The Caregiver Dilemma: Figuring out How to Balance Everyone’s Needs

By: Loolwa Khazzoom, Founder, Dancing with Pain

February 14th, 2009 • Patient AdvocacyPrint Print

On Wednesday morning, just eight hours after I had returned to Southern California, I was deliberating whether my mother’s return to the hospital was serious enough that I needed to cancel all my meetings over the next two days and jump back on a plane up north, or whether her examination was minor enough that I could stay and take care of my own life.

Among other factors to consider, I was exhausted. I felt that a trip back up north, so soon after having returned home, would wreck havoc on my own body — ultimately serving neither my mother nor myself.  In addition, I am single-handedly taking care of both my mother’s and my financial needs. Potentially jeopardizing my job, by constantly canceling everything and leaving town, ultimately will not serve either of us.

I think there is a special strain on caregivers, especially when there are no other family members to help out, or when there are family members who are refusing to help out.  What’s more, every decision is psychologically amplified by the fear of leaving our loved ones in the hands of an incompetent medical system, where anything can go wrong — making each situation potentially a life-and-death matter.

In this case, my mother was whisked off to the emergency room immediately after I got the phone call alerting me to the fact that she needed to return to the hospital.  I had barely drunk my cup of coffee before the doctor on call determined that in addition to having air around her lungs, my mother still had an abundance of excess fluid that had to be drained in a more comprehensive manner:

They were planning to give local anesthesia to the area under her arm, administer a gas that would leave her sleepy, make an incision under her arm, and insert a chest tube that would stay inside for a few days — during which time she would be checked into the regular hospital. After consulting with the doctor about the risks and benefits, I approved the procedure. Given that it was going to happen 15 minutes after I hung up the phone, I also decided to wait and see how it went, before making a decision about whether to jump back on a plane.

As it turned out, the procedure was quick and easy.  My mother was put on morphine, to manage her pain, and other than being spacey from the drug, she was fine.  After consulting with her, I decided to hire a friend to drive out to sit with her for a couple of hours.  I had done that a few times in the past, while my mom was in the nursing facility — given that it’s out in the boonies, and none of her friends live in the area.

This particular friend is also an acupressure practitioner, providing the added benefit of offering my mother a session if she wanted it.  I had another friend “on call” to drive up in the evening, in case I felt my mom needed some extra company.  In addition, I’d been scheduling my own body worker to visit my mother every week at the nursing facility, to offer her sessions; and it just so happened that the upcoming session was the following day.

With several people representing me by proxy, I felt my mother was in good enough hands that I could stay home and go to all of the meetings I had scheduled for the next two days.  If necessary, I could always fly up for the weekend to take care of my mother again.

My mother did very well that night, and I felt I had made the right decision.  The next morning, however, when I called my mom from my cell phone, driving on my way to the first in a series of meetings, my mother was hysterical and barely able to speak.  What’s more, she was once again having psychotic delusions about a hospital conspiracy to kill her. 

She had made so much progress in the nursing home over the previous month: Her personality had returned; she was able to speak again; and she was even able to walk on the leg had been broken.  Yet as I spoke with her while cruising north on the freeway towards my meetings, it was clear that my mother had backslid to where she had been almost two months earlier.

I spoke with the nurse and requested that my mother be taken off any narcotic pain medications, explaining that they caused psychotic reactions. Though I was very conflicted, I decided to continue my drive  to work.  I would check back with my mother after the first meeting, I decided, to see how she was doing.

As it turned out, she was still hysterical and, as she had done months earlier, not only saying that it was “too late” for her, but also begging me not to come, because the hospital conspiracy would target me as well.  I spoke with my supervisor and informed him what was going on, letting him know that I wanted to fly up north immediately.  “Your mother is the most important thing,” he said reassuringly.

With that, I cancelled the rest of my meetings for the week, raced back down the freeway to pack my belongings, and took off to the airport, frightened that I had made the wrong decision, worried that I would be too late.

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