I am a caregiver researcher. I was a caregiver for my husband and one year later I stepped briefly back into the role for my mother, as she was caregiving for my stepfather. Despite my knowledge of the science of caregiving, despite my personal experience with caregiving, the toll hit me once again. The stress of caregiving, the shock of grief hit my respiratory track. Once again, my asthma flared as a result. This is the price my body takes when my heart serves. As my friend and social worker reminded me, “grief resides in the lungs”.
All the research is crystal clear, it is abundant, and it is consistent in its message. Caring for someone you love has a price. I was once again unsuccessful in preventing the effect. This time the toll was quick, it did not take three years, it took only 5 days. So why, despite my knowledge, could I not prevent this crippling effect on my body?
The reality is that when you are focusing on someone else, you sacrifice yourself, because you have to, and you want to. My 77 year old mother needed help my help as she faced a sudden illness with my 85 year old stepfather. No one knew that more than I. She needed an advocate to slow the medical system down and help her understand what was happening. She needed someone to insist we speak to a doctor and ask questions. She needed to know what questions to ask. A voice was needed to state the reality of health issues for an 85 year old man with a 21 year old transplanted liver. Everyone needed to be reminded we cared about a person, more than a 21 year old liver. It was clear that as the palliative care expert, I was the voice stating we “consider risks and benefits.”
A physician, uncomfortable caring for a 21 year old liver transplant, was uncertain how to care for the liver. His warnings and fear rubbed off on the family. Without a plan of care, or a physician-initiated discussion on goals of care, we loaded my stepfather in an ambulance at 6:00pm to head to the liver transplant center and “make sure he did not loose his liver.” Upon arriving he had the same battery of tests repeated that he had done earlier that day, and the day before. And then we waited. He was not allowed food or water for 30 hours, “in case the doctors want to run or test or do a biopsy.”
Another challenging issue was that my stepfather did not fit in at the “transplant unit”. These units provide excellent care for transplant patients, but this means they do not care for 85 year old men, they are too old for transplants. The staff did not understand his frustration with incontinence, his urgency to urinate, and his inability to hear or understand their quiet voices and quick medical speak.
What’s the stress on the family? Why would all but one of us who were in the hospital sitting with him end up with a respiratory illness? We spent long hours in hospital rooms waiting for physicians to “show up” for minutes. Because it was an “academic teaching hospital” we saw a team of physicians and residents, but never the same team, not even the same attending physician. We saw “the team” once per day and the time of day we saw those doctors changed, depending on the day. We didn’t leave the room for fear of “missing the doctor.” We had to get to the hospital early and grab breakfast on the way. If the doctors had not come by lunch we grabbed something from a vending machine. Finally, at some point we left the hospital to get a real meal and fall into a hotel room bed. His hospitalization and transfer happened unexpectedly while I was hours away from my home, so I had one change of clothes and one night of my own medications.
My stresses included the helplessness of knowing better yet, watching my own family follow the yellow brick road without a map, without enough answers, and with no medical information. I watched my mother struggle to help her husband use the urinal, as I had done 2 years prior with my husband. I was 20 years younger than she. I watched her fear for him and I heard her anxiety at trying to understand the medical jargon thrown at her in ten minutes. I saw her focus turn to worrying about his clothes and his eating, something she could understand. Meanwhile, a familiar “look about him” came as I had to leave to return to my job 6 hours away. I had to leave Mom alone, living in a hotel, dependent on a shuttle driver to get her back and forth to the hospital, and living on hospital and hotel food. I knew when I walked out the door she would have no social support in this community and I was not sure how or when we would get them back home.
The story has a sad and beautiful ending. When his liver function returned and his labs were normal they discharged him because, he was in a liver transplant unit. One of my stepbrothers drove 3 hours north to pick them up, transport them 2 hours back south to their home, and then return home himself to work the next day. Before he could head back to his home he had to get scripts filled and a nebulizer to help him breathe. They had to wait for the home health nurse the next day. When I talked to mom that evening they were so thankful to be home, but they were exhausted and both anxious about how they would manage. The next morning I got the call while at a palliative care conference, he died in his chair. An ending I am so thankful for, and know more than anyone how lucky we were.
Following his death, a grieving widow myself, I walked the path with my mom. And my body reminded me I was not yet healed, and grieving again. I struggled for air, held back my own tears because of it, and tried to coordinate getting back home from a conference. I am an expert and was living proof again that the stress of caregiving impacts health. Not one single health care provider asked my mother or any of my family how we were during the process, if we needed anything. Like me, my oldest stepbrother became sick and struggled with a respiratory infection. This was the cost of caregiving, of sitting vigil, in a place for sick people.
As I drove the 6 hours home from the hospital, tears rolling down my face, I had guilt at leaving mom, sorrow at watching my stepfather clearly decline, and a sense he was dying. I did not think he would make it home. That “look about him” brought back memories of my final hours with my husband, almost exactly two prior. So the painful images came forth again in my own loss.
The unanswered question is- how do we prevent stress and grief from hitting the lungs? More research is needed. I have three more aging parents, and life holds more stress. How will I be able to keep the stress and grief from the lungs?