“It was the smell of the sage,” my mother told me twenty-five years ago. “I was in a place, like by the lake where I would hunt ducks with my Dad when I was a kid. It was dawn and the fog was so thick I couldn’t see through it. But I knew I was safe there. It was very safe. I could feel the sand under my boots as I walked toward the water.

“I could smell everything so clearly. Everything in the woods, the sage. The sage smelled so good. I knew if I could just get to the water…”

But that was not really what was happening. What was really happening was my mother was moments away from death, an accidental overdose of painkillers as she was coming out of a surgery. She was so tiny. And the dose was too great for her little body. We all stood outside her room as the hospital staff barreled into her room with their paddles and probes and beeping monitors. Screaming her name. Trying to get a response.

“People kept calling my name. It was annoying me,” my mother recalled. “I knew if I could just get to the water, something amazing was going to happen. The fog opened up, and I could see in front of me. The lake, was magnificent.”

She didn’t make it into the water. Twenty-five years ago medical staff yanked my mother away from the shore, and she came back to us.

Early this morning, before dawn, my mother, Veraine Alcyne Harrington Muñiz, stepped on to her sand, walked bravely and earnestly through the breaking fog, the smell of the sage surrounding her in every breath she took, and stepped gloriously into her magnificent lake. And she didn’t look back.

Thanks for everything, Mom. 

Red plastic drinking glasses are kept in the second cupboard to the left at my mother’s home. Checkered coffee mugs with cows on them are in the corner. Silverware is in the center drawer. I know this by heart now. I have spent the majority of the last five days there, some times morning through late night. And I have gotten comfortable with helping myself to the kitchen.

Wednesday I got “the call” to come say good bye, so my dog went to the kennel, my kid went to the neighbor’s, and I went to my mother’s home. And sat with my family. And waited. Many things have happened. We said lots of goodbyes and thank yous. The staff stopped in many times to hug us and tell us it has been an honor to care for our mother, and to show us their scars where she bit or scratched the shit out of them. We told stories and sang dozens and dozens of songs. No one acted like a jerk. We drank over a fifth of liquor and a couple sixes of hard cider. We ate chips and other crap. And waited. We cuddled her, and held her hand, and told her she was beautiful. So did the staff. They got in bed with her and held her while we all gathered in her room, the temperature in there becoming stifling and suffocating as we all packed in there, afraid to walk away. We learned to dress in layers as we waited.

She struggled to remember how to swallow, so giving her drugs orally was a horrible thing to witness. Then her drugs were given rectally, and that was even more horrific. “I’d rather just die than have anything stuck in my butt,” her nurse told us. So we decided to stop everything except the morphine, including the anti-seizure medicine. Then we waited for her to have a seizure. It didn’t come. It may.

She perked up and inched away from the edge of death, and had moments where she made eye contact and attempted to smile. She was angry and frowned. She made nonsensical sounds and we wondered if she would say anything important. “Oh yeah,” she said this morning as I stroked her hair. She trembled. We sat and watched. We became exhausted. We stopped singing and telling stories.

I came home.

This is a weird spot to be in. This waiting. I do not really have words for this.

So I am going to share a story about something that happened last summer that I did not think was funny at the time. But I kind of do now.

I got to work one morning and found a text from my sister in law, telling me that everyone was headed to the ER because Mom had either had a heart attack or a stroke. Of course I left right away to go see her, but on the way I stopped at home and got my guitar because I figured if this helped, I’d just keep playing. Maybe even play her out of her journey.

It’s an hour and a half from my job to the hospital. Plenty of time to fret and worry and try to make child care plans and find someone to watch the dog in case I was going to be gone a long time. Plenty of time to talk on the phone with family and find out my mother only had a seizure, not a heart attack. So that was good. But I knew her brain would be extra scrambled for a while afterward, so I wasn’t sure what I would find when I got there.

The ER in my hometown is quite a production. You have to go through a metal detector and then a concierge meets you at the door and escorts you where you need to go. I guess this is in response to an incident a few years ago where someone walked in and stabbed someone in the ER, which I still maintain is an excellent place to be stabbed. If you need to be stabbed, the ER is where to have it done.

So my guitar goes through the metal detector, and so do I, and the concierge meets me and takes me just around the corner to a room across from the nurse’s station where my mother is. She’s in this wild state of extra scramble plus pleasant plus pissed as hell, and she’s trying to escape the bed she is laying in. But I pulled out my guitar and start playing, and this works. Ok. She settles down. All of my family members slowly start leaving for a short time because they all had something to deal with, and the music is buying us some time.

Eventually my mother starts to get bored and wants to escape again, so I keep playing and singing while trying to operate the hospital bed with my feet to trap her. She’s scooting, like a little girl, or a dog across the rug, digging her heels into the bed and pulling her butt towards the edge and towards freedom. I’m on one foot trying the balance and keep the song going and work the bed. Bang, I finally tap the right button and the foot of the bed goes up, her head goes down, and now she can’t get out. Which is good, but also is making her more pissed. I kept playing.

She needed more anti-seizure medicine in her system, but you couldn’t tell her that and have her understand, so a nurse came in with a tablet sprinkled into Jello. I’m in the ER playing and playing and the nurse is dancing and trying to get the Jello in the extra scrambled pissed off dementia patient, and this only partially works. So they closed the curtain at the foot of mom’s bed, and after a few seconds a male nurse flings the curtain back and stands there like TA-DA!! Mom LOVES this. She reaches for him, smiles with an open mouth, and the other nurse shovels the Jello in. He disappears. He reappears, and we do this about a half dozen times more. Because there’s always room for Jello. By the time we were done we were all laughing.

Until the smell started. You know that smell. You know where I am going with this.

She needed to be cleaned up, but this made her mad all over again and even the Male Nurse Revue Show wasn’t squelching the anger. I was at her head, singing, playing, on and on and on, and the nurses are trying to deal with the mess and of course eventually they got it. But in the melee, while she was wiggling around cursing, she somehow swung around and jammed her fingers in my mouth. It was like a cobra strike. Like where did that come from and how did we get here???

“I wonder where your hand has been, Mom,” I said, and caught the nurse’s face of grossed out concern, a solid “Yuck” burned into her forehead. I stopped playing and got a handful of anti bacterial soap and washed my mouth out in the sink of the ER, my guitar slung over my back like some kind of a bad ass with a mouth full of nasty.

And the nurses left. Mom and I were alone again, me playing and playing and the nurses at their station dancing a little as they worked. I had run out of material and was just making shit up, songs about nurses working long hours and ghastly ER injuries. My family started to work its way back in her room, and we got ready for her release so she could go back to her facility. Of course the paperwork takes longer than you ever want, especially with someone who has no idea why they are there and are only making extra scrambled escape plans.

Mom was happy for the ride in the wheelchair as they released her, and when we reached the entryway to the hospital parking structure she was ready to get the F out of there. But my Dad, who was sent to get the car, was not there as planned. So up she goes, or attempts to go, as my sister and the nurse try to keep her down in the wheelchair. Mom is having none of this so I pull my guitar out again, and start playing again to try to settle her down. People are walking into that ER entryway after having some sort of genuine trauma and are met with our wacky family filling that small glassed in space with some crazy acoustic dance party.

Mom got in Dad’s car and they headed back to the facility. My sister and I went for shots of tequila, me sipping it and holding it, deliberately swishing it over every surface in my violated mouth. We got a phone call at some point from my dad that he has decided to take Mom out to lunch on the way back, and of course this is a terrible idea for many reasons. So my sister and I leave the bar, find our parents at the restaurant, and walk into to what looks like a lunch explosion. Food everywhere, her trying to escape their booth, almost every kind of chaos you can imagine except for the doodie part because that happened just a short time previous. “Dad,” I ask, “why are you here? You have to take her back now.” Ok, ok. We got our parents out of there and got my mother back to the home where they welcome her and were worried about her. She was safe again.

And then I went home. Because I was tired. And I had more tequila when I got there. And I did not think this day was funny. But now I guess I kind of do.

Dementia is a disease centered around metrics. How long, how much, how many. How long will my mother remember me. How much medicine is effective without being detrimental or just pointless. How many years have we been doing this. Dementia is also about time. They even have this little test they give you when you start to lose your mind where you are basically given an analog clock with no hands and you are asked to write in the time. Many years ago my mother flunked this one.

After my mother’s time in the geri psych, she moved back to her adult foster care and brought with her the kit of psychotropic drugs to fight off what we have been calling Evil Twin. They make her more pleasant. They will also make her die faster. Last week when I saw her she was sitting in the shared living room smiling, looking me right in the eyes, trying to mutter along as I sang to her. She wanted to hold my hand, and when I took hers and kissed it, she spoke clearly for the first time in a long time – “Oh thank you.” How long had it been since we connected like that. I don’t know. I stayed with her a long time, played every song I could, and the other residents turned the volume off the Golden Girls marathon on the tv so they could listen along.

My mother’s meds are adjusted and tweaked constantly, as Hospice, and Mom’s geriatrician, and the AFC do what they can to make her as comfortable as possible. Lately this has not been easy. Her knees are causing her tremendous pain, and she shouts any time one of the care workers comes near her legs. How many days until the pain meds kick in. We are told two, maybe three.

Fluid has been a problem too, as it collects in her hands and feet as a side effect of one of the drugs that keep Evil Twin at bay. How much of that medicine will keep her pleasant and for how long. That’s a juggling act.

We are in a waiting and watching stage now. The anticipation is exhaustive. The nurse who runs the AFC looks at my mother so lovingly, so adoringly, and tells us Mom is one of her all time favorites. She hung twinky blinky lights and ornaments on the ceiling above my mother’s bed. She also told us she didn’t think Mom would make it to Christmas. How many days until Christmas. As of today it is 5. The last time I saw my mother she was so present and connected, and I thought nah, she’ll rally. She’s like that. But how much is enough. Only my mother gets to decide that.

When I came to see my mother today she looked like one of the many other residents that I could not bear to look at. The ones who have been propped up in their beds, wearing that gaunt, distant face. The ones who’s rooms I would glance into but pass by without really looking, for fear of what I would see. My mother looked like her body was working very hard to get ready for something very important, and necessary.

How many songs did I make it through today before the tears and tusks of snot choked me and forced me to stop. That one I have an answer to. Zero.

There is little sign in the elevator of the psychiatric hospital that says “High elopement rate on Geri Psych,” and underneath it a clip art STOP sign. They are serious about this elevator. You can not just push the button and get on and go. You have to pick up a phone in the lobby and tell an operator where you want to go, and they will send the elevator down for you. The buttons don’t work if you push them from the outside. This, I’m sure, is because of the high elopement rate. It sounds so romantic and campy, like you and I will steal away, and not tell anyone, and get in this elevator, and leave this psychiatric hospital, and be in love, and get married, and be happy. We will elope. We will experience elopement. 

No one is eloping out of here like that. The windows are protected in a serious way that made me feel exhausted just trying to imagine how someone would try to bust out of them. The people glassed into the nurse’s station are serious too. I figured that our quickly when I asked if I could bring my guitar in to play for my mother, and had to answer their barrage of questions. There are many security pieces in place to keep the geriatric patients from hurting themselves. From eloping. I couldn’t help but admire the strategy of it all, and how it paid respect to how crafty you could be if you really put your mind to it. Even if you were old. Even if you had dementia.

The geriatric psych ward is where my mother lives now. She won’t stay there. She was moved there after falling at her foster care, again, and after being violent, again, and again, and again, until she finally was unmanageable. It was easy for us to blame her first facility when she acted out there. But we are facing another eviction, and it has become clear to us that when she moved out of the first facility, she took her Alzheimer’s demons with her.  And so she is in the geri psych where they are trying different cocktails of psychotropic drugs to control her moods, and her violence, and her seizures. The director of her current home told my sister “Of course!” they would take her back, IF she is properly medicated. We have no other choices. This was discussed as we met as a family with her geriatrician, who told us we are definitely at End Stage now. This is where we are at. We are under that big tack in the map of this journey that says You Are Here. The journey, now much shorter.

We met with the Hospice person yesterday who detailed for us how important it is to stop thinking about long term, and commit to what is right here, right now. It won’t matter if the medicine she is on causes liver problems down the road, if it makes her more comfortable today, that is what we need to do. Strawberry ice cream for breakfast? Yes. Ice cream all day? Yes, she can absolutely have that. And as she gave that example I remembered how for years I had warts on my finger tips as a kid, and after the doctors would burn them off my mother would buy me Dove bars to comfort me from the agony.

The meeting room we sat in to talk to Hospice was better lit with natural light than the room we sit in at the geriatrician’s office. That one makes me feel claustrophobic and sensitive to the acrid smell of old coffee reheated in the microwave in there. This room felt airier. Like I could breathe. Like I could walk out of there and see clearly.

I walked out of the meeting with the Hospice person and saw my mother and she saw me, and beamed. So much happier than the last time I saw her at her home, when she twisted my fingers and dug her claws into my arm and stuck her tongue out at me and rolled her eyes in disgust at me. Her psychotropic cocktail is working. It is better. And truthfully, she was delightful when I saw her. “Better living through pharmaceuticals,” my sister would say. And better dying, I suppose.

The patient rooms in Geri Psych are barren. My mother has a bed and a chair, and a 24 hour person by her side. That’s it. And Geri Psych smells like you think it would. Like old people. Like peppermint and wood soap and antiseptic and freshly washed linens. I walked out of the meeting with the Hospice person and breathed in deeply as I walked down the hall. Everything. I breathed in everything I could with both nostrils, deep into the bottom of my lungs, not afraid of the smell of institutionalized old people. And when I found my mother in a large open room, I sat next to her and wrapped my arm around her, pulling her closer into me so I could press my face into her hair, and breathe her in too.

The Hospice person reminded us that just as there is a process to being born, there is a process to dying. I marveled at the straw texture of my mother’s hair against my face and thought that there was a time when her parents pressed their faces into her little baby head, her fine hair then thin and satiny, and breathed her in too. 78 years prior. Her scent. I wanted it to live inside of me as I undertook the long process of trying to navigate the elevators to leave the geriatric psych ward where my mother lives. Until she doesn’t anymore.

The last time I saw my mother my toenails were painted lavender and we sat in the afternoon sunshine on the deck of her new home, me playing guitar, and she ahold of my right big toe, puzzled, working to rub the color off my nail with her thumb. It was alright. Things here are good. She is well. The deck is warm and the porch swing is comfortable, and there are railing planters sprouting fresh vegetables. This is a good home. It is a better home.

My mother was evicted from her previous home at the end of last June. She was a bad fit there. Really, that is what it was. You could go back and count "incidences" or "situations" that didn't work for either party, but really she was just not right for that facility. There was a breaking point, and a call to my sister, and an official notice that we had to remove her. And panic on all our parts as to where she would go, how we would pay for it, and how to protect my Dad. Moving her back to the house she shared with my Dad was not an option, her needs are too great now. There were dozens and dozens of phone calls to new places, and visits that did not pan out, and scary visits to places that we were grateful we did not end up in. There were repeat visits to a facility that was run by a tanned senior woman who lived on site with her residents, and whose bedroom was decorated in gold and faux animal pelts. She had cared for people with dementia longer than I have been alive. I liked that one. But it did not work out.

We were all angry at the executive director of the previous home. "Mom always hated bitches like her anyway," my sister reminded me. Yes, that was true. Tall and skinny and blonde and smiling too much in her perfect suit. The executive director really could have done a better job, especially with the bullying and the ostracizing. She could have done a better job maintaining order. All the residents there seemed to be on their own too much. Yes, they served nice meals with cloth napkins and yes it was shiny and clean, in a Hotel California kind of way, but there wasn't very much order, and just because people have dementia doesn't mean they don't remember to be pissed off and frustrated about being sick, and take it out on each other. Just ask the woman who always took her pants off. She always had something to say. My mother was asked to leave that home. My mother, who told me when I came home from kindergarten saying that my teacher wanted me to do a better job coloring inside the lines, told me "You don't have to color inside the lines." Then she bought me the 64 box of crayons. So there.

The last time I saw the director of the new home she was wearing jean shorts and a tshirt that said "Shut The Duck Up." She is very real, and her staff are loyal and patient. They love my mother. The ratio of staff to residents is smaller and there are a lot of rules. The day Mom moved in she was told quickly, you will always sit at this place at the table for meals. You will not hit. You will not swear. And I thought - good luck with that. But it is totally working.

My mother lost 35 pounds in six months at the last home. She wouldn't sleep and she was constantly setting off the alarm as she tried to escape. She was stressed and acting out. I thought her behavior was the progression of her disease but it was her rage, exacerbated by its incarceration. At the new home she is gaining weight, and sleeping better, and is coloring again, which is huge. She even learned something, which blew my mind.

I think a lot about the other residents at the previous home. Especially the ones, like my mother, who just disappeared from there. Not because they passed away, but because like her, they did the kinds of things that people with dementia do. They hit or pushed or yelled or whatever they did that was not sit quietly and wait to die. They disappeared and went somewhere, to whatever less-than-shiny place their disease forced them to go. I think about the ones whose families we never saw visiting, and I hope those residents behave because I have seen what their options will be and where they will go when they do not have a family like ours advocating for them. I think how scary it must be to be old and make friends in a dementia facility, and have to wonder what happened to them when you don't see them anymore. My mother had one friend there named Marilyn. I think about Marilyn and wonder if she remembers that they were friends.

The view from the big picture window by the dining area at the new home is wide and expansive and shows a vast landscape of green. A huge yard with a rim of tall trees hides the river's edge. In the autumn it will be spectacular. My mother still paces constantly in her staggering gait in her new home. How she doesn't fall over more, I don't know. But this facilities' hallways are smaller and not so easy to get lost in, and she can circle back and see the view out the window, pass by the staff, and look them in the eye and tell them "I love you." "I love you too," they smile and say.

Everything about this is hard. Nothing about this is easy.

Strained relationships with my mother’s facility, are hard. Communication with family members is hard. And often times, frightening. Trying to wrap my brain around what my sister tries to explain to me about the bureaucratic quagmire we are steeped in, is hard. Driving an hour and a half one way to sit with my mother and try to hold her attention for an hour while she actively ignores me, is hard. It is everything. Nothing about this is easy.

I do not like the stranger that inhabits my mother’s body. I feel betrayed that it has taken her sounds and her scent and the energy I feel radiating from her body when I sit close to her. Walking into her home is like walking into a bizzarro world. All of us who have loved my mother are growing weary. And yet her body champions on, and then I find myself asking how long this will go on, and then I feel like a shit for wondering that.

On Halloween in the year 2000, I almost bled to death. That was a bad day. My husband and I had been struggling with infertility and I was going in for a routine laparoscopy to have a look around my insides and try to figure out why things were not happening. My surgery was at 7:00am, and I was supposed to be home by noon. I was a reasonable amount of nervous about this, but I had been told many times this was no big deal, they were going to make a little incision in my belly button, a few stitches, and I would be back to work the next day. Easy.

That is not what happened. By the time I was able to go home from the hospital I had spent a week there, mostly unconscious, for having lost 2/3 of the blood in my body. I had been nicked, and stitched back up, and a great mass of congealed blood had collected in my abdomen like a huge out of control mold of jello exploded onto  the floor. Clean up was intensive, and the little scar in my belly button became a 6” long zipper from where they had to cut me open again and vacuum the mess all out. My doctor did not want to give me a blood transfusion because he was afraid I would contract HIV, so the healing was slow and arduous. The memories I have of that time in the hospital are of course, disjointed and bizarre, flooded over by the rotating waves of excruciating pain and momentary relief provided by morphine. A vivid nightmare from which someone might turn to the person sleeping next to them and say “I just had the weirdest dream, did that really happen?” and the person sleeping next to them would have to look into their soul and say, “Yes.”

But I also have another vivid memory of that time. It was that my parents showed up to the hospital before they wheeled me into surgery. I was surprised to see them. They had come by our house the day before and I thought they had gone back to their home. But there they were. I remember thinking, “Why are you here? This will be easy. I will be home by noon.” But my mother had this urgency in her eye. She could feel that something terrible was about to happen. She was scared, I could see it. It frightened me. They last thing she said to me as they took me away, was “I WILL ADVOCATE FOR YOU.” I remember thinking that was so weird. Like, ok. Mom, chill, thanks, but I’m good.

She did. The doctor who nicked me tried to sit with my panicked husband and parents and explain what had happened in long, laborious language and my mother looked at him and shouted “JUST FIX HER!! GO FIX HER!!” Not in a crying, weepy shouting kind of way. In a “If you don’t fucking fix my baby I swear to God all 4 foot 6 inches of me will personally, relentlessly, kick your ass into next week” kind of way.

That was my Mom.

I miss my mother ferociously. I miss everything about her.

I think about that story and ask myself if I have done a good enough job advocating for her in return. And I think honestly, probably not. There are things I do not understand about the place we are all in right now. I oftentimes look back on the choices I have made and think I could have done better by her. I'm sorry about that.

Somehow, even though the doctor told my husband and I that we would definitely not ever have kids after his mistake, we ended up being surprised with a child. A funny, smart, amazing boy who has some special needs, and who does not adapt well, and who has struggled pretty much right out of the gate. I meet with his grown ups frequently and spell out what they can and can not expect from my child. I strategize and try to turn a deaf ear to ignorant other parents with “typical” kids who judge me, who judge my child. All five foot, three-quarters of one inch, is prepared to kick a whole line of asses.

Of course this is not new to me. I know how to do it because my mother was always my, and my sister’s, advocate. She always had our backs. She showed me how to do this over and over and over again. My mother gave that gift to me, so I could give it to my son. Thanks, Mom.