And then it was time for hospice

The last two weeks have flown by- between sleep deprivation and rapid changes in Casper there hasn't been time to think it all out. much less write it down.

While I do work as a hospice medical social worker, and love my work, it usually doesn't become the theme of my day and night. Last week, however, it was everywhere. I was scheduled to give a presentation on Tuesday at a local Parkinson's support group about hospice and safety issues, especially choking and CPR. It was already morphing into a Hospice 101 plus advanced directives and why you need them. The nurse who was scheduled to do it with me was well prepared to talk about issues specific to Parkinson's and all patients who are debilitated. Who knew that every wheelchair except transfer chairs have sides that come off just in case someone is choking and needs assistance? I've used wheelchairs at home and work for years- and I had no idea!

Before we could get to Tuesday we had a weekend that included six falls. Confusion. Delusions and hallucinations. Agitation at night that kept us both up all night every single night. Casper then slept all day, while I found every Starbucks and Coffee Bean as I traveled the county. She wanted to know why I wasn't home from work at noon; why I was leaving for work at 7pm- because days and nights no longer made sense. The sun and moon were useless in cuing her in to the time of day. She lost the ability to use utensils somewhere in the midst of it, but hated me having to feed her. We switched to finger foods. Trader Joe's became my friend as I tried to find things to make that did not require any brain cells or energy. (Best idea- grilled cheese sandwiches cut into bites. Lots of butter to make them soft).

On Saturday she fell multiple times. On Sunday I took time out for me and went to church. I left Kerry at home with Casper, and a friend who is a nurse to come and sit with her. I needed that time, and time with a friend for lunch and some fun at a bridal expo. And then it started. "Mom, Casper fell. She's on the floor." "Jill, even though she made me promise not to tell, she's on the floor under the desk. She said her mom dropped off Easter eggs to color and can't find them. Since you are the wrong Jill I am telling you." "Is she ok?" "Yep, just confused. She's in bed. She's safe." All by text while sitting in church listening to a sermon with a theme I vaguely remember as having to do with coping with bad things happening.

Executive decision- stick with the plans and have a break. Nothing I said or did would change it at that point. I kept the phone close, but I didn't go home. Celeste and I cruised the Mission Inn and sampled, looked around, took pictures, and put together plans for her wedding and for mine to Casper. Our wedding was now set forward from December to November. I was trying to keep it happy and a celebration of the hard work of defeating Prop 8 and the legal rights we finally have. It was fun seeing Celeste planning her big event for next year. It was harder telling vendors why we need to move ours forward. Casper was asleep and under watchful eyes.

The rest of weekend was a blur. I needed to do paperwork. I ended up acting as Casper's captor to keep her safe. She wanted a shower to show me she could, and we both almost fell when she could not follow commands. I almost dropped her getting her off the toilet in a full body lift. This was going to be too much for me in a very short time. I called her family.

Monday I went to our doctor's office at 8am. "I need a shower chair. I need a commode with handles for the toilet." "We can see you a week from Wednesday." "I need them now." Really- a week and a half away? "We don't order unless you see the doctor." "I can't get her down the stairs right now." "I don't know what to tell you. That's his policy." This from a doc who actually works at a retirement community once a week. I had evil thoughts about his retirement and ability to ambulate...

And then suddenly there was hospice. It helps when you work there. It helped with Linda, and it helped with Casper. I walked in arguing on the phone with the insurance company about the medical equipment (DME) and the need to an appointment, and someone overheard me. In a matter of moments paperwork was being done, nurses were called, and authorizations were being forced out of the same doc who would not do DME a few minutes before. In a matter of hours I was at home telling Casper that hospice was coming.

And she had no idea what that meant... Casper who was a hospice nurse sat through the paperwork as I signed it. She can't hold a pen now, or write. She knew every person who would be coming. She answered very clearly the questions about a Do Not Resuscitate Order (DNR) and life sustaining measures. No CPR. No feeding by artificial means. No fluids. Pain management only. No hospitals. We have a living will, and I knew how she felt, but it's very different when the staff who will be there for the end of your life and asking them again.

As I waited for the DME to arrive (Oxygen, suction, commodes, shower chair) Casper woke up again. She saw the white folder. She'd filled out dozens in her career for other people. "Am I on Hospice?" "Yes baby, you are. It's time. Are you ok?" Stupid question of the year. Neither of us were actually okay. But both of us knew that this was necessary. "I know the routine. It's ok."

Since then there have been multiple new realizations for Casper that hospice is in our life for her this time. She's trying to fight back. We've had some much needed conversations. But it's time. The wedding is now October 12th, and she realized why. Her brother Jay is coming Tuesday to love with us. Her sister Sandy will be here soon for the wedding and an extended stay.

Casper and I are left with the hope that this will not be as fast as is expected, but a fervent prayer that this not become the potential for an extended state of unresponsiveness. I am keeping a favorite nurse's explanation to another patient in mind: "You might not want this, but you didn't want to be sick either. We have to deal with what is, not what we want. It's really that simple."

The First Hospice Talk

Last night was a tough one for us. Two more falls- both while I was still at work. Our daughter Chloe pulled Casper off the floor and back into bed. Confusion, especially with another hit on the head while recovering from a fall. Then a couple of hours of pure calm lucidity- and devastating discussions. I knew they were coming, but I was so not ready.

"I don't want to keep going if it's going to be like this." "Tell the doctor to take me out." "I hate being an invalid. You didn't deserve this a second time Jill, you should not have to go through this. I promised to take care of you."

All true. All heartbreaking to hear. All our newest reality. I really hate Parkinson's and Lewy Body at least as much as breast cancer and pulmonary fibrosis. I am past asking "why." I am now simply resigned to the fact that some diseases are just evil incarnate, and those in their path have to find a way to survive. It's not like there are other options. It is what it is and will continue to be. Survive and get past it. Getting off is not a choice.

The reality is this is not fair to either of us, our kids, our families, our friends. The reality is also that we cannot change it. One of my favorite nurses with whom I am honored to work  in hospice was talking to a patient the other week, and the patient did not want to accept that she had ot move in with family or hire a caregiver. The patient was having neither- she wanted it her way. The nurse said "I am sure you didn't want xyz cancer either, but you have it, and we have to deal with it. It's not like we have a choice." It's so true- saying "no" is for Red Ribbon Week, not death and dying. That particular patient is actually dying this week. I saw her today. What we want and what reality in real life is are often two very different things.

And so yesterday I met with our doctor, who has known Casper for years. He remembers her as a busy, self assured, smart nurse with a smart mouth and a good head on her shoulders he could count on. He has seen her horrific decline. I described what had occurred that week, up to that point, and her loss of functioning. He told me we had to move our wedding. Then today I provided an update. That was when he said what I knew was coming but did not want in any way to hear- "She's qualified for hospice now."

Crap. Really. When Linda was referred to hospice it was because I was begging for help, with a doc reluctant to admit nothing more could be done. This time it was a blanket "what are you waiting for?" Hmmm, let's think. They are exactly the same age. Both married to me. She was active and promised to stay by my side for a long long time. I even made Casper promise not to die soon when we first dated. I had just lost Linda after 23 years. I don't like widowhood. I don't like saying goodbye. And I don't want to tell our oldest child, who calls Casper her Buddy, that we are here again so soon.

But we are. I spent the whole day today helping families getting ready to say goodbye to loved ones who are actively dying. Their limbs are mottling, they have apnea, they are no longer responsive. Some were rattling a bit. (when you are dying you no longer swallow, so fluid can settle in your throat that you are unaware of  and it makes an ugly rattle with your vocal chords. Some call it a "death rattle." It's a physiological fact of life usually obliterated in hospitals with suction.) To me that's normal life. Sad. Necessary. Normal. I have a role in it, and usually I am pretty good at it, providing support, education, crisis intervention if needed. Laughter lots of the time. That's when I tell kids to admit to their parents all the bad stuff they never admitted to as teens. To play the music they loved. To laugh at memories. I even got to pick on our chaplain, which is a sport for me. (Yes, I have an evil twin, and we share space. I am not overweight. There are two of us in there).

I eventually made it home after an evening of playing dinosaurs with a charming young counseling client. I made myself focus. Hard. When I got home Casper could actually eat her dinner, which I chose so it could be eaten with fingers. Last night she resorted to fingers because a fork was almost a mystery to her. Then we had Skinny Cow bars. Her favorite. I finally got that figured out too. A line of paper towels covering the pillow and under her face, and a roll under the stick so she could hold it. It shook and rattled. I wiped her face. But tonight she got to eat with some independence. Victory!

"what's tomorrow?' Earlier today it was Friday (I love Casper World. It is always Friday and Saturday.). Tomorrow is X rays and labs. "But I just had an injection.' Huh? What?YOU need your blood drawn and Dr. Mall needs X Rays after your falls. No excuses this time." "Okay." What? Since when?

"Dr. Mall and I talked today." Eyebrows raised. "He says you are qualified for signing on to care." Angry eyes. "So you are sending me away?" Crap. "No- to hospice. Here. At home. With him." Silence.... Then "I knew that was coming." Really? "I am not ready. But I will be soon." I breathe again. "So what should I do with that?" "Tell him not yet. But I knew it was coming. And I will say okay. Soon."

Her hand found mine. Squeezing. Tight. "You won't leave me?" Nope, not a chance. "We do this together."  Yes, we do.

"I think this is speeding up."

Parkinson's and Lewy Body Dementia are strange creatures. One moment they are quiet, the next they are stalking you and acting like bad toddlers, taking over your life in every way. No time outs and no nap time. At least with toddlers there is a schedule of sorts. You know that if you push through naptime you will pay. With PD and LBD you never know who thought you missed naptime and has decided it's time for a tantrum.

In the last month we have been struggling with an upswing around here. Casper is listing sideways, falling almost every day, wall walking... you name it, we have the symptoms. She can't sit up in bed on her own anymore- she lists, and falls over. She tries to get up on her own, and sometimes she can with a series of sort of micro jerks with her hand as she rises like a leaning scaffold being righted. Most of the time she simply puts her hand up with a silent request to be pulled up. If I am not home she just stays where she is- for hours. Three years ago she could use her knees better than I could, sit cross legged and change the light bulbs in our ceiling fan over our bed by balancing on the bed. Now she can't tie her shoes most of the time.

Yesterday she fell twice. I have her walker next to the bed, but she will not use it. I think it would be a sign of defeat in her mind. She knows better- I've seen her tell patients they had to use their walkers or they would be tired out and unsafe. Today she fell in the five minutes I left the room to feed our cats and dogs early in the morning. She lost her footing, hit the bed footboard, and slid down it with her back. Road rash would be better on a Harley crash than Casper's back today. And after all that? Two near near crashes when she got up without help and pushed the walker away from the bed so she could walk on her own.

As a medical social worker I have witnessed caregivers struggling with so many issues. One of the biggest is the balance between independence and safety. With Linda I had to fight to make her wear her oxygen in public and to use her walker or wheelchair. She assumed that people who saw her blamed her for her illness. That was cruelly reinforced by the numbers of complete strangers we met over her last three years who would ask "So you smoked and have emphysema?" Let me note for the record Linda hated smoking. Truly hated it. Her parents both smoked, as did her brothers. She hated the smell, the yellow walls, the ash, the butts, and she felt it may have contributed to her later diagnosis with breast cancer. So being asked if she had caused her own terminal condition (why people have a need to blame anyone when they are clearly struggling is beyond me- does it make them feel superior? Or less vulnerable?) made her absolutely resistant to using the equipment that made her life easier. She needed that stuff so breathe at even 80% of normal, and to be able to make it into a mall or theater. But she wouldn't. There were lots of times I would have to make a quick trek back to the car to grab it because she was so short of breath we could not go any further.

And so here I am again. Casper refuses to be seen using DME (durable medical equipment in English). She knows she's too tired to go very far (that's the LBD effect) and that she could fall (That's the PD in action.) But the wheelchair stays in the car, the walker in the bedroom where I dust it occasionally. As we were walking into Kohl's yesterday I watched her struggling to simply move her feet. Once again "I could go get the chair. We could stay longer. You won't hurt so much." Timing is everything. Just as I said it I followed Casper's eyes to an elderly woman who clearly had PD. She was shaking. She was tiny. She was having to have her walker pulled by her daughter, and her oxygen line went from her nose to the walker basket. Ruh Roh... Casper looked at her for a bit while pretending to look at watches (they were pink and glittery- no way were they something she wanted). Then she said "The time for the wheelchair is coming soon enough. It will be here before you know it."... Wait- what?

Did you just say that to me? Then "This is speeding up. I can feel it. I'm losing more every day." We walked quietly. I pulled her upright a couple of times. We found the sheets. Standing in line was too much- she had to lean on the counter. "There's a chair." "No, I've got it." We struggle to the car, and when we get home Casper can't figure out how to open the door. "Just a minute- it's been misbehaving- I'll get you out." There is no point in telling someone who is already feeling so lost that they have forgotten how door handles work.

And now we have just gotten back from Fairmount Park, and Casper is once again asleep. She awakened as I was blogging and wandered in. She asked if I wanted to go for a walk by the water. We live in Riverside. We have no water. I tried to figure it out without causing pain or upset. "Do you want to go to the park? Or the National Cemetery? We can feed the ducks." (I know- sounds morbid. But I like cemeteries.) "If not a lake, do you want to drive down to the beach?" Casper wasn't sure. "I thought there was water nearby." Big Bear, where we vacationed this summer? North Carolina? Hawaii? Laguna? Sometimes you have to try to follow the thought process you are hearing to figure out what's being said. So we head to the park, and it's hot. Blue blazes hot. The water is green. The bugs- oh, the bugs. But as we walk, with Casper leaning heavily and walking with less and less certainty, she finds people smiling at her. Saying hello. Little old ladies. A cute Muslim family out on scooters. An adorable little girls with dozens of braids fishing with her dad. Casper stumbled and needed to rest. Several folks stopped to offer help. She told me to get her home or we would need help- she could no longer walk. I offered to get the wheelchair, and she said she was afraid she would not get up if I sat her down to go get it. Alone is not a good feeling. It wasn't at that moment.

So we are home. She is confused, hearing voices (that's the LBD acting up) and she knows she's confused. I'm close by. The kids went out to dinner for Sunday supper. And we have a new normal again. Soon, very soon, that DME will join our normal. We will add cup holders and a horn, and lights at Christmas, and we will make the very best of this.

And tomorrow may require calling out for a while to actually go to the beach. Because sometimes you just have to have a nice day. And Laguna is handicap accessible!

                                 Casper when we really were by the water. Hawaii, January 2013.

Some facts you may not know about Parkinson's Disease- Please share

Parkinson's is a notoriously difficult disease to diagnose. In my experience with Casper, it's a function of doctor's not listening and having their minds already made up about a diagnosis before they hear all of the information, and doctors not knowing what they are seeing. It's mixed up with impressions they turn into facts before doing tests, and then not doing tests because they have a diagnosis they are going to work from. And it's complicated by doctors taking the diagnosis from one doctor and assuming it must be correct- because a fellow specialist could not possibly be mistaken.

The problem with that is Parkinson's need treatment early, not late.in many cases, by the time a diagnosis is made it's years into the disease and the brain has lost almost all the dopamine it will ever have. That loss is irreversible. Meds only work in earlier stages in some patients- a late diagnosis means no treatment will work at all. And with Lewy Body Disease it means permanent loss of cognition that might have been slowed, even a little, with an earlier diagnosis. Those who are not diagnosed early and correctly are never going to make up for lost time. It's not like chemo you can make stronger to battle a tumor- it a brain that is disintegrating. You can't sew it back together or medicate it back to "normal." You can't remove Lewy Bodies that proliferate.

So here are the things we saw and experienced, and some other things that are early warning signs of Parkinson's:

Casper before she lost her smile

• Neck pain, especially in women. Casper had degenerative joint disease, and was telling doctors years ago that her neck hurt. Our doctor did multiple scans looking for a problem. Here's the issue: you can't see Parkinson's. The pain is from battling early tremors that the patient, in this case Casper, does not even recognize are occurring. She unconsciously controlled them with adding tension to her neck and shoulders. Voila! Neck pain.
• Mid day exhaustion. That's a hallmark of Lewy Body Disease, and also a PD symptom. In Lewy Body it's a function of the illness. In PD it's a function of being tired of battling those pesky tremors. In any case nobody should be allowed to be so tired they have to sleep in the middle of the day. If they do and all the labs are normal- look again. And ask a LOT of questions. And ask the family. Sometimes patients are not great historians or feel stupid admitting they are napping.
• Memory loss. I know- we all have "senior moments" and are embarrassed that menopause might be affecting us. But if your loved one can't tell you what happened that day, or forgets consistently what day or month or year it is, listen. Very carefully. Folks who recognize that they are forgetting things learn creative ways to compensate. Most of us can and do remember what day and date and year it is. Put the calendar and phone away, then ask casually what day it is. Parkinson's, and especially Lewy Body, steals memory at a frightening pace sometimes.
• Shuffling. I noticed it in Casper long before her diagnosis. We came home form a trip to Texas, which had multiple moments where she was not clear about her memory, and I was behind her in the walk to the parking lot. Her foot dragged with about every other step. I silenced myself (that is almost impossible for me) and watched. After about 200 yards I finally mentioned it. She responded that her shoe must not be on right. I watched the rest of the night, and we saw the doctor two days later. That was when we finally started moving toward the right diagnosis. Shuffling even a doc can understand.
• Loss of expression. The Casper I fell in love with had an imp of a smile. It said "I love you" louder than anything else. Her eyes locked on me and she beamed at me. Slowly, imperceptibly, that went away. Almost before I recognized it. She was busy being misdiagnosed as bipolar or depressed, but really what it was we were seeing was "the mask." The connection between emotion and facial muscles is stolen by PD, and the patient assumes almost a hard expression. It was useful for scaring boyfriends of our three girls, but they were actually the ones to mention it to me. I had acclimated to it. One look back at pictures, and it was instantly clear. She had no emotion on her face.
• Depression.  This is a fun one. PD creates depression. The loss of dopamine, a vital brain component, creates depression all by itself. Add in chronic and unrelenting pain from tremors and later from falls, the loss of independence, the loss of work, regular activities, driving- all the things that make us "us"- who wouldn't be depressed? And yet... we faced one doc after another who attributed all of the symptoms to depression. Just treat it they said. Get her stable- it will all go away. Depression causes memory issues- it's not her brain- it's depression! Ummm.. no. It's PD. And the comorbid depression that is part and parcel of PD. (I love that word- comorbidity).We treated depression and bipolar. And you know what? It was neither. It's PD with Lewy Body. And they missed the window to do active treatment as a result. Yes, we are using a lot of meds, and battling the depression, but it was not causing the sleepiness, the memory loss, the shuffling, the pain- it was a result of PD. Just like all of those were. Undiagnosed PD. My favorite doc was the neuro who told us it was "all in her head." It was- millions of LBD creatures, like tiny Tribbles, draining the dopamine with a fire hose, and laughing as one doc after another blamed Casper for her condition.
• Loss of smell. Who knew/ Who would notice their sense of smell going away? Casper used to be a great cook. Everything Southern was her forte. Biscuits, fried everything, pork chops, coleslaw my youngest begs for... She loved it. Over time, her appetite changed. I noticed that, but not the reason for it. We like our food because of the ability to smell it as we eat. Casper could no longer smell, but really did not know it. She smelled stuff that was not real- smoke, fire, burning, perfume- but real smells were not there. I was awakened multiple times to look for fires that did not exist. I assumed it was a bad dream. It was really the Lewy Bodies and their psychotic features visiting in the night. That plus the loss of smell from the PD. The perfect storm. And I was so tired I didn't notice it. What I should have done was written it down and told the doctor. My bad. Now I kkeep a written log on my computer. Every visit has a current med list, lab results, and symptoms that have occurred with the dates. Do not ignore me- I will make you listen and put it in the medical record!
• Trouble sleeping. Again- "It's part of the change of life." Really? When your wife was menopausal did she hit you and scream in her sleep? Did you build a pillow wall to protect yourself? Did you go to work so tired you needed Visine to look like you were not on a bender last night? There is an evil known as Rapid Eye Movement Sleep Disorder and its more evil twin Rapid Eye Movement Sleep Behavioral Disorder. Google them. They are ugly. The sleeping partner may awaken as they are being battered. Or to screaming that rivals Alfred Hitchcock's finest. Or kicking. Or Restless Leg Syndrome that resembles punting practice.PD does not cause the insomnia that accompanies stress or menopause (and believe me- I so know those symptoms!)- It causes chaos in your bedroom. Night after night. Despite sleeper meds and pillows and all. Your loved one will sleep but awaken exhausted and sore. You will not sleep at all and will go to work exhausted and bruised. That is PD. Do NOT let a doctor tell you this is anywhere near normal. Smart phones and video tell the tale.
• Constipation. Okay, I know. Gross. But really- you do not change your diet and suddenly you are in a really bad way. You are using every OTC in the pharmacy. You finally get things moving and suddenly you need a diaper because things move and you can't walk that fast...It's a real issue. It causes pain. not mild discomfort. It's not "oh, I need some veggies." This is serious. And chronic. And came out of nowhere. And you are too embarrassed to tell your doc, because he's going to assume you are of a certain age and need prune juice. Tell him what it is really like, and how often. The regimen you have tried without success. This is indeed PD. We had no less than three neuros tell us that was not a brain related issue. They were wrong. Very, very wrong.
• Soft or low voice. You live with someone long enough- you acclimate. If they start to talk more softly, what do you do? You listen better. you pay attention more. Do you notice that their speech has changed? Probably not. Casper was almost to a whisper. But she was sleeping more, moving less- I rationalized that she was used to quiet and I was too loud and rambunctious. I usually am! This is important folks- if you are straining to hear someone- something is wrong.
• Handwriting changes. Casper had clear and beautiful handwriting. I never have, our staff tell me I am using my own font! Suddenly, she was needing help spelling words and getting letters in order and the letters were tinier and tinier. That is classic PD. And nobody heard us. Not until the final; doc, who we still see today.

There are many more- but these will tell you some of what to look for. Some tips:

1. Write it down! All of it!
2. Go with your loved one to MD appointments. Let them do the talking- then add your observations.  Bring a copy for the record.
3. Take notes at appointments.
4. Keep current- ask for tests. Ask about meds. You are in charge!
5. Insist that the doc justify any diagnosis- and provide the research.