or grocery store for a couple of items no longer plagues me with fear that he will awake while I’m gone. He now runs these errands many days when he feels up to it. I no longer have to try to get my daughter to bring our groceries from town or help with the yard work. Last week he dropped me off at the grocery store while he drove himself to his doctor’s appointment and was even able to carry in a couple of bags filled with groceries when we returned home.

Absent from our living room is the hospital bed, side table and the reclining lift chair. Gone from the bedroom are the four heavy extra tanks of oxygen that required moving when I need to vacuum. There is a lack of longing for someone to talk with, share with, to laugh with! And, most wonderful, is the absence of sleeping alone in the recliner or on the couch. Now we sleep in the same bed and while he is propped on a small mountain of pillows to make breathing easier, our legs can still find each other in the night and the warmth of two wards off the chill of our recent past.