ECT and Parkinson's Disease

"I can't go today. Please? Can we skip it? I promise we can go Friday."

It's been a long, long night. Casper could not sleep, and as I dozed in between tremors rocketing across the bed and her attempts to find a comfy spot between muscle cramps I looked up and found her staring at me, wide eyed and awake, but not focused or truly alert. I'm bleary as the stupid alarm goes off, telling me Chloe needs to get to school, and I need to get to work early to make up for lost time and four hours of meetings. I am so excited...for coffee at 7-11, where it's $1.00 Wednesday.

"We have to be there at 10am today. You can sleep for another two hours or more. Are you sure you want to miss this one?"

Casper has had ten days in hell. Truly. Her neurologist has asked her to try ECT to address her tremors and the depression that is part and parcel of Parkinson's, chronic pain, and debility before he will try actual PD meds and meds to assist her failing memory. We've spent the better part of two months doing all the requisite medical "stuff" to get it approved- mounds of paperwork, records, EEG, EKG, labs, doctor visits, a four hour interview... none of it easy for someone who is not so sure she wants to accept the PD label or to hear her symptoms over and over and over... You get that, right? Because when a medical provider hears "dementia" they suddenly forget that the person in front of them is an adult, has had a career (in the same field, no less) and can still talk and think. And the spouse tries to stay out of the way but has to intrude repeatedly because the history is frequently not complete, true, or accurate, and being asked to remember stuff you can't recall makes a person feel, well, stupid. Useless. Dependent. Pick one- none of them feel good when you try them on.

Suddenly all of it is done, and there is a call. "Congratulations- you get to start at 7am on Monday!" Excuse me? 7am? Casper does not do mornings.

But there we are. It is 0640, and we are at an outpatient surgery center trying to make sense of this. The orientation, at an entirely different location, said I would stay with her until the procedure. Then I would be back with her afterward. We were encouraged to read about it. All the other centers said the same things. Family support is not only important, it is required and necessary. And there we are. Walking past Jesus painted on the wall holding surgeon's hands, implying a warm and fuzzy and safe place. Such a great idea. Except Casper is not especially religious. And warm and fuzzy is not what is waiting for us.

Nobody meets us. We walk too far and have to be taken back to the holding pen. There I am told I am not to wait, that Casper needs her privacy. I am to wait in the waiting room. They will come for me when "they" are ready. Casper looks panicky, and asks me not to go. They tell her no, and show me the door. Did I mention that ECT is electroconvulsive therapy, where they will use anesthesia to put her out, then apply enough current to Casper's brain to induce a sizeable seizure while she is medicated to paralyze her to prevent muscle pain? Who would want to be alone while waiting for that? "We need to get her history. You can't be here. It's a violation of HIPPA."

Now that makes sense. A patient who has PD with dementia should be made to be alone to provide a history she cannot remember because I might hear something she can't remember while I am providing it because I provided the records. That totally clears it up. Absolutely. "There are other patients providing their information, You cannot hear it." But the other patients can? How does that work?

I get that there is stuff that needs doing. IV's, vitals, all the rest. I work with nurses. I am medical in my background as a social worker. But I am all about the patient having support, and cutting through red tape to make things easier for the patient. I go back to the waiting room, where there is, gasp, a private interview room that is going totally unused. Because that might just be where those patients ought to be disclosing their histories and information, with the support that they ask for. Instead, I mention casually to the receptionist that I have Casper's consents for the procedure, and she is in the back without them, and cannot remember her history. A phone call later and suddenly I am allowed in, for a bit. Casper is alone, in a chair, staring at consents she has tried to sign but cannot see. Note to staff: you may have Jesus on your walls, but your patients still need their glasses for the miracle of sight.

 "Read these. I think I got them wrong. They won't tell me." Her hands are shaky. Parkinson's tremors get worse with stress. Nobody there has noticed that her leg is now tap dancing and her hands are unable to hold a pen. She has signed in an illegible scrawl I do not recognize. I hand the staff the consents that we were sent with, and they realize she has signed the wrong ones. They shove them back at her. I show her where to sign. Nobody offers even a clipboard.

"You can go now." "No. I want Jill here." "No, she has to leave." They start to have her provide family medical history from a computer screen. Nobody asks if she can see the screen. I am fascinated. Apparently HIPPA allows a patient to read diseases from a screen and say what ones apply in front of other patients. Casper, like all other dementia patients, has already learned not to tell she can't remember. She covers. She won't tell she can't see the screen. I step in. I tell the nurse who has had what in her family- cancer, heart disease, smoking... "She needs to tell me." Cute. Ok, try it. I dare you. And then let's make her feel worse, shall we?

Then the MMSE. That's the Mini Mental Status Exam. It's used to gauge memory. Only today it was used to make Casper feel humiliated. "You do not know what county you are in? Why?" She's guessing- Riverside? Orange? San Diego? I pray. Literally. Lord, let me not hurt someone who does not know her job, and let Casper not remember this after the meds today. (Later, she will ask "Why can't I remember what county I am in?")

I am once again ushered out. Casper is holding on until the last moment. More than an hour later I am finally brought back to sit with her as she awaits treatment. She's got an IV, and an ambu bag hangs in a bag on the end of the gurney next to the IV bag. I am aware that if I saw that I would have run out the door. We meet an anesthesiologist, who says he is experienced. He is totally unaware of her medical history five minutes before her gurney is taken away to the ECT suite. I am suddenly very afraid.

I am told to wait once again in the waiting room. Finally someone allows me in, and Casper is waiting in a wheelchair. She is tired, ashen, but okay. On the way home she is upset with her memory loss and feels more depressed, not less. And this is only the first visit.

By Friday they have realized that she needs more seizure activity, and they up the ante. (seizures are what makes this treatment effective. They have to be of a specific quality and length to make a difference.)  I have too, having sent a letter of complaint to the treating physician about her care and his staff. We meet half way, and he promises better. Afterward, he comes to get me. There has been a problem. They changed the routine, she is "agitated" and needed extra support. That is one word I would never ever use for Casper. Calm, capable, even under extreme pressure. Agitated? Disoriented? Kicking and yelling and fighting? My Casper? The doc and I talk. I take notes. I will research this over the weekend, and we will meet again Monday. Casper is sobbing when I see her. The staff try to have me sit, not hold her. I suggest they find someplace else to go. When she is calm, we roll, as a chirpy aide tells her to "be happy." Really?

Friday night she finally remembers what made her so scared. She came to while still paralyzed by the meds, with the ambu bag over her face but without air being pushed, and unable to breathe. Her reaction, fight or flight, was exactly what it should have been. She was fighting to breathe. And she could not talk or understand what was happening. But she could remember.

Monday. Casper is deathly afraid. She's thirsty after being NPO again. (Nothing by mouth). The staff tries to prevent me from walking her back. They are not successful. We tell them the doc must meet with us, and so must the anesthesiologist. The nurse tells me "We will be just fine." I want to ask "We? Which we are we?" As soon as Casper is in the waiting area where family is allowed, we ask for both docs. The treating doc meets with me. I explain the issues. He is surprised, but admits her memory could indeed be entirely accurate. She was monitored, and was not in danger, but her experience would scare anyone. Remember, Casper has to do this to receive PD meds and memory meds. This is really not optional, at least for her. For us. To keep her here and present. He promises better. The anesthesiologist tells me she will be there 100%, no mistakes, no breaks, no loss of air. Casper is still shaking. The stress is setting off her PD symptoms. The anesthesiologist has no idea she has PD. I am not reassured.The nurse keeps calling Casper "sweetie" and referring to her as "we" I think to myself we should ask her to have ECT first today so see how "we" like it. I behave myself. Barely.

I kiss her goodbye when they come for her gurney. The trip is maybe fifty feet. Mine is longer. Casper's is a lifetime. It shatters her trust. She's a nurse. She trusts other healthcare providers to care for each other.

More than an hour later, no word. We are 45 minutes overtime. Finally I see the doc. I try not to think of Doogie Howser. I kind of wish it were Doogie- at least in real life he was gay, and part of the family. He tells me she was so long because she was even worse this time. They changed the meds, they tried to compensate, she reacted badly, and I still can't see her because she's still not okay. Oh, and they gave her a med, of necessity, that could make her stop breathing because of how it reacts to PD. Do not leave her alone at any time at all. Now go wait. They will call you. It starts to pour rain outside. The clouds get darker. Now I am the agitated one.

"You are Mrs. Casper's 'Friend?' " No, I am Mrs. Johnson-Casper. Any other questions??? I go get the car, and then go back for her. She is shaking, shrunken, crying, upset. There are marks on her face and body from the mask and restraints. She is trying to keep it together. We hold hands on the way out. Jesus does not fall off the wall.

"I was crazy. I hate that. I am so afraid." This is my Casper, the one who quit a job to take care of a patient who needed a home and did not have one. My Casper who helped get me to see a child needed rehab. Casper who stood by me as I lost my wife and laid her to rest. Casper who helped me figure out who I was after the biggest loss of my life. Casper is now afraid.

So it is Wednesday. Yesterday she had an endocscopy, more anesthesia, another IV, and we were told she can't swallow and is choking because the PD is getting worse. We had to start the talk again about G tubes and alternative nutrition and suction. I leaned on my precious hospice nurse friends for guidance. I can talk all day long about stopping G tube feedings at the end of life. I'm not terrific about the discussion at the beginning of an illness. especially the illness of my partner. I am not ready to accept we might actually be facing that. Not yet.

And Casper has not slept. She looks ragged. She's tired. She's tremoring. It is 6am. Insanely early, but by now I need to know if I am leaving work mid day, or staying. Are we doing this again, or has she had enough? Chloe has to get to school in an hour. I have meetings. Casper is afraid.  I hate this.

"I can't do it. Can we wait until Friday?"

Oh yes, we can. You have given this your all. Later I find out that she can remember choking, and being unable to swallow. I call all of her docs. The neurologist's office says they will look at new meds. Therapy. They believe she cannot swallow. But she needs to finish treatment. Because then they will know it is all PD, and will finally treat her for it. And I am so tired, I thank them. I think later I should have invited them to witness Casper's "treatment." And her heroism. Because as much as I believe in ECT as an effective modality, I am shaken by its reality, and what it does to someone with an underlying condition. I pray this is worth it. And I hope that in the long run it will be worth the trauma.

Tonight we went for a walk. The first time in a long time. I am finally home from work before dark, and Casper finally agrees. The last time she led the way. She shook off my arm when I grabbed her on uneven spots and curbs. Tonight, she is listing to one side. She can't get her balance. I find myself almost yanking on her to keep her upright. She nearly falls several times. When we get home she hands me her phone to call her brother. She cannot manage a phone tonight. There is kid drama, and she monitors it through our window. She is managing to remember everybody's name. But tomorrow is once again a mystery to her, and she is already afraid of Friday. We meet in the middle. One day at a time will have to do. Friday is still two blessed days away.