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.

The old woman who takes her pants off does not like my mother. Neither does one the old men, or the woman with enormous bags under her eyes. Many of the residents of my mother’s new home do not like her. She is shunned by many of the residents, mostly because she is constantly speaking gibberish, and because she has lost the ability to determine what is her space, and what is theirs. She touches their stuff and they do not like that. She paces and wanders, and sometimes wanders into their zones and commits acts of great social misconduct. They can not understand her, and they actively move away from her when she approaches.

This is very weird to witness because of course you don’t ever want to watch someone you love being ostracized, and yet, she seems to truly not care. Of the handful of phrases she can still get out, “I love you,” is still at the top of the list. She loves her family, and the staff, and the nurses, and she smiles and is friendly to everyone, including the old bitches she lives with. Even the one who takes her pants off.

I also would like to believe that the other residents do not like her because we are there every day, and they are jealous. My dad is often there and people comment to me about how beautiful his dedication to her is. My sisters come at least a couple of times a week and I try to come on weekends with my guitar. My mother sees me coming and will stop her pacing to get situated in her room and wait for her private blues concert. She smiles and taps and punches in the air like she is back in senior water aerobics class. She teeters on her feet as if her body wants to dance but can’t quite remember how. I keep playing. I play and play, and for a little while, she is quiet and does not chatter on.

My sisters and I got together recently and went through my mother’s stuff at the house. Her clothes, the garish plastic jewelry she has been attracted to the past few years, the antiques. I wanted her red and green plaid sewing ham. I do not sew, but she let me play with it when I was a little girl at her feet in her sewing room. I wanted the red tin of buttons, I can still remember what they smell like, but that has disappeared. I wanted the duckie broach my grandmother gave to my mother when she found out she was pregnant with me. I wanted the diaper pin the doctor gave her.  I wanted all the art supplies. My sisters and I had a peaceful time going through her stuff, and spoke to each other respectfully. There were watches, some very old, but I did not want the antiques. I wanted one she wore, and when I took it to the jeweler to get a new battery installed he told me it was ruined on the inside and would never work again. When I cried he told me it was just a cheap watch, like a Timex, and then said only “Oh,” as I walked away, muttering that it had been my mother’s.

When the doctor told us that my mother’s frontal lobe dementia would compromise her ability to communicate, I naively though she would get more quiet. I figured her words would be trapped in there, like a piece of duct tape over her mouth. I did not envision it would be the opposite, that she would talk and talk and talk and say virtually nothing. But “I love you,” she also says. I love you, I love you, I love you.

It is hard to say how much my mother recognizes me now. I bring the music, and she knows that. I think often about the lyrics to the Willy Porter song, “Unconditional”:
I will always love you, no matter what may come
I carried you inside myself, the two of us are one
No matter how you fall down, or how it comes undone
To me you will always be shiny

“My baby,” my mother said as she saw me recently. “My baby. My baby, I love you.”


My mother is doing well in her new home. She is adjusting well and never cries. She is sleeping peacefully all through the night and is making new friends that easily understand her through her language barrier. My mother is happy to see me every time I come to see her. She understands that she lives there now so she can be safe, and does not ask repeatedly to go home. She does not try to escape. My mother’s children are remembering each other’s bruised hearts and always speak to each other respectfully and do not call each other terrible names. Everything is working, and I do not lie awake at night feeling like a monster.

And everything I just said, is a lie.

Here are some things that are true.

My mother lives in a very nice facility that has dessert all the time. I told my sister I suspected they pumped in that delicious fresh baked smell and but she disagreed, she thinks it is really fresh treats baking in the kitchen. That’s probably true. The staff is kind and appears engaged. They take the time to remember our family’s names and are eager to problem solve with us.

The facility is full of characters, all of whom have dementia, and sometimes when you get to talking to one of the residents, you may think for a moment to ask them, “Why do you live here?” and then you quickly realize why. One of the women there has 8 sisters and 3 brothers. Guess how I know that. That one likes to yodel, and when I bring my guitar to sing the blues to my mother, she will pop in and yodel along. I like that. That is true.

I took some of my son’s old picture books to read to my mother and she likes that. Especially the illustrated children’s bible. She knows those stories and likes to cuddle up close on the love seat in her room and listen. She likes to lay her head on my chest like a little girl and run her gnarled 77 year old fingers along the page while I read to her. That is true too.

My dad looks good. He talks about being sad and lonely for his wife, but he looks like he is sleeping. The house looks good too, he is taking good care of things, and he and his old, fat, black, dog go for a walk every morning. They cling to each other, my dad and that old, fat, black dog. I’m glad she is there for him. That is true too. I am enjoying time with my dad, being able to sit at a restaurant and talk peacefully, or talk uninterrupted on the phone. He goes to see my mother almost every day, and brings her treats. When I called him late the other night, I found him reading old love letters he and my mother had exchanged when my older sister was a baby. That is also true.

My mother used to have an expression that I keep thinking about. If you were going to say something, but forgot what it was, she would say “it must have been a lie.” How many lies must be getting told at my mother’s new home. There is another expression I keep thinking about, from the Rolling Stones. “What a drag it is, getting old.”