How Do You Help Someone Who Doesn't Want Your Help?

My father is in the hospital three states away, and there is nothing I can do. Surely, I’m not the only person whose parent moved down south to retire and subsequently became aged and frail but were too far away for their child to adequately handle the details of their care?

His decline into ill health began abruptly just before Christmas of 2022. Admitted to the hospital for pneumonia, he took a turn, and I received a call that it looked like he was in his final days. I flew into Nashville, rented a car, and drove two hours to the small town in the Smokey Mountains where he lives.

Dynamite Holler, in the shadow of the mountains.

There is no hospital near his home because a few years back, the Tennessee governor rejected Medicaid expansion. In the aftermath, several small-town hospitals closed. There is no hospital or doctor in the county where he lives. The ambulance service took him to a hospital in the next county over.

I rented a hunting cabin, because there are no hotels there, and stayed for ten days. During that time, I did what I do best - solve problems and make people listen to me.

When I arrived, my father looked nothing like the mighty Marine he used to be.  Skin and bones, he lay in his hospital bed with his mouth agape, barely responsive to my words.  I pinched his skin and it stayed tented, a sign of dehydration.  This was no surprise as the IV needle sticking out of his hand was not hooked up to anything. 

It took some negotiating with his nurse to get a list of what meds they were giving him.  I had a copy of his Medical Power of Attorney on my phone, but she wasn’t sure if that was good enough.  Finally, she agreed to let me take a picture of the computer screen that she left up while she stepped out of the room, granting her plausible deniability.

When I cross-referenced that list with the meds he took at home, I saw that he was on Cymbalta for pain.  Tennessee is extremely strict on issuing opioids for pain control and it’s nearly impossible to get anything for pain.  I know.  I had my second heart transplant in Tennessee.  When I was given Cymbalta for nerve pain, it turned me into a zombie, and I suspected it was doing the same to him.  The nurse also told me he hadn’t eaten solid food for a couple of days. 

The next morning, I swept into the hospital like I was going into battle.  The same doctor who refused to return my phone calls when I called from out of state was not prepared to meet me in person.  He agreed to stop the Cymbalta and instead place a mattress topper on the bed to alleviate his back pain.  Likewise, he resumed the IV fluids.  I asked for an NG tube to temporarily provide nutrition, but he wanted to surgically implant a feeding tube directly into his stomach instead. 

Within 48 hours of stopping the Cymbalta, resuming the fluids, and providing liquid nutrition through the tube, my father was wide awake and demanding to be released from the hospital.  Because he had been bedridden for two weeks, the physical therapy team recommended that he be transferred to a rehabilitation hospital before he went home.  He didn’t want that, but his wife and I convinced him it was for the best.  What we did not expect was that he would raise such hell in that facility that he would be tossed out in less than 24 hours and told to never return.  In the aftermath, he was furious with me for “putting him in a home” and insisted that I not be involved in his care again.

This brings us to now.  Over the past two years, he really hasn’t returned to full strength.  The feeding tube was removed, but he still is a very picky eater.  His weight has dropped below 100 pounds.  Granted, he is an amputee, missing his right leg below the knee, so there is some allowance for that missing weight.

This past weekend, he told me he was very sick.  I told him to go to the emergency room at the hospital where he stayed before.  Monday morning, he went to the hospital by ambulance.  At that ER, they determined that he has pneumonia again, and his body temperature was low, indicating possible sepsis.  They shipped him out to a bigger hospital near Nashville, nearly two hours from his home.

Monday afternoon was a game of trying to find my father.  He didn’t take his cell phone charger or prosthetic leg with him in the ambulance, so his phone is dead.  Once I found where he was, the nursing staff was so busy no one could give me an update.  I left my phone number and waited for a call back that never came.  I finally went into persistent mode, calling every hour on the hour until I got someone who would give me an update.   I also asked for a phone to be installed in his room so I can call him directly.  They don’t have bedside phones anymore because most people have cell phones.

True to nature, now that he is feeling better following two days of IV antibiotics, he is agitating to be released.  He is bored and restless.  He can’t call out on the bedside phone, and without his artificial leg, he can’t get out of bed and walk around.  He upset the nursing staff to the point that a supervisor came into his room to tell him that they would discharge him if he refused to cooperate.  When he recounted this tale to me later, he said that he told her that’s exactly what he wanted.  I reminded him that he’s two hours from home, without his leg and with a dead cellphone so he can’t call anyone to come get him.  Also, he doesn’t have a jacket and it’s been raining and cold in Tennessee. 

Today, I will find out how he’s doing.  Our last conversation was about further tests the doctor wants to run to figure out why he has lost so much weight.  Hopefully, he will listen to the doctor and let her investigate the reason why he has been wasting away.  In the meantime, I’m just going to passively listen and resist the urge to take control and solve his problems.