Dementia doesn't mean dumb.

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.



We are much more than friends- that's why marriage is a word that matters.

Thirty years ago gays and lesbians were not so apt to introduce our spouses or partners as such. We were asked if we were "roommates" or "friends" or our obvious relationships were ignored. In fact, looking back, I remember not having the language for how to introduce ourselves- we didn't have the ability to expect respect or recognition. Employment discrimination was widespread, there were no protections for our relationships, and when one partner got sick families routinely swooped in and took the home apart, claiming what they felt they could with no legal standing for the one left behind. We were, in many ways, invisible. There were no real public figures, and in movies and TV we were parodies. In high school I knew public recognition was not a good idea except in small circles,  and in college it was only somewhat better.

 

The problem was that for me, that simply didn't work. I knew who I was, I knew who I was going to be, and if there was nobody to act as a role model, well, then, someone had to step out. I learned that when my dear friend Craig died only a few years after we all graduated. He'd been harassed in school, and he tried to find a place where he could be the talented and loving and slightly different but charming person he was. He could see right through me, and took me under his flaming wing. And then suddenly he was very sick, and then gone- before AIDS was really even named. His mom planned a funeral at a fundamentalist church that condemned gays and lesbians, and his gay friends were not wanted. His death was made public as a sudden illness. I'd just lost the only almost big brother I ever had. And I'd had enough. Craig was president of Key Club. He was president of the fine arts club. He was respected by the Kiwanis in Riverside. He'd made something of himself despite a very tough beginning. And suddenly the thing that made him fight so hard to be independent and make it in this world was being erased. So I called North High School and told them one of their recent bright young graduates had just died. Of AIDS. I called the Kiwanis. I asked them to show up to honor who he was. He deserved to be remembered, not to be hidden like he was a shameful adult.

 

Craig would have revelled in the rainbow flags so open today. He loved Palm Springs and the freedom he found there. He would have happily had the wedding of the year when Prop 8 was finally and forever terminated as the affront to human dignity that it is. He would have cheered when his bestie Pam's daughter graduated from high school last year, and he would have been our best man. Because that was Craig. He believed in the dignity of all people. He loved kids, especially his niece. He was just like everybody else. He told me long ago that eventually things would change for our rainbow community. That we would eventually have respect and lead "boring, normal" lives. I think, looking back, he was both hopeful and afraid of that- where would he put his flaming self when that happened?

 

And Craig came to mind today as I mulled over the day in my car today, with a student who is trying to learn the craft of social work, who hasn't a clue about how much words can and do offend, and what an impact they can have. How much someone can say with just the choice of emphasis, a stumble in a title, and a sense of discomfort that is painfully obvious, if only to the receiver. It's been a few years since high school (Okay, maybe decades), and I have learned some discretion in correcting people. I do, however, stand up and ensure I am heard.

 

"So, when your...ummm... friend was sick she had chemo and surgery?"

 

No, when my late wife was diagnosed with breast cancer she had surgery and then chemo. Terrible, awful chemo. But she fought it, and she won.

 

"Your...ummm..uhhh..friend died from cancer?"

 

No, my wife died, but not from cancer. You heard that capital "W" didn't you? "We were married. She was my wife."

 

"It must be hard to lose a...friend."

 

It is. I miss Mari terribly. I miss Craig. They were friends. But Linda was my wife. Married. Such a concept.

 

"You know, I lost my grandpa to cancer. I was there for parts of it. It was really hard."

 

I really mean it when I say I am sure it was. But there is a difference. In fact, all losses are different experiences. Who did you grow up with? mature with? Expect to see your kids grow up? With every loss all those expectations, from all sides of the spectrum, have a tremendous impact. The key here is that all those losses have a name. A title. A "who was it I just lost and what does it mean for the rest of my life?" kind of pebble in the pond ripple. Sometimes it's a tsunami, sometimes it a ripple we all await and are almost prepared for.

 

A little later... "Your new...friend is sick?" Apparently USC is admitting slow learners these days. "No, my partner is sick. We can't be legally married in this state, but we are partners. She is not my friend (well,, she is, but you know what I mean, right?)" We talk for a bit about the impact of illness on hospice families- the exhaustion of caregivers, the need for better services, the lack of them. She gets that part. I am hopeful. She talks about a friend of hers (whom she does not call her spouse, for the record. She can apparently tell a difference between friendships. No italics needed here.) The friend has cancer. She's worried. I talk about Linda's battle, how she fought it and won. How she was back at work in three days after her first mastectomy, because I could not carry her on my health insurance policy because there were, and are, no Domestic Partnerships in Florida. How she survived seven surgeries, chemo, bone marrow loss, all while working full time. How we would drive her to work when she was too sick to drive just so she would not go on unpaid leave. How very glad I am we are back in California, and that I could put Linda, and now Casper, on my insurance like any spouse should. "But why don't ...ummm. people like your friend qualify for In Home Supportive Services when the time comes?" (That's a program based upon Medi-Cal or Medicaid qualification that pays for in home care). "Because we are partners. She does not qualify. " Then the kicker. That which has resonated all night. Past 2 clients in the evening. Dinner. Paperwork. Kids. "But you aren't really married. Why would your income count?"

 

And that is the kicker. Because we are not really married. We are "Civil Unioned." When you get married the officiant says "Now let me introduce the couple for the first time as ..." There are titles. There is honor. There is dignity. There is applause. There is no title for being "Civil Unioned" or "Domestic Partnered." Worse, calling someone your partner is confusing to others. I have a business partner. In fact, I have two, and they are married. To each other. Talk about confusing introductions! I have partners in crime at work- and I am frequently the ringleader (Imagine that!). Linda was my wife- legally and all the rest. Casper is my wife, but not legally, and I am not about to introduce her as my "Unionater"or my "Civilian."

 

Making marriage equality illegal means those of us - millions of us- in this position face inane and stupid and hurtful conversations every day. In our cars. In doing insurance paperwork. When we rent cars. When we buy houses. When we are introducing ourselves. Making us "special" or different or putting "Marriage equality" in parentheses, as someone from my high school alumni group did just last week as an intentional affront, makes our marriages less than and not equal. It's been a long time since Stonewall. We should not have to come out to say we are married. We should not be in quotes. No family facing hospice should ever feel they have italics around their relationship. No family should feel that ever. Today was like equality exhaustion- how much longer do we have to keep fighting this?

 

And so I am forever grateful for the staff in our office, who let me unwind  before I faced traffic or another patient, and who were more indignant than I had allowed myself to be. "We are your friends Jill. We'll tell her. Casper is who you sleep with, cuddle with, do... yeah, everything with. We are your friends. You do not sleep with your friends. Go home to Casper. Tell her your friends sent you." I owe them. ( I also owe them paperwork and they are such good friends they will not tell...) Those who count respect us. Those who need education- they will get more, until we are done. It might be that we have come a long way, and Craig would be proud of us, but we are not done yet.  

The prayer list

“Do you want to be on the prayer list at church?”

I ask this with trepidation. Casper was very clear when she first met our family through hospice that her faith included angels, heaven, and new life after death, but she was not so keen on the whole sense of God. She was especially not okay with formal church worship. Her family church was Pentecostal, and was not warm and welcoming. It was not open to gays and lesbians. And, most importantly to her, it abandoned her beloved aunt, who raised Casper and her siblings while their parents worked to support a large family, when she faced a terminal cancer diagnosis. Casper saw “church” as hypocrites- dress up on Sunday and forget the flock in real times of need. Her aunt was one of those church ladies who did everything for others, and then they would not help her in the end. As a hospice nurse, Casper saw far too much of that as well.

But our church…well, we are just different. She saw that in action when Linda was sick, and then when she was dying. Our church shows up. We live what we say. Perfect we are not, but colorful we are. All ages. All colors. All genders. All families. We are the church for everyone else. And when stuff happens, folks show up. My mom is out visiting 90 year old shut ins (and she’s closing in on 80). Bette cuts out newspaper articles and remembers to bring them in for members. Extra bounty  from home gardens is shared. Bulletins are recycled. Barbara manages to meet every single new person who walks in our doors. We pray for our sick members and for marriage equality and for justice and our military members. But we are also a tight knit bunch, and when Casper joined the family she was walking into a big group who knew me, and who knew her name and wanted to welcome her. It was a bit much. Picture the lion’s den if you will, especially for someone who was already losing her memory but wasn’t really aware of it yet. “Who is that? Did I meet them before?” And then there were those who were so used to “JillandLinda” all one word, that calling Casper by her name, and not slipping and calling either Casper or me Linda was a long, long process. It still happens. I can joke about it now, but it wasn’t so easy at first. There just is no good way to correct someone and tell them that I am not my beloved but deceased spouse. I have learned to ignore it.

Today we had time to get to church after my mammogram, but we were going to be late. I offered breakfast out. Casper chose church. We snuck in the back, and made it for the sermon, the fellowship, the being there. And although Casper doesn’t sing, she was there. We knew our very best friend had joined the prayer list today, for something we never ever wanted to see happen. And as we sat, Casper looked out at who was there. She saw folks turn and wave, and smile, and welcome her. And she leaned over, and said she wanted to be on the list too. This was part of home now, and for the first time she wanted support. Tomorrow we face another ECT, more trauma, more impact of the way PD has changed our lives. She faces some terrifying moments. And for the first time she wants what is now her church family to be there.

After church Casper found herself greeting those she has come to know, and who she now considers friends and family. She was less in a hurry to leave, although crowds are somewhat scary now, and a little overwhelming. She hugged folks- and Casper is not an openly affectionate person. You learn that lesson too in the South as a lesbian- affection is not to be shown. Our church is an affectionate place, and she has been able to adapt.

I am not one who thinks you have to have faith to have a full life. I am never one to tell someone what their beliefs should be. My family includes most walks of faith, and my friends include more. I mean it when I say I respect them all. But I know my walk through this life, with the rough spots that cannot seem to stop popping up like bad potholes, would have been much tougher without my faith, such as it is. I hold on to my firm belief that Linda left this world for something better and is waiting for me, that in the midst of crisis and chaos there is peace somewhere, and that I cannot possibly be in control of all of it. And I am glad for it. Tonight I will rest a bit more peacefully, even with PD tremors knocking the bed around, because of the slight turn today and because I know my church family is there for all of us, each in their own way. My hope for others facing serious illness is that they have such amazing support, from whatever source it comes. Facing chronic illness or serious illness all alone… I cannot even imagine.

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.

Dementia and Medical Providers 101: It's pretty basic

So today was a pretty educational day. As in, I learned more that I do not like about teaching hospitals and medical providers who do not think before they bark, and they learned what an overbearing overprotective partner I can be. I would call it a draw.

Casper used to be the consummate morning person. I hated that. She could be up at 5am making coffee, ironing clothes, getting stuff together for the day. Sleeping past 5:30 am was a Cardinal sin, and she was not religious. PD has taken it's toll, and now she can't wake before about 9am on a good day. I wake her several times to orient her, and maybe half the time it sticks. Half the time she wakes and has no idea what day or even year it is, much less where I am, which is usually at work halfway across the county.

So today we had to be at Loma Linda University Medical Center at 0720 am. To Casper that would be like waking her while the Easter Bunny is still on late rounds from yesterday. Because she was afraid she would forget, she kept herself up all night. Did I mention PD causes anxiety? Such fun this stuff. If you are a PD family, you know what I mean.

At 0650 Casper was in the car, waiting for me. "Hurry up. We will be late!" My hair is not dry, and I am dressing on the way down the stairs. Not a good idea at my age. Even less a good idea with the dogs and cats barreling down with me. When I am in the car and we are moving, she is not sure she wants to do the treatment we are headed for. I bite my tongue. She's in pain and dry mouthed from being NPO at midnight. I pray she won't refuse when we arrive. It took and act of God and the goddess and lots of promises of Sees Chocolate to get this set up.

That's when the fun starts. Because if I have had to have every medical record faxed, we have already had a four hour appointment with the provider to do history, and I have faxed a summary, why would I possibly expect them to know Casper's history when we arrive? That would be so, I don't know, logical?

So we wait. And wait. Until 8:30am. Really? Why? "We never know the schedule." Then we are taken to the back. To a teeny room. Where we are told Casper has to stay without me. "But I want her here." Casper takes my hand. In public!  "That's not our policy. Patient privacy." There are five other patients in a 10 by 20 room. Spouses cannot hear the information, but the other patients sure can. "You go outside. We will call if she needs you."

They want to do history. They have no idea she has memory loss. I go where I am directed. I mention casually to the receptionist that they are having my spouse sign consents that I have in my possession. That's a cool idea. And that she can't provide history. But that's fine too. She looks more confused than Casper. Two minutes later "You can go back now."

I do get the privacy things. Really I do. And the coolest part is that the surgical center has a private consultation room off the main lobby. But we are not offered that. Back to the teeny overcrowded room. Casper is holding consents. She cannot tell if she has even signed them properly. Absolutely nobody has asked her if she can even see them. In my practice that is the first thing I ask as I present privacy acts and such. Not one person has asked. This is a teaching hospital? "Can you look at these? Are they right?" Her signature is now shaky, not the strong KCasper of before. I miss that strong nurse's hand. I really do.

They take us to a desk by the door. There is no privacy. there is commotion everywhere. Casper looks dazed. My ADHD kids could never cope with this set-up. What are they thinking? The nurse points to a computer screen with tiny font, listing dozens of diseases. "Does anyone in your family have these?" Casper cannot see the screen. I know it. But folks with dementia are so adept at covering losses they will never reveal a weak spot. I watch. No answer. She looks at me. My turn. I answer. The nurse gets irritated. "I asked her." Yes, you did. But you didn't ask if she could see the stupid screen, did you? There is a patient maybe five feet away. the door is opening and closing behind Casper. A nurse is on the phone. The stapler is in use over Casper's shoulder. Way cool set up. Did I mention she has PD and dementia? And that you have all of her records? I am suddenly glad I took my blood pressure meds.

We get through that nonsense. It clearly does not really matter, because as I watch the nurse record the info I see it is at least 50% wrong. The best part is when she asks about substance abuse, and I give her the information. Remember, they are all about privacy: "Her mama drank?" at 100 decibels. I am contemplating how to make a rolling chair roll through the door with the nurse still occupying it. She starts the Mini Mental Status Exam. And she does it badly. I do these for a living. She does it with phones, and staplers, and doors, and patients nearby. Casper does okay until we get to the county where we were. She's stumped. "You don't know what county you are in?" May I just say that is NOT in the correct responses for that exam? Can you imagine being talked to that way in a crowded room before a medical procedure? I pray Casper does not walk out. I could not blame her if she did.

Then I am told to leave again, before it is done. I was okay, and now HIPPA is in the way. I am not believing it. I am promised they will come get me as soon as Casper is in a bed. It's now more than 2 hours later, and she is still being processed in. We can sign a patient on to hospice faster than this nonsense.

So I sit. I remember the look on Casper's face as I leave. She was afraid. And I sit. And I ask the receptionist, who is chatting with the fish tank people and other staff, and then disappears. Finally I text, and Casper responds asking where i was- the staff said they called and spoke to the receptionist. I am a storm trooper. I head to the back, and ask the staff who they called. "The receptionist..." Really- she's not there. She's in the back, chatting. They gulp. They talked to her, they left a message, they...

I don't care. I made my point. I sit with Casper, and the anesthesiologist appears almost immediately. I am glad I showed up without an invitation. He has NO records. None. I fill him in. He has no idea she has memory loss or PD or has had strokes. This could have gone badly. He runs off to check the computer, and to read her records. They take her in. They promise to come find me.

Thirty minutes later I go find her. I am told I am too early. They will call. But again, no receptionist. Peachy. Five minutes later"Go get your car. They will take you back and fill you in."

I park in the loading zone, and I am handed a discharge sheet. they have, of course, reviewed it with someone who has just come out of general anesthesia, and have no time for me. The return appointment? "We will call you."

I get Casper her long overdue meds. She rests. Then half way home "Why didn't I know what county it was?" Memory loss be damned- she remembers judgmental comments and the hurt it causes to her psyche.  And I thank my lucky stars that I am already half way home...

The lesson?
If you are treating a patient with memory loss or dementia:

• They need preparation.
• They need clear instructions.
• The instructions need to match the reality: we were told I would stay with her and be an integral part of the process until she was taken to the treatment room. The reality was I was not welcome and Casper was unprepared for being alone in a strange place.
• Minimal wait times work better
• Patients need help with history without being made to feel they are being helped
• Family or support need to be next to the patient, especially when awaiting a stressful moment or after anesthesia for reorientation.
• If you are going to ask personal questions, a private room is indicated.
• Noting loudly that someone cannot recall something is a no-no. Always.