22 phone calls and 55 text messages into my day I am ready to pull my hair out. No, I am not talking about my work in IT service management. I am describing my day – just one day –dealing with the broken processes within our healthcare system. I now have two critically ill parents. Each of them needs two medical procedures that require specialists, planning, appointment setting, tests prior to arrival, and other supporting services. Each department calls me separately. And despite having a centralized electronic medical records system – I have to communicate with each one of these isolated departments and multiple staff members.
Unending Phone Calls
Each phone call is the same. First, explain why the patient needs the procedure. Then there are the medical-history-any-known-allergies-any-concerns-that-we-need-to-know-about discussions. We begin planning – trying to fit the appointments into my schedule, my parent’s schedule, the care provider’s schedule, and into the doctor or facilities’ schedule. I took 22 of these exact phone calls in one day. Would it not make more sense for us all to get on the phone at one time to have these conversations? Can you imagine my parents trying to figure out who all of these different caregivers are? I am exhausted just thinking about it.
Then there are the care providers that I have hired to manage my parents’ care 24×7 in a care facility. Yes, that is right! The care facility with skilled nursing cannot handle my parent’s needs – a bit like false advertising. “We take care of your parents who are not in great health” – if they can pull down a cord or push a button and can wait 30 minutes for you to arrive. While the care is adequate, it doesn’t meet my parents’ needs. So we get out the checkbook and double down on the care providers to fill the gaps.
Once a new procedure or required appointment is scheduled – I then have to let the care providers know. Pass along the dates, times, procedure preparations, and procedure requirements. Then I have to call the care provider’s management team and tell them the same thing so they are aware of my parent’s “changing needs” – really, they need to know so that they can figure out how much more to charge us. The endless barrage of text messages back and forth until we have completely exhausted the topic and my fingers, as I try to spell medical procedures that have not yet been learned by my phone’s spell check.
Later in the Afternoon
It’s 2 pm in the afternoon and I still haven’t sat down to eat. I’m running on caffeine and hugs from the dog as my life spirals out of control. All of this is happening on the same day that the repairmen are replacing the pipes under my house that take our waste and connect to the sewer line in the city. Every 15 minutes someone walks in through my front door dressed in white bodysuits and ascends into the bowels of my home. The dog jumps from the couch to warn me of the stranger approaching. It will take 5 minutes to get her settled again.
It’s dark under my house. I bet my phone doesn’t work in the crawl space…I just want to escape my life. Crawl under the house where no one can find me – where it is quiet and still despite the chaos above. And yet I want to spend every last minute with my parents.
I think what I find particularly frustrating are the people that call just for the sake of calling. Like the social workers who call to let me know that a nurse will be calling to schedule an appointment. I mean I don’t need foreshadowing for a telephone call. Just have the nurse call me and schedule the appointment.
Or the person who calls to see if the surgery has been scheduled before anyone ever calls me to schedule the surgery. I know that all of this now requires at least 4 more calls. The call to schedule the surgery and the follow-up call to again check to see if it has been scheduled. Then I have to call the care provider and the care provider’s management team and let them know.
And in the background, there is this ticking clock….tick, tick, tick. I’m late again on another deadline. I haven’t written the 4 articles that I have been contracted to write – and get paid for, or the other two that I am doing for free. When is there time for me, time for my family, time for rest, time for relaxation? When do I get to do the work I feel so passionately about – the career that I love? I’m tired of listening to my own excuses.
And I’m angry, really angry when my own family calls and demands that I follow up on financial matters. My own family – who are not here to do the work, answer the phones, deal with adult diapers. But I’m the one who is selfish. I am numb to their threats and I am bewildered at how people change at death.
And yet I just want to spend every last minute with my parents.
The Next Morning
I woke up this morning at 5 am for some unknown reason. I went out to the kitchen to make coffee. I knew the bean grinder was going to make a lot of noise, so I took the coffee pot into my bedroom to grind the beans. I didn’t want to wake my son. Once the grinder had finished, I took it back out to the kitchen to brew the coffee. 15 minutes later I returned to the kitchen only to find coffee and grinds spilling all over the counter. I had forgotten to put the filter in, again. I spent 45 minutes cleaning up and grinding/brewing a second time. I ended up waking my son anyway. It took me an hour to get a cup of coffee – an hour I didn’t have. And yet somehow I stayed calm on the inside.
At 7 am the first text message came in – one of the 1-on-1 care provider’s car was stolen last night and she wasn’t coming into work today. I’m scrambling to find a solution to get my mother to surgery while they finish the sewer line under my house. I sat for 30 minutes to work on my deadlines and responsibilities. Just 30 minutes before another storm – uncontrolled, absolute chaos.
I can’t help but think that there has to be a better way. There has to be a better way to take care of our senior human beings with greater dignity and a higher level of respect. Is there not one place where I can put my parents where they will be taken care of in their final days? Why do I need to shovel them from one facility to another? Why do they need 6 different specialists? Social workers? Care providers on top of care providers?
Why is there not one system where all of their medical information and history resides? Why do we ask the same set of questions over and over again? Why do we put so much responsibility on family members so that instead of spending time with their loved ones in their final days their lives are turned upside down in this sea of chaos, disorder, confusion, havoc, bedlam, pandemonium, uproar, turmoil, madness, hullabaloo, wild disarray, and disorganization?
I just want to hold my mother’s hand as it shakes and kiss my father on the forehead and let them know I am here and that I love them.
Thank You to My Friends
If you are one of the people who has lovingly checked up on me, left a message, called for work or for personal reasons, or sent a text asking me, “how are you?” and I didn’t answer – just let me say “I am sorry.”
I really have no idea how to answer your question. I don’t want to yet again give you an excuse for why I haven’t called or emailed or sent in my article. I feel like an epic failure and nothing I do changes it. This has been a 2-year shitstorm with this same day repeating over and over again and it isn’t over yet.
Know that I love you and that your thoughtfulness means the world to me. But to answer your question…