Three hours of waiting today, and finally they are ready to take Casper in for her ECT. It's already been nerve wracking. While we watch Boston on lockdown and pray for a peaceful ending there, we wait for the docs here to talk with us before her treatment. I am about ready to use a sheet to trip one. I realize they are busy, but if you intend to put my wife through another ECT you had better be ready to talk to me beforehand.
We watch one patient after another coming and going. The coming are those who just had their seizures. They are unconscious, with tubes protruding from their mouths, sweaty, dishevelled. We watch them through the bag holding Casper's Ambu bag, hanging at the end of her gurney next to her IV. She's worried her IV is not running. Her hands tell the tale of other IV attempts that didn't work today. No sweat for the staff here- just another "try." I wonder to myself how they would take it if they had three IV's a week. Would one more "try" mean more at that point? Casper is almost beside herself. She's an easy stick usually and needles to her are part of life. (that would not be me, I promise). But today she's really worried. I interpret that as it must be getting to the point where she is sensitive to the sticks. Linda got like that after she started chemo, and it got worse when she went into heart failure. It's almost like your skin becomes more sensitive. She hated needles by the time she died. Casper is trying not to. I finally get a nurse to come look at it. She is rude. "It's not running because we put it in a lock. It's not supposed to run. See?! Now it's going, now it's not." She has absolutely no idea she is talking to a nurse. It sounds like she is talking to a naughty six year old. Casper knows IV's. She also knows that if they are in a bad spot and likely to fail, they need fluid running to keep them open. The nurse hasn't taken the time to look at Casper- not once. She cannot possible say she assessed her- or that she could see the stress and anxiety, the increasing tremors from the PD as she lays on her gurney. It's impossible to assess someone when you are lecturing them while looking at an IV bag. I take a slow deep breath and thank my lucky stars I took my blood pressure meds that morning. And I thank her. Not because I mean it- because she will be part of caring for Casper after her ECT and I need her to be nice to her. We are at their mercy. My real thoughts and desire to help her understand what Casper is feeling are shoved deep down. I do not need to be arrested today, and making threats would not be a good idea with the mood of the country today and Boston on lockdown.
The anesthesiologist comes to chat. Casper has denied talking to her today. She looks at Casper "We already talked didn't we? Are there concerns?" Casper gets the look I know - it means "I forgot. I can't remember. What is going on? Help me cover." She smiles right back and nods. The doc falls for it. What friggin part of dementia does she not get?" I know Casper got her days and date and place right today when asked. That would be because she practiced all the way here, once she remembered it was Friday. When she woke up it was Thursday and she came here Wednesday. Except it was Friday and she skipped Wednesday. The staff are clueless. They ask only Casper. I am torqued. The ECT booklet says that "families are an integral part of our process. We will speak with you every time and ask how your loved one is doing." That would be the cutest idea. If only it were true.
Back to the doc, who will be putting Casper under. I explain what Monday's doc said- the meds he said he changed, the difference we both saw afterward. The complete lack of agitation and the improvement in her mood. Maybe this is working? She promises to do the same for Casper, to take good care of her. My mistake? I did not ask her to look at the records right then and there. I believed her. That will be the last time. Ever. I should have known when she said she got her history from Casper. She has absolutely no idea that she has PD. The treating doc comes, is three hours behind, and takes off with my spouse before I can really say goodbye.
ECT takes maybe fifteen minutes. The seizure takes less than a minute. Forty five minutes later I am at the desk in the waiting room demanding to know where Casper is. I know the routine. I know other patients have gone in. That means she is in recovery, and they are not calling. The receptionist tells me Casper is still in surgery. I reply, loudly, "That's great. She did not come in for surgery. That means you are operating on the wrong patient. Are you missing someone?" All eyes look at her. She calls again. "You can go in in fifteen minutes." That means an hour altogether. That spells trouble.
As I walk in Casper is still on a gurney. Her eyes are red and full. She's shaking. She's confused. "Are you okay?" (I never said I ask intelligent questions under stress). "Something's wrong. I can't remember, but they did something wrong. I know it!"
I look at the staff.... "The doctor wants to talk to you before you go." I'll bet...
Casper is tearful. She's shaking head to toe. Her feet are tap dancing under the sheet. Her mouth is dry. She's been NPO since 8pm, and it's now 2pm. Not one person there has offered her even a drink of water. I ask. They say they "guess" they can get her a 7-UP. Really? Every other patient has a cup in their hand. Except Casper. She guzzles it down.
The doc comes in. She's talking too fast. "I checked the meds. The information you told me is wrong..." She tells me what meds they used last time. I tell her that's not what the doc said, and that he said those meds did not work the time before, that's why they were changed. "You can ask- I looked. I used what he said he used." Like I give a damn? Look at my wife. She's wrung out, shaking, and upset, and does not know why. But I know Casper. Before this weekend is over she will remember why. "I am trying to understand what you are saying, but I am seeing a different outcome. That tells me the meds were wrong again." I already told the RN in charge of the program Casper would not come back if there was another bad experience. She responded with "That's her choice. She can quit." (Yeah, I adore her too. Eye rolling wonder nurse who does not like lesbian couples).
I try again with the doc. "She looks like it was a bad time. What happened?" "Oh, nothing. It was fine, wasn't it Kathy?" Bells go off. Who calls Casper 'Kathy'? Casper has that look. She nods, but not much. "There was no agitation, no upset, she was calm?" She looks at Casper. "Oh of course. No problem. We need to get that cocktail right, but she did just fine. I will be here Monday. We will review all the records and get it right." She tells me that she personally monitors all the anesthesiologists, and that she makes sure all of them are ready for ECT. I remember back to a conversation she had in front of us with another doc the second day we were there, when she laughed about a new doc doing all the ECT patients when she was off without having oriented him. She referred to it as "trial by fire." I ask about that. She denies it. As we are getting ready to leave, the nurse who was supposed to be taking care of her says in a bright tone "Kathy, we'll see you Monday. Don't cancel again!" I look at her. "Her name is Casper. She prefers that. It's on her paperwork." "Well, she didn't tell me." I feel my tongue bleed as I bite. What part of being a helpless patient at the mercy of a team waiting to zap your brain into a seizure do all of you not get? She won't cross you because you are in control.
On the way home, Casper is beside herself. I feel awful, I told her we had to do this so she could get her PD meds. The neurologist will not prescribe them without a full course of ECT. At this rate it will be July. Yesterday she was falling over sideways and backwards. I caught her, and so did the kids. I have called for a walker. She was losing days, dates, names. The disease is rolling. Fast. ECT stands in our way. Casper says over and over "It's not right. They did something wrong."
Tonight she is struggling. She's afraid of Monday. Her muscles hurt. And she can remember. Awakening distressed. Upset. Disoriented. Wanting up, being held down. Just like before. Most importantly, she can remember.
Because she may be depressed (60 plus percent of those with PD are- it goes with the disease, and with chronic pain. When muscles tremor 24/7 they really do hurt.); she may have dementia. But she can remember waking up, and being held down, and being afraid. Just like anyone else. She has dementia. She can still talk, and she can still tell. She isn't stupid. Diseases that steal your mind do not steal your sense of fear. They heighten it.
Monday is coming. And we are not doing this again. On Monday the social worker and advocate is going to be first on the scene, and they will treat Casper, not Kathy, with respect.
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