Grief Resides in the Lungs
I am a
caregiver researcher. I was a caregiver for my husband and three weeks ago 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 GI
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. 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
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. 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.
Now, a two-year
grieving widow myself, I will walk the path with my mom. And my body reminds me
I am not yet healed, and grieving again. I struggle for air, hold back my own
tears because of it, and try to coordinate getting back home. I am an expert
and 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. 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 years ago. 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?