A Second Time
I was a caregiver for my husband who died of nasopharyngeal cancer, and two years later cared for my mother and stepfather as he became ill and died. Despite knowing the science behind caregiving and all the personal experience with caring for my husband, this second experience impacted my health.
Ignoring Self Care Again
Once again, the stress of caregiving hit my respiratory track and asthma began yelling at me. This seems to be the price my body takes when my heart serves. All the research is crystal clear and consistent in its message. Caring for someone you love has a price. Despite my knowledge and experience, I was unsuccessful in preventing the effect. The second time it did not take three years, this time it took only 5 days. So why can I not mitigate the damages with all that I should know?
Reality of Caregiving Makes Self Care Hard
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 caring for my 85 year old stepfather. No one knew that more than I.
Mom 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 didn’t know which questions to even ask. There had to be a voice stating the reality of health issues for an 85 year old man with a 21 year old transplanted liver. Physicians 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 lone voice for “considering risks and benefits.”
Stresses of Caregiving in the Hospital
We spent long hours in hospital rooms waiting for physicians to “show up” for only a few minutes. It was an “academic teaching hospital”. A team of physicians and residents, but never the same team or attending physician came by once per day. The time of day changed depending on the day. We didn’t leave the room for fear of “missing the doctor.” We got to the hospital early, grabbing breakfast on the way. If the doctors had not come by lunch we grabbed something from a vending machine. Finally, we would leave the hospital to get a real meal and fall into a hotel bed. It happened unexpectedly. I had only planned to be gone one night, had one change of clothes and one night of my own medications.
My Personal Stressors
I felt helpless watching my own family follow the yellow brick road of endless treatment without a map. We did not have enough answers, and little to no medical information. I watched my mother struggle to help her husband use the urinal, as I had done 2 years prior. I was 20 years younger. I witnessed her fear for him and r anxiety at trying to understand the medical jargon thrown at her in ten minutes. Her focus would turn to worrying his clothes and his eating, something she could understand.
Meanwhile, a familiar “look about him” appeared as I had to leave to return to my job 6 hours away. My mother stayed in a hotel that had a shuttle so she could get back and forth in this strange community. It was important to remind her to she take her walker so she could walk the long distance to his room. I hoped she would eat herself as she did not want to inconvenience anyone. I knew when I walked out the door she would have no social support there and we were not sure how or when we would get them back home.
Bittersweet Ending
The story has a sad and beautiful ending. When his liver function returned and his labs were normal they discharged him, afterall he was in a liver transplant unit. One of my stepbrothers drove 3 hours north to pick them up, transport them both 2 hours south 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. I worried all night about how she would care for him. 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.
Unanswered Questions
The unanswered question is- what could I have done differently to prevent the asthma bear, the physical impact of the stress from hitting me. More research is needed. This is the million dollar question we need an answer for, there are two patients in these dramas