(This is the 3rd entry in a continuing series telling the story of my experience caring for my very ill elderly mother who is attempting to recover from surgery in a healthcare center. If you would like to read the story in chronological order, start with the entry entitled "The Other Side".)
I have a pill box the size of a walnut with a little bumble bee on top that a friend of mine gave me once for my 40th birthday. My mother’s pillbox is the size of a five-pound box of candy. It has a 6 x 7 day grid. In each slot goes a rainbow of pills of different combinations. At 6 AM, 9 AM, 12:00, 3:00, 6:00, and 9:00 PM my mom takes pills. There are 10 different pills in the 9:00 PM slot alone. Filling in the pill box for the week is almost like an exercise in higher math along with a dexterity quiz and it has sent my mom and us into spasms of confusion if not laughter more than once. Errors are easy to make and almost impossible to avoid. At the healthcare center where they controll the pills and their distribution it is no different.
Take my mom’s pillbox and multiply it by 20 patients and you have what each nurse in the Healthcare center deals with all day long. Mix in the fact that there's a nursing shortage so many of the nurses are temps and unfamiliar with the patients and you have a combustible situation. Like a modern day version of “One Flew Over the Cuckoo’s Nest” the nurses push their pill carts up and down the hallway dishing out prescription pills to their feeble patients, providing just enough artificial juice to keep their life meters above empty. And the patients like my mom don't like taking the pills.
One day we went to visit a friend of my mom’s, Marjorie, who was over in the other wing of Healthcare, at 97, dying of cancer. We asked her how she was, and she answered forcefully.
“They sure make it hard to die around this place, pumping you full of pills all day long.”
Ten days later a little flower in a vase on the nursing station front desk had a notice that Marjorie had died the night before. Bless her soul.
Just like in the movie, I made attempts to circumvent the medication system. First there were the difficulties having the nurses get my mom her Parkinson's medication in the correct dosage at the right time. We saw the results of this in my mom's spasmodic movements and met with the nursing director to get it straightened out. Turns out, they had been crushing my mom's pills and putting them in pudding for her to swallow and sometimes they'd substitute her evening Sinemet for her daytime one and the two dosages were very different and the evening one is time-release so by crushing it, it was like injecting her with an explosion of medication. The poor girl is already suffering enough I cried. The nurses tried their best to get this straightened out and eventually did but we still had to watch out for the new temp nurses who didn't know the details.
As I looked at the huge numbers of pills my mom took every day, I wondered who knows what happens to patients when you mix ten different medications together in a body that weighs only 86 pounds and is 80 years old. It's like one of those sushi restaurants where the different sushis float by on little boats or a treadmill of pills. As a new symptom shows up, a new pill is prescribed and picked off the cart and added to the mix. Once I figured out exactly what pills were which and made my own list, I took on the task of sweetly intercepting the nurse and taking the pill cup to my mom myself. Then I would sort through them. This wasn't rocket science if you ask me. My mom could hardly swallow because of pain in her throat from Parkinson's and the pills would get lodged in her throat. I said to myself, why does my mother need to take a Cholestrol-lowering pill when she isn’t even eating?” and I’d grab it out of the pill cup and toss it in the garbage. My mom would give me a smile.
Sure enough, it seems that our country’s earnest attempt to deploy all our resources and intellectual capital to extend life and make for healthier living, has created this massive pileup of pills at the end stage of life, sustaining people in bodies that in every other way are yelling and screaming at us that they want to go. One has to believe the pharmaceutical companies look upon nursing homes as cash cows and will do whatever is necessary to sustain our belief that pills are the best way to go.
We choose through pills to stifle the body's screams. Mind over matter. But the mind and the body of the patient have a tricky relationship and a strange dance at the end. My mom seemed to be singing the refrain “Should I stay or should I go?” over and over and over. It's hard to pass up the alluring pill cart with it's promise of the fountain of youth.
But in the end it is the body that wins out over the mind. Oddly enough, as my days at the Healthcare center passed, it seemed that one of the only ways to escape this mess and die is via an error in medications. While I was with my mom I witnessed at least two cases of life-threatening mistakes in medication for patients on my mom’s wing. The only way they were noticed was because family was there to intercede. Without mistakes god knows whether these folks would ever escape their misery. To me this is a sorry commentary on our society’s attitude to dying. We use pills to extend the struggle and keep the finish line of life out of our grasp. And the result is we force death to happen by trip ups, by artificial means where the system ends up to blame. There’s really no one to blame. The underpaid and underappreciated careworkers are doing the best they can in a system that is impossibly distorted and complex. We spend our money on pills, tubes, and extraordinary equipment. Not comfort, care, and dignity in death. Denying death is the driving force.
This reminds me of a funny conversation my mom had on one of her worst days so far with one of her doctor’s. She was facing the question of whether to have a feeding tube inserted because she wasn’t eating and her weight had entered the “danger zone”. Death was knocking on her door. One doctor had suggested and advocated that it was time to do the feeding tube. My mom was frightened by the thought of it and her living will said she didn't want it, but she also wanted time to think it over and weigh her options. After all the Shiavo case was blaring on her tv twenty-four seven during this time. I guess it’s a matter of what are you more frightened of, the feeding tube and all of its ramifications or death.
She asked to see another doctor she knew well. He came by and had a conversation with her about the value of quality versus quantity when it comes to life and he advocated against the feeding tube. After a pause, my mom laying in her bed said “Yes, doctor, I think I’m ready to go.”
The doctor, a little confused, said “Where are you ready to go to Virginia?”
My mom answered exasperated, “Well I don’t know, doctor. Where ever it is you go.”
My mom didn't get the feeding tube, but she did start eating more and drinking the heavily caloric Ensure that the nurses brought along with the pills. She gained a little strength. I guess she has a few more loose ends to tie up and people she wants to see. Should I stay or should I go? One never knows in the cuckoo's nest..
to be continued...
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