Operating Without a Safety Net
I’m throwing together a quick update from my hotel room before I run out the door for another day in my father’s hospital room.
The main news is that we are no closer to getting a diagnosis. His doctor originally tried to dismiss the overall decline in his health as “failure to thrive” because he didn’t want to eat. I rebutted this by telling the doctor that he didn’t want to eat hospital food. Over the past three days, I’ve been his dedicated door dasher, bringing every food he wants to eat from a plethora of restaurants nearby. He can’t eat large volumes of food, but he’s been eating as much as he can.
Fried fish, pecan pancakes, French fries, Dairy Queen malts, biscuits and gravy. I already have his breakfast order for this morning to be picked up on the drive to his room. The man is eating well.
My heart sings with every bite he takes. When I first walked into his room, I nearly burst into tears at how emaciated he looks. I’m not going to give a lot of specifics to maintain his privacy and dignity, but if he was a dog I pulled from the shelter, I would assign a body score of one and rush him to the emergency vet. The difference between human medical care and veterinary care is that the vet would actually do something about it.
Every day I realize how necessary it is that I am here for him. His hearing isn’t very good and he doesn’t really understand what the medical staff is saying to him. Sometimes, his misunderstanding can send him into a panic and I need to calm him down and explain the meaning behind the words.
It’s also crucial that I’m here to advocate for him so he isn’t passed off as “failure to thrive” and dumped back home without a care plan. Doctors have run all of the tests they can at the current hospital, and they have a suspicion of his diagnosis, but the tests for final confirmation of the diagnosis need to be run at a larger hospital in Nashville. We need approval from the VA to do the transfer and tests, and the recent cuts to VA administrative staff are throwing a wrench into that process. He may need to go home and wait weeks - in pain - for approval.
Due to the recent cuts at the VA, United States veterans are having lengthy wait times to get approval for necessary tests to diagnose serious illnesses. Without a diagnosis, they are left to suffer.
It's essential to get a diagnosis because it’s required for him to access the care he requires. If things are terminal, or at least critical, he would be able to access hospice or palliative care. That would give him focused care to attend to his comfort and keep his pain levels manageable. Without a concrete diagnosis, he would just be sent home to suffer in excruciating pain from some vague ailment.
This whole business is running me ragged. Between the stress and the time change, I had a couple nights with very little sleep. Yesterday, I had to make a quick trip to the local urgent care because I had developed a UTI (TMI). It’s probably from a new drug I started recently combined with the stress. I have antibiotics and should be find, but it served as a reminder that I’m acting without a net. If I get sick, there’s nobody here to catch me if I fall, and nobody to care for my father. Caregiver fatigue is a real thing.
Last night, I left his room a little before 6 p.m. instead of staying until 7 or 8. I was exhausted and wanted to eat dinner and take a shower back at my hotel room. Dad was asleep, mildly sedated from pain meds to alleviate his excruciating pain levels. My phone range just as I put the first spoonful of Pho into my mouth. It was him, asking where I was.
Wish me luck as I pick up his breakfast request and face another day of trying to find answers.
Oh this advocacy with an elder is SO EXHAUSTING. I am so glad you are able to be there with him and also please do take care of yourself.
On top of everything you said, society tends to want to toss old people aside. I'm finding that out. We are spent, lived our life. Now we're done. I'm glad you're there to help prevent that.