The weekend before we moved my mother into her new home at the dementia wing of a facility, I began to paint. It was just kind of a chance thing, my 8 year old son came across a kid’s palette of watercolor paints and for some reason he asked me, “How do these even really work?” and I said, “Well, like this,” and I knew. Not because I was a big watercolor painter, my degree is actually in ceramics and I was never a big fan of watercolors, but I knew because I had seen my mother do it so many times. Putting that first swath of loose, liquid pigment down felt amazing. So I kept doing it. My son made ink outlines of zombies, and I painted them in. Then I did still lifes. I allowed the paint to spread and fill uncontrollably on the page and I just watched it go. I work as a production graphic artist in packaging during the day, and everything there is controlled and concise down to a fraction of a millimeter. This was free and loose and liberating. It was an opportunity to honor my mother.

Last Tuesday, while my mother was at adult daycare, I took the day off work and went to my parents’ house to pack up her stuff and take it to her new home. I met my nephews at the house, they are grown men now. They, and my niece, had been babies in that house. So had I. We packed up my mother’s clothes and her toiletries and unpacked it in her new room while my sister did an hour’s worth of paperwork to get her checked in. The staff was kind and welcoming and it smelled like fresh baked goods there. It felt safe. I felt safe being close to my nephews as we worked together.

It took all day to do this transition. Dad went and got Mom from day care and we all were there to welcome her. The director offered her peanut butter cookies fresh out of the oven and when I looked at them I remembered how those were her favorite. When I was a kid and she and I would make them together I don’t remember which one of us enjoyed making the crosshatch pattern on the top more.

We stayed with my mother a couple of hours in her new home. Other residents came by and introduced themselves and the staff introduced each other as “my friend…” We stayed with her until it was time to go. And then the staff distracted her. And we left. “It is harder for the family,” one of the staff told us as she entered the secret code to unlock the frosted door and let us out. And out we went. And I wanted to die. I was certain for a moment that I would, because I was sure everyone, not just me, could here my heart shatter in my chest.

Years ago, we all sat around a table in a conference room at my mother’s gerontologist while she read my mother’s diagnosis. “I don’t want to go to into a facility,” my mother said. “Oh, by the time that happens you won’t know what is going on and won’t care,” the doctor told her. I keep thinking about that conversation, and how my mother cried, and then how shortly thereafter she stopped because she forgot why she was crying. I don’t know if she knows what is going on now because her language is so greatly diminished. I visited her yesterday and she said she wanted to go home, but she said she wanted to go home while she lived at home.

The staff reports that she is eating and smiling and friendly. They know her to be charming and pleasant. The facility serves dessert with every meal, because why the hell not, and she likes that. They like her. When we ask the other residents if they like living there they say yes, and absolutely, and very much. That makes me feel better because people with dementia tell it like it is and if it sucked one of them would have said so by now.

My mother is living in the best facility our family can afford. My sister has worked very hard and so has my beautiful, kind, loving father. He has worked very hard for a long time and since my mother has moved, he seems considerably more peaceful. He is sad and he misses her. But we all know that she is safe and is getting the very best we can possibly give her.

The day after we moved my mother into her new home, I woke up, and I painted with my son’s paints, and I felt connected to her as the thin watercolors bled across the surface of the paper. “Come on,” I told my husband, “we are going to the art supply store.” The brand of watercolor paints my mother liked were on sale so I bought a container of 12. And when I put the brush into that real paint and applied it to the paper, it almost took my breath away. The rich, intense blast of blue, and crimson, and ochre spreading freely through the water was amazing.

I wanted a better brush. I wanted to do a better job. “Might as well take Mom’s brushes,” my sister told me, “they are sitting right there in her office.” So I did. I came to the house and there they were, in her old brush holder. I remembered which one was her favorite when I saw it. The one with the clear acrylic shaft. That one is mine now. It is clean and ready to work.

I do not have an experienced watercolor painter’s hand but I know how to do this because my mother did it over and over again, and I saw her do it. It mattered enough to me on some subconscious level to absorb it because it mattered to her. And now years after she stopped painting, a chance to come alive again. Blue and crimson and ochre bleeding through the water into the tooth of the paper, connecting me to my mother as we all transition.

A place has been chosen for my mother to spend the rest of her life.

It is new and clean and big but not as big as the first place we looked. It is not as small as the third place and does not have the second place’s Doctor Octopus showering contraption. The carpet on the floor is a solid color so the residents do not get confused. It does not smell like pee or Ben Gay. The doors are frosted so the residents can’t look out and try to escape. She will go in just over a week, and they are advising us to not visit her for a few days so she can get acclimated.

I very much would like to punch someone in the face, especially some ignoramus guilty of saying that we just callously throw our elderly into old folks’ homes. And the 9 non-consecutive years I spent in training in the martial arts has allowed me to know exactly what that would feel like, to punch someone in the face. Hot, and smacky, and gratifying.

My mother would have appreciated that.

We are actively shopping for a new home for my mother. 

We have been to two so far and have two more to look at. I liked the second facility, the one where a resident named Joan wandered into the demo room and had herself a little nap on the demo bed, and the director just worked around her. My sister did not care for this one, she said the shower room was too creepy. It kind of was. They have to get the residents naked and strapped into this Doctor Octopus kind of contraption to wash them. This is why it helps to have more than one set of eyes. I am so grateful my sisters and I are working together on this. I don’t know how only-children of parents with dementia do this. I guess they do it sooner than we have. That is what my mother’s social worker told us the last time we had a family meeting to discuss how to get my mother moved into a facility. The social worker said other families would have done it by now, they usually do not have the strong teamwork we do. It was good to hear this.

What do you think the end of your life is going to look like? Me – I got it all planned out. I remember hearing a story years ago about a couple that went for a drive when Mount St Helen’s was exploding, and even though they were miles and miles away from any danger, some random rock blasted off the volcano and struck their car, splat!, and they were dead. I like to think that they were driving around after a really satisfying lunch of grilled sandwiches and microbrews, talking about how much they liked each other. Maybe they were holding hands. Now I just need to move myself and my loved ones closer to an active volcano.

My mother had the end of her life all planned out too. She wanted to die at home, and she wanted me to hit her over the head with a brick if she started to get goofy. Neither one of these things is going to happen.

Shopping for a facility to put your mother in is weird. Of course this is a business, and we are making informed choices. I call and make the appointments and juggle the emails and spend my vacation days coming to town, and my sisters ask the hard questions to the staff. I am not opposed to asking hard questions, I just often feel quiet when we are there at the facilities, doing our shopping.

I feel quiet, and I feel sad, and, I feel relieved. I have felt very afraid the past year, afraid she would get hurt at home or get hurt while she and my dad are out driving around during the day. I have confidence that she will be in a place that will keep her safe and hopefully happy. I am looking forward to my dad having some peace.

But she will not go willingly, and I feel a bit like a monster about that.  When she has been out with my sister or I and we go past a strip mall or hospital, she will manage to get her words together enough to say “Don’t you take me in there.” At first I couldn’t figure out what her deal was, but then I got it.  I have some vague memory of being a child and being overwhelmed with fever and being combative under the bright lights of the cold emergency room as adults tried to poke and prod at me. “You have to,” my mother told me, sadly, solidly. “You have to.”

Two more shopping sessions to go, and then a decision. Someday soon we will take her in “there.”  And I will feel relieved, and, like a quiet monster.

There is an ache at the base of my skull, the point at which the 10 year chronic pain I have had in my head radiates out from, that felt especially twisted as I spoke on the phone with the director of the facility I called today. I called there to ask about setting up a tour for my family so we could decide if this would be a good place for my mother to live.

“It’s a terrible disease,” the director said.

“Yes,” I replied.

“So hard on the family.”

“Yes.”

“Blah blah blah…” she went on, “…care for Mom, services provided, blah blah, we will love her for who she is…” 

I began to be acutely aware of the stubble on my leg I should have taken care of and how prickly it feels inside the calf of my pants. It was easier to let my mind drift towards that and the ache in my head, than the pain of calling a facility for my mother. This was my first call to a facility. It will not be the last.

My father went to Texas last week, to be with his people, and I went home to share shifts of taking care of my mother with my sisters. I played guitar and sang to her for hours. Mostly the blues, because she would tap her feet and bob her head to that genre more than to the emo singer-songwriter stuff I usually gravitate towards. My mother’s mouth is usually constantly running, non-sensical words come flooding out like wild rushing water from a busted pipe, only occasionally connecting syllables that make any kind of sense. But when I play her the blues she is quiet and content. She likes Bonnie Raitt and Sippy Wallace’s “Women Be Wise.”

“Women be wise,” I sing to her, “keep your mouth shut, don’t advertise your man…”

“Uh-uh” my mother will respond.

“Don’t ever sit around, holdin’ no conversation, explainin’ what your man do to you…”

“Don’t!”

“Cuz these women now days, they aint no good, they laugh in your face, then try to steal your man from you…”

“YES!”

“So women be wise, keep your mouth shut, don’t advertise your man”

“NO!”

Mandolin has been my primary instrument for the past few years, even though I started playing guitar 35 years ago. The songs I have pulled out of my ass the past week have been buried deep in my brain, I have had to work to remember how they go and what the lyrics are. But they slowly came to the surface, and I began to challenge myself with new and creative ways to play. It was sad and interesting to watch my own mind expand, while hers contracted, right in front of me.

When I wasn’t playing music for my mother I was trying to get her to not eat her salad with a pen, or put checkers in her food, or be frightened from glimpses of things she saw on the TV. We settled on watching the food channel, that was safe. We also watched some Cross-Fit show where very athletic shirtless men climbed ropes and lifted absurd amounts of weight. She liked that too.

My mother wanted to go for a ride, but once we got in the car she wanted to go home. And once we were back home, she still wanted to go home. She tried to communicate with me that she was afraid my Dad was dead, or having an affair, and because she can not understand my attempts to tell her otherwise, it was best just to pick up the guitar and divert her attention.

She would get angry at me, and shake her fist, and glare at me like she hated me. I was amazed at how blue her eyes were when she hated me. And since I often couldn’t figure out why she was mad I just stared at her, struck at how beautiful and tragic at the same time.

It is so weird to have that disconnection with your mother. To sit close to her and feel the warmth of her body and her energy and know in your soul this is “Mom.” And to call her name, Mom, and have her turn and look at you. She knows that is her name. She earned it. And yet she is different, not who she was.

“That is what is so hard on the family, they love the person for who they were,” the director of the facility told me today. “We will love them for who they are now, and who they will be,” And I said ok, because I did not know what else to say. Next time I need to remember to tell them that she likes the blues. And I will be there to see her with my guitar.

This is what I thought the last time I sat on the floor at my mother’s feet, double knotting her shoes.

I thought- this used to be my bedroom. I was a little girl here and I slept here when I outgrew the crib in my parents’ room. I had Peanuts sheets with a Snoopy dog house pillowcase that I sometimes wrecked by falling asleep with gum in my mouth. I have an early memory of being woken up from a nap, being dressed in a frilly blue dress, and taken to a photographer for a photo that is still hanging somewhere in my parents’ house. I fell out of the bed at night and was frightened, and my big sister would come into this room and comfort me.

I thought- this was my mother’s sewing room when I moved into the bedroom down the hall. It was always a little warmer in there when she was sewing. The incandescent bulbs on her desk emitted a faintly noticeable heat when you walked in, and it sounded like the mechanical purr of the sewing machine and the blathering on of am talk radio. She liked to listen to hosts that represented her opposing political view “just to keep track of what they are up to.” It was a comforting sound on a rainy weekend day, and she would usually emerge from there with an impressive creation I will never be able to replicate.

I thought- it won’t be long before we don’t live here anymore, and another family will fill this room with little girls, or impressive hobbies. They won’t know what happened here and won’t really care, just like, unfortunately, I don’t really care about who lived in the present house I share with my son and husband. The people who live in my parents’ house won’t know that I fell asleep most nights to the sound of my parents giggling and cracking each other up.  I hope the next owner will be able to feel it though.

I thought- it doesn’t take long to go from a mother tying her little girl’s shoes in this room to that same girl tying her mother’s shoes. Both instances, so that she doesn’t trip on her laces and fall down.

And that is our biggest challenge now. My mother loses a little more of her footing every day. What is given to you as a child gets taken away, step by step. Like slowly walking into peril. When I recently took her with me to Target, she became confused trying to cross the lot in front of the door, and froze. Traffic was stopped in both ways as I bent down to her, arms outstretched, trying to coax her to me. “Come on, Honey. Come on. You can do it. I’m right here.” I learned that from her, because she said it to me, and usually closed with “Come to Mama.”

My father, of course, would like a big break and would like to, as my sister would say, “be with his people.” He would like to go to his birth family and be with his sisters and brothers and their families. And of course we will do everything we can to get him there. But also of course, I am afraid of how I will take care of my mother when she can’t find him and becomes alarmed and I am afraid of how to care for her physical needs. Double knotting her shoes won’t soon be enough to keep her safe.

When I was a child, and I’m sure long after I stopped being a child, my mother would be so satisfied and filled with joy to be able to go to the local greenhouse around this time of year and buy flowers for her yard. She would save up her money, putting a little bit away every pay day so she could come to this moment, and go to the greenhouse on a shiny, early summer, Saturday morning and fill her car with flowers. She would want me to go along, and I would not be as excited as her. I would be a little bored and would want to dominate this shopping trip with my own choices, and she would let me pick out one or two flowers, but basically this was all her. Now that I am a mother I totally get that. This was HER moment.

The greenhouse always smelled fresh and like wet soil. I was often only as tall as the counters so as I walked with her my direct line of vision was what seemed like an infinite line of amazing colors from the earth. Every year she bought something a little different, but the constants were always petunias, geraniums, and snapdragons for me, in yellow. When we would get home she would open her car trunk like a child opening a gift, just for her. We would lay out the flats in the yard and she would get to work making a little hole in the ground for each beautiful little one to be welcomed to its new home.

Her yard was nurtured like one of her young. There were wild rose bushes that bloomed yellow for my sister’s birthday in June, and pink for my other sister in July. I would wake in the morning to that scent coming into my bedroom. She only watered in the evening, and so the gloaming for me in my parents’ yard always sounded like the soft, gentle hiss of one of her garden hoses that had been punctured many times along its length to spray a constant mist low to the ground. I would forget and walk into the wet yard and drench my feet and my mother would chuckle at me.

She loved the spring and the summer. She loved the sun and the heat and she loved to swim. She relished the whole lot of this and could not wait to get home from her office job to work in the yard.

She and I are different. I do not love the sun and work to actively avoid it. The heat makes me bitchy. I swim if I have to, and, my yard looks like crap.

I feel sad about that. I wish my yard was a glorious array of horticultural delight, but I am often off having adventures instead of kneeling on the patio pulling weeds. I spend my money on instruments instead of flats of flowers. My mother would have been ok with that. I have the life I have because I was encouraged to take advantage of every opportunity I was given. I was told that she was proud of me. She beamed when she saw me on stage, and never batted an eye at me for having a yard that looks like serious crap.

Last summer I came home to my parents’ house and was stricken at how the weeds were taking over. My mother never would have allowed that to go on and so I went to work trying to weed her flower beds. I set her up a little chair in the sun for her and she seemed peacefully oblivious. My dad was trying to plant hanging baskets to impress her and he kept trying to show her and get her approval but she didn’t care. That was sad. Finally she reached over and put her hands into the leaves. “Oh!” she said “I had forgotten how much I love this!”

She has forgotten how much she loves this. And that. And the other thing. And sometimes, me.

I don’t work in my yard, but I know how. I listened and I watched her and I know. I remember.  Some day I will open the trunk of my car, pull out petunias and geraniums, and dig new little homes in the ground for the little flowers my mother would have nurtured and revered. I will remember that she loved this.

Sixteen years ago, as we were planning our wedding, I had decided "'til death do us part" wasn't good enough. Too traditional. I wanted something different and we decided on the more contemporary "until we are parted by death." I thought yes, I will be with this man until the day I die. There will be times we have no money, and times we do. There will be good times and bad times. There will be times when one of us is sick, like with the flu, and the other one will bring soup and a cool cloth for a fevered brow. And we will make it. Nothing but death will tear us apart. I said that when I was 28, and he was 27.

My parents celebrated their 58th wedding anniversary yesterday. I came to town with my husband and son and we went to a restaurant that disappointed my father and caused him to be cantankerous with the wait staff. I cut my mother's meat for her and escorted her into the women's room while she committed an wide array of social faux paus.

On our first wedding anniversary I called in sick to work so my husband and I could spend the day in bed. The next day I could barely walk. I was 29 and certain that in 58 years I would still want to spend the day in bed, so in love with him I couldn't stand to be away from him, especially on our anniversary. But yesterday I split my parents up again so my Dad could have a break. I spent three hours driving my mother around again in circles. She can't stand to be away from him. She is afraid and angry when she can't see him. But I bought her a chocolate shake and that bought us some time. She can barely walk. She is old and her body is tired. She teeters and is tippy. She can barely walk.

For a while my parents owned their own business running errands for people. Dry cleaning, package delivery, rides to the doctor, etc. They were champion grocery shoppers. One of the times I drove my mother around we ended up at the grocery store and I tell ya what, once that old lady got behind the cart, she was like geriatric bat out of hell. She knew where she was at and what she was doing and had increased her speed tenfold. We can not presently give her a walker because she struggles to understand what it is for and that causes more chaos. I think we should forgo the walker and get her a grocery cart.

When I looked at my parents yesterday I felt so naive. "In sickness and in health," I had promised. Just as my parents, young, and in love, had promised each other. Over the years I had occasionally allowed myself to think maybe if something horrible happened to one of us, like cancer, the other one would still sit by their side and hold their hand while they were ill. Two or three years, I would think. Worse case scenario two or three years of serious illness or suffering and then, better. Or dead.

"You are so pretty," my Dad told my mother as he buttoned her jacket for her again yesterday. Eight years we are in to this journey. "You and me, Kid," he will say to her as he reaches out his rough skinned hand for her and waits for her to stagger over to him and place her tiny and gnarled hand into his. She will be sick. Until they are parted by death.

Things have been steady for a while. No big changes. But lately my mother is growing more quiet and reserved, still happy to attend whatever is going on around her, but not trying to be a part of the conversation anymore with her jumbled, fragmented language. I felt embarrassed for her when she would do that. I felt embarrassed for her when she didn't feel emabarrassed. Now of course I am missing the sound of her voice.

She said my name a few weeks ago. My dad put her on the phone, which is usually a struggle, and told her "It's Sara," and she said "Hi Sara!" like she would have. Like she did. Like she used to when she would say "Hi Sara! How's my baby?"

When she said my name, it knocked the wind out of me for a second. I couldn't think of what to say next until I remembered I was supposed to say "Hi Mom!" So I said that. She giggled a little. And that was the end of that. I couldn't decide if I should have written that down at the time. I'm glad I didn't.

I saw my mother at my Dad's birthday lunch last weekend. The only thing I heard her say then was "Corn." My sister offered her a muffin and when she gave it to her she said "Here Mom, it's corn." "Corn," my mother repeated a few times. Like she was rolling the word around in her mouth to experiment with how it felt. My son did the same thing when he was a baby. My mother eats the things we give her and she is delighted at the experience of the muffin, and actually that part is pretty cool. One of my friends told me when I was pregnant that the best thing about being a parent is you get to experience the world for the first time all over again through your child. I guess that is one of the best things about this situation too. Muffins, especially corn ones, are amazing.

After our meal we went to a coffee shop and my Dad disappeared from her view for a brief time. She was agitated. There was a mirror on the wall and my sister told me Mom could see Dad's reflection, but couldn't figure out how to get to him. "Like a kitten," I said, and we both laughed. Mom saw us laughing and laughed too, and then it didn't matter that the mirror confused her. That's nice too. She still laughs.

The doctor told my Dad in the beginning that he would eventually have trouble at night because her sleep schedule would become erratic and she would wander. Her sleep is becoming erratic, but no wandering so far. So far she's been keeping him up because she is quietly singing sweet songs to their ancient cat, or she is reaching over to gently rub my Dad's tummy while he is sleeping and I guess that wakes him. But of course this could be substantially worse. I guess this will, be substantially worse.

My mother and her in-home aide were at my parents house last week. The same house they have lived in for 50 years. My mother told her helper she was going to get up and use the restroom, but then she came back a little too quickly. "I was going to go," she said, "but I can't remember where it is."

"We get up, and we go, and we eat, and we go, and we eat, and we go, and we eat, and... then we go to work," my mother told me. Yeah, that sounds about right. My parents drive around a lot, due partly to my dad's inability to stay still and my mother's need to wander. The past couple of times I came to visit she got bored and put her coat on, and so I grabbed my car keys and drove her around for about 15 minutes. She likes that, but last time got increasingly more agitated that my dad was not in the back seat.

But that was about the extent of her agitation. She was in a pretty good mood. "Uppity," my dad would say. We have been trying to tell him for decades that that is not a nice thing to call someone, but he can't seem to grasp that and continues to use "uppity" however the hell he wants. Shit, he's almost 81 years old, if he wants to call people in good moods a word meaning racist arrogant snob, rock on, Old Man.

"See that?" my mother asked me, pointing out the glass sliding door to their backyard with her gnarled, arthritic finger, "1... 2... 3... 4... 5... 6..." She counts 6 of something out there constantly. I can't tell what because so much of what she says is gibberish now. Not that long ago she at least understood the cadence of conversation. You could say something like "I fell down some stairs and broke my arm," and she would smile and say "Isn't that wonderful?" But the meter of conversation now is all cockascrew and she interrupts and talks when you talk.

Cockascrew. That was an expression she liked to use. Shitmunkledunk - that's a color of displeasing, drab brown. Lord love a duck - that's something you say when you are mildly surprised, but not too freaked out. Holy catfish. I'll be go to hell. Fuck a duck. That one is different from Lord love a duck. Fuck a duck was used when say, she burned something she was cooking. I'll be go to hell was used when new interesting information was presented to her. For instance "Mom. Did you know scientist have decided Pluto no longer qualifies to be a planet?" "No!" "Yes." "Huh. I'll be go to hell."

My mother loved new information that challenged the norm. She said to me years ago, "Did you know there was a woman with Adam before Eve and her name was Lilith? Yeah, I guess Adam tried to tell her what to do too much and she was like FUCK THIS and she took off. I don't know where she went, but there is going to be big music festival named after her. You should go. All women artists." When The Lilith Fair came to our state, a pack of our friends and my boyfriend and I swung by my parents' house and we picked them up and we all went together. We had a wonderful time. My parents were always very comfortable with our friends, and when one of the more adventurous women pulled up her tank top to show everyone her new piercings, swollen and crusted with blood, my mother said nothing in judgement. She just asked for a drink off the bottle of vodka we were passing around. My boyfriend asked me to be his wife at the Lilith Fair. My mother liked that.

Holy catfish. That was a good day.

The weather relented enough for me to go visit my parents yesterday. I had a nice time. My mother was sweet and funny, cracking jokes in her language that only she got, and her laughter was infectious. I couldn't help to laugh along. My dad continues to buy her new clothes and he takes the time to have them tailored for her. She really looked sharp.

When I got to the house she was happy to see me and wanted to be engaged with me. We were going to go to lunch, and there was a slight delay getting out of the house because she had taken one of my dad's gloves and hidden it somewhere. "Go and get your purse and look in there for my other glove. Do you know where my glove is Sweetheart? Is it in your purse? Go and get your purse and see if my glove is in there." My dad did a few rounds repeating this. It's not unusual for him to talk to her like that and it is not unusual for me to alternate between wanting to scream at him "SHE CAN'T FUCKING UNDERSTAND YOU!!" and feeling terribly sad for him.

We went to a dingy diner they like where everything feels weird and dirty and yet familiar and nonthreatening. There is a bleak, cloudy, giant fish tank when you first walk in that houses four enormous gold fish and nothing else. The waitress appeared to be around 70. Her hair was beautiful and her lipstick was on the coral side and she walked like her feet had been hurting since breakfast. She clearly knew my parents and was sweet and patient with them. My dad ordered my mother a mountainous waffle stacked high with syrupy apple slices and whipped cream, and I held my breath as I waited to see if my mother would remember how to use her silverware, or just go in with her hands. She struggled at first with her fork, but got the hang of it, and when I went to cut her food for her my dad kindly took over, and the waitress brought them extra silverware without being asked as if they had all done this dance dozens of times before. No one thought twice when Mom used her sweater instead of a tissue to wipe her nose. It was safe there.

We ran some errands, including going to one of those huge hardware stores people without dementia easily get lost in. I held my mother's hand through most of this and it felt good. Her gnarled hands were warm and small in mine. We all marveled at the self serve machine that cuts keys. At one point my dad got a few steps away from her and when she turned to look for him, he briefly fell out of her sight. "Where is my husband?" she asked. "Right there," I said, "in the overcoat and hat. Doesn't he look handsome?" "YEAH HE DOES!!" she said lustfully. "He looks GOOD!!"

We went back to the house and when she saw I had brought my mandolin she asked me to please, please play them some songs and I did, and she was happy.

And then, we watched the old home movies my dad had asked my husband to convert to DVD. I am 10 years younger than my next sister, and it was very interesting to watch who we were before "we" included "me." Everyone was so young. I kept looking for signals of who everyone would turn out to be. But this was not a documentary meant to educate the youngest sibling yet to be born, it was the things that mattered to the person working the camera at that moment. Landmarks, zoo animals, camping trips. "Look!" my dad said to my mother "there's your dad! And your mom! Look Honey! At the TV!" But my mother couldn't get it. She looked out the window, puzzled. Their obnoxious black lab began to demand to be fed, barking her sharp, piercing bark into my dad's face, like two cymbals crashing together. He tried to ignore the dog. "Look! There's your cousin!" he said to my mother. The dog barked and barked and barked. Like a nail into my head. My mother struggled to understand. My dad, defeated, moaned and went to feed the dog. Coming back into the room he closed all the blinds, trying to drive my mother's focus towards the tv, and images of her past that now meant nothing to her.

I had to go. I had plans at home and so I packed up my mandolin, and put my coat on, and started towards the door. My mother stopped me and held my hand. She looked right into me. Her eyes were so blue. Funny, she used to say that about her own dad when he was old and tired. That his eyes were so blue. She rambled something and in the middle of it was "I DO love you. So much." "I know, Mom" I said. "And I'm sorry. I'm sorry I'm so…" and she knocked on the side of her head and stuck her tongue out to the side, tears welling in her eyes. I took her face in both my hands and said the same thing she would have said to me "Listen to me. You have NOTHING to apologize for. Nothing. You are good. I love you very much." I pulled her into me and she rested her head on my breast. It was like holding my child. She smiled.

I got into my car and my mother stood there on the other side of their storm door, smiling and waving and blowing kisses at me. Like when I would drive away to go back to college. From inside my car I told her, goodbye Mom. I love you.

Thursday was the day the people came to my parents' house to evaluate the intensity of my mother's decline to see if she qualified for a Medicade waiver. This is complicated and I don't understand all of it and I am very grateful that my sister does and that is all I have to say about the bureaucracy of that.

It is strange to hope that she will be "bad enough" to qualify, and to know that she is bad enough. I was not there when it happened. My father and my sister were. When I asked my sister afterward how it went she said they would point at her and ask Mom "Who is this?" and Mom would babble incoherently. We both felt it was nice that in the middle of Mom's ramblings she squeaked out one of the syllables of my sister's name.

This winter continues to be unkind. I haven't seen my mother in a long time because the roads have been slippery or the wind chill has been as much as -35 below, or because it snows and snows and snows and snows. I called to check on my parents yesterday and my Dad asked if I would like to try to say a few words to Mom. I said yes. I just wanted to hear the sound of my mother's voice, even though I knew connecting with her would be limited. She got on the phone and rambled confusedly about my car breaking down and them having to come get me. And then, clear as a bell, she said "Well Sweetheart, I can hear in your voice that you are working, so I will let you go for now. I love you!"

I was so pleased for a second to have heard her say that, even though when she used to say it, it would cut me to the bone. This was her catchphrase a few years ago when she didn't want to talk on the phone to me anymore. We would be "chatting" and out of the blue she would say that and I would want to yell into the phone "Wait! I have questions about how to be a mother! Or how to be a wife! Or how to do a lot of things that I know you know that you can guide me with! Wait!" But she would have already hung up.

Yesterday when she said it, there was a warm rush of comforting familiarity so I just caught my breath and said "I love you too, Mom."

But she was already gone.

I live an hour and a half away from my mother and father. This winter has not been kind, and because of the weather I have not always been able to get to my childhood home to see my parents as often as I would like. I feel like I am trying to play catch-up in a game I will never, ever, win. It is that dream where you are trying to run but are stuck in perpetual slow motion. Every day that goes by I fade more and more from my mother's memory. Her ambivalence toward me is painful. I tell myself that it's because I am the youngest, and therefor she hasn't had as many years of me to remember. Or it's because I live so far away and can't be there everyday to force her to see me and take me into her mind. Or because I am also a mother, and so I choose to not drive in treacherous weather so my own child will not suffer.

I called my Dad today, like I try to every day, and he sounded weary. Again. I have shared here before that my mother is like a toddler, but now she seems like a naughty puppy, causing havoc when left unattended for 5 seconds. She has been driving my Dad crazy by pulling all of her clothes out and scattering them around, or trying to wear 3 outfits at the same time. He tries to put the clothes away, she tries to "help," it's chaos.

I have been feeling this overwhelming need to tell my mother I am sorry, but I'm not sure for what. Sorry for the times I was an asshole. Sorry I didn't listen better when she tried to teach me to sew. Sorry I didn't make enough money to place her lovingly and delicately in the Cadillac of facilities. Sorry that I couldn't stop this from happening.

When I called today I asked my Dad if she could talk on the phone. Maybe I would tell her "Sorry, Mom." It's so weird to hear your familiar mother's voice and have something so foreign come out of her mouth. Not that long ago she would at least string words together but about half of of what she said today was gibberish. I decided not to say it. Before she got ill she would have responded to my apology by saying "What? You have nothing to apologize for! I love you! You're a good kid. You worry too much."

Maybe in the asshole department we are even. I have taken about a teenager's worth of sarcasm from her on this journey.

Yesterday I visited my parents and things went well. Mom was more like she had been through the majority of this journey. Mostly pleasant, and sweet. About a year ago she would say everything was beautiful. People, animals, the weather, a cup of coffee, just beautiful. I spoke to her on the phone last winter and she sounded grim and concerned. "Everything is cold and white and we can't go outside." I didn't know it had snowed at their house. "But it's just beautiful!" she perked up.

If I could be heard by my mother I would tell her I feel afraid. I would tell her I often don't know what to do in this situation and that makes me feel sad. If she could talk to me like she used to she would tell me to listen to my gut, and that I am a good problem solver, and a good kid. That would make me feel better. When I was pregnant she told me not to worry about being the perfect parent, and that I had a lot of screwing up to do. But that she knew me, and she knew I was a good person, and she knew I would always work to make it right.

Yesterday I brought my mother some play doh, and a small purple ball that lights up when it gets bumped, and my mandolin so I could play her some songs and keep her out of my dad's hair. My middle sister and my nephew were there, and we sat in the 80 degree family room with me playing songs and my mother talking through it all to thank my sister for everything and to tell her she loved her. As we were leaving she asked me, "Are you going?"

"Yes," I said.

"When are you coming again?"

"Next weekend. Would you like that?"

She babbled something incomprehensible about my "guitar."

"I will bring the mandolin again next time and play you more songs," I said.

She turned away from me like a fickle cat inviting me to sniff her butt hole. "Whatever," she replied.

"I love you," I said.

She rolled her eyes at me, and turned away, inviting me again to sniff her butt hole. And began to tell my sister again how much she loved her.

Whatever, indeed.

Last week my dad and my oldest sister began to explore new places for my parents to live. Last week I went to a psychic and told her I want to know how all of this with my parents is going to play out.

When I was visiting my parents yesterday, my dad was studying something a friend of his had given him regarding curing Alzheimer's with coconut oil. Today when I called to check on my parents I softly, and gently, reminded him what their gerontologist said they day we all gathered in her thin-aired, 90's paint-schemed, plastic-plant-decorated conference room to tell us Mom was ill. "She's not going to get better."

My dad, who has always shielded himself behind evidence and information, came prepared to this meeting with a white 3" binder busting at the seams with copies of articles and newsletters and assorted clippings.

"Maybe she has a vitamin deficiency," he said.

"She's not going to get better," replied their doctor.

"Maybe she is not getting enough exercise."

"She's not going to get better."

"Maybe… "

"She's not going to get better."

I went to the same psychic who told me when my husband and I were struggling with infertility that I would have a son someday. I scoffed. But that happened. She told me we would sell our house, and it would go quickly. And there it went, 6 days after we put it on the market.

"This is going to be a hard year," she told me last week.

Whatever.

When I was a kid I was always kind of freaked out by old people. My maternal grandmother died when I was 6 weeks old, my maternal grandfather lived in Florida and I would only see him a few days a year, and my paternal grandparents lived in Texas. I think I saw my dad’s dad maybe 3 times, and his mother maybe 6 times. So I didn’t have a lot of exposure to old people, and when I did I thought they smelled peculiar and I never really knew why they always wanted to hug and kiss me so much.

My mom’s dad was like a log. Big and strong and thick, with a bit of a bark-like outer surface. He had a big, booming laugh that sometimes frightened me, and he wore a back brace that pressed me uncomfortably when he gave me one of his crushing hugs. He staggered when he walked because his back hurt, and the corners of his mouth were always white and chalky from the innumerable Tums he was constantly taking to curb the burn in his belly. His fingers had been caught in a giant, dangerous drop-forge machine years previous, and they were splayed out all weird from after he recovered from being one of the first people to have his fingers reattached. He smelled like a fisherman.

My mother has no grasp of the present. She talks more and more about the past as if it is happening right now. She talks about her father in ways that paint a sweeter, more nurturing, more protective, less scary, less log-like portrait. “Hey Toots!” he would call out to his young daugher to get her away from my often difficult and apparently unkind grandmother, “Wanna go fishing??” My mother has recently taken to telling us that we need to get ready to go out to the boats. Maybe because the lake is safe for her, and where she is now, is not.

My own child is almost 8. I began to notice my mother was changing shortly after he was born, most notably when she dressed him one time and put his little sock over his shoe. My son doesn’t know my mother to be anything but suffocated by the illness overtaking her brain. I tell him “Grandma used to be AWESOME.” He says, “I know, you tell me all the time.” His favorite story about his grandmother is the time she and I were watering flowers in the yard and I noticed the neighbor’s insane, unpredictable german shepard had busted his chain and was slowly, terrifyingly, creeping up behind my mother, a predatory look in it’s eyes. “Mmm!… mmm!… mmo!… “ I choked on my words as I tried to warn her. She turned and looked at me like “What the F- is wrong with you?” and caught the dog stealing up behind her in her peripheral vision. She turned full on to face the dog, cool as steel, and meeting its gaze said only, “Hello, dog.” Then she slowly, calmly, picked up the end of the broken chain, and walked the puzzled dog home.

My kid loves that story. I will tell him “Grandma has a disease in her brain. But her heart still works and she loves you, and me, and our family very much.” And he will glance to the side with ninja eyes, the slightest upturn on the corner of his mouth, and say, “Hello, dog.”

I am sad that he will only know of her lore, and not make his own memories of her that he can tell his own children someday. Hopefully sharing coloring time with her and bead time will be enough.

My mother lives with my father in my childhood home and they will live there until they don't anymore. I don't know when that will be. My parents worked hard and saved their money so they could live a long life and at the end of it, be too rich to qualify for help, and too poor to pay out of pocket. Losing your mind is expensive.

My father is a kind, patient, amazing soul who I'm pretty sure would bleed gold if you pierced him. He loves, loves, loves, my mother and is willing to endure her needing to be no more than 12 inches away from him at all times, which, would drive me bonkers. I used to say that my Dad and I shared a common need for space. But I guess I can't say that anymore. Maybe he still does love space, but loves, loves, loves my Mother more than he loves space.

Most mornings we have help coming into the home, mostly to entertain my Mom while my Dad tries to catch his breath. The help will increase as we continue down this journey. My middle sister comes on Tuesdays and I try to come at least one day of the weekend. I help with grocery shopping, some household chores, and entertainment, which includes sorting buttons, coloring, stringing beads, and other tactile things. Sometimes I bring my mandolin and play for my mother, and she taps her foot and applauds and acts like I am a genius. But that is not new, she always acted like I was a musical virtuoso.

My eldest sister carries the majority of the burden, jugging the bureaucracy, and organizing bills and payments, and other things that probably suffocate other families. She visits 2-3 evenings, and shares a dinner of the soups my husband makes for my parents. The first time I saw my sister feed my mother I was surprised and uncomfortable, but clearly they had done it many times before since my mother sometimes forgets how to get the food in front of her into her mouth. I can remember what it was like to have my mother feed me cottage cheese and applesauce. She would do that thing where she would reflexively open her own mouth when I opened mine.

If she could have seen how this was going to play out she probably would have laughed. She is tiny now and has been for years. But she had been heavy most of my life. While she could still put words together confidently, she would tell people "I used to be a fat woman!" When I was a kid she also used to say "If I ever start getting goofy, hit me over the head with a brick." But she started to get goofy, and I couldn't.

My parents have been married over 55 years. I used to fall asleep to the sound of them cracking each other up in the bedroom next to mine. They were that young couple in the dance halls in in the center of the circle, all the other dancers getting out of the way to let them showcase their moves on the floor. My Dad brought her flowers and told her she was beautiful and doted on her. He still does. Even in the state she is in now, she has never looked better. Dad is constantly buying her new clothes and lovely inexpensive jewelry that makes her feel pretty. The last time I bought them groceries he wanted me to make sure I bought her a new lipstick. And I had to go out of my way to do it, but I did because it was important to him.

My parents are better people than they were because they wanted to be better for each other. They have encouraged each other and believed in each other and fought and laughed and danced. On my wedding day, when my need for space started to kick in, I said to my mother "I don't know if I can do this" and she said "You can't wait to marry the 'perfect person' because you are also not perfect, and that is not fair. You have to marry the person whose faults you think you can tolerate for the rest of your life."

He tolerates her and her ever-changing needs and oh my God he loves, loves, loves her. For the rest of his life.

My mother made it a goal to make it to the end of her life without ever having to pump her own gas, and she made it. I would tell her she really should learn to do this, but she said “Nah.”

My mother was an excellent swimmer, a gardener, and a duck hunter in her early days. She loved summer, and peanut butter, and reading, and mechanical pencils, and scotch. She hated winter and itchy fabrics. Due to repeated sinus infections her sense of smell was diminished so when she was concerned she stank she would ask me “Do I stink? You gotta smell me. You know I don’t smell good.”

She was stubborn and funny and loved to learn. She couldn’t whistle. But she could wiggle her nose. I am the only one of her three daughters that could do that too. I also am the only one that has her short pinky too.

She was extraordinarily brave. She IS extraordinarily brave.

The last time I took my mother to the doctor, she brought along one of her many grown-up coloring books she was working on. Her doctor, a gerontologist who is just so, so, wonderful, expected this and started out their appointment by taking the book from my mother's hands and marveling at her colored penciling on the pages. She smiled and raved at how beautiful they were and shared them with the intern joining us while my mother beamed. "Look," the doctor said, "Amazing. This shows that the visual cortex is still intact. Remarkable!" She looked my mother in the eye. "Good job!" She told her. My mother was delighted. And I began to desperately wish there was a refrigerator in the room with us that we could have stuck Mom’s page to with a magnet.
I work as a production graphic artist for a large company. It is part creative, part engineering. I feel safe in this role, I like the rules. My degree is in fine art, but I never really felt comfortable there or really felt like I was hitting the mark. As my father has begun rifling through 50+ years of stuff in boxes to get rid of, and get ready for wherever my parents will live next, I see over and over again how I could feel that way. I just could never be as good an artist as my mother was. And hey, I am not putting myself down. I can do many things well. At one point I could even juggle, so there.

My mother was a fabulous artist. The paintings and drawings and sketches that keep emerging from these buried boxes are fantastic. My childhood smelled like turpentine. She made sure I always had plenty of crayons and markers and I loved when my mother would take me along with her to the artist supply store and I loved how it smelled and I loved to run my fingers through the brush ends at the store, even though I grew up to learn that that was not good for the brushes so I don't molest the brushes anymore. When I was in kindergarten I remember feeling confused because the teacher wanted to evaluate us kids on our ability to color within the lines. But my mother just shrugged and told me "You don't have to color inside the lines."

And she wasn't trained, she could just do it. Her lines and composition and perspective were right on. That was one of the things that started to tip me off that maybe something was wrong. Her art started to get wonky and her sense of perspective got skewed.

Mom loved to paint pictures of barns, and she and Dad loved to go for car rides, so he would drive them around and she would see barns she thought were beautiful and come home and paint them. My friend Pam asked her to paint her a barn, and that was the last one she ever painted. When I go to Pam’s house and see it hanging in her living room I can’t help but notice that the perspective is flat and twisty, and her barn looks like something in a Tim Burton movie.

She could paint, and she could dance, and she could sew, and I don’t really know if she could cook because by the time I was born she didn’t feel like it anymore. But she could make an amazing lemon merengue pie with the most beautiful peaks of merengue that she would tease up with a butter knife into a little grouping of golden curls on top of the pie.

She was amazing. And when we were in the hospital and the big Herman Munster looking neurologist came in with his three young interns, and he started talking too loud to her, and giving her commands to see if she could understand, and eventually gave up, I should have said that. When he asked me “What happened to her?” I should have replied, “She was amazing.” When the three young interns looked at her with pity in their eyes at her black eye and broken nose, speaking nonsense, I should have said, “She was amazing.” But I was too busy trying to write down everything he said so I could report back to my family and I was too busy trying to get the correct spelling of the medicine he wanted to put her on. So I didn’t. And they filed out the door. And I should have opened the door behind them and said to open hallway of the hospital, “She was amazing.”

My mother is like a toddler now. Stumbling around, getting too close to danger, flitting about from spot to spot for brief periods until she gets bored and she stagers off to another station. She has always had bad balance and was prone to falling, and the deterioration of her brain exacerbates this. She gets cold, and when you try to cook something on their stove, she will walk up and try to warm her hands over the burner.

"Hot," you would tell a toddler, "No." You would teach a child this is dangerous and they would learn not to put their hands too close to the fire. I can remember her teaching me this same lesson. "Burny, burny," she would say.

But my mother is not a toddler. She has lived 76 years and does not want to be spoken to this way. If you try to talk to her like this, she cannot absorb the lesson and will look at you like you should go directly to hell. If you try to take her arm and lead her away she will lock up and refuse to move and, God love her, (as my Mom would say), she is 4' 6" of iron strength. It's like she has gathered up an entire incarnation worth of physical power just to cement herself to the kitchen floor so she can stand exactly where she wants to stand, and you, can go, directly, to hell.

When you have a toddler you can sit with them and look at a book and show them important things you want them to know and then get excited when the kid says it back to you. This happens in reverse with my mother. She looks at family pictures and they are just filler on the pages. She and I were looking through photos and a picture of my husband came up. "Him," she said "I know him. He is good." I thought this was funny because I always said I married my husband because he reminded me of my mother. They have the same style of integrity and loyalty and commitment to justice. And yes, it is true that he is a good man. And he will still be a good man the next time she sees his picture, but chances are, she will no longer know this.

It is interesting the things my mother retains. The last time she was in the hospital, which was because she had another seizure and fell forward and broke her nose, she and I were alone in the hospital room for a while and she would occasionally try to communicate something to me but I just wasn't getting it. Finally a commercial came on and she looked at the tv and said "TOOTHBRUSH!" Well shit, get this woman a toothbrush STAT! She sat in her bed and brushed with that same sort of muscle memory driven rhythm that I had seen her do a lifetime ago. She ties her shoes the same way she always did. But I can hardly stand to watch her do that because her balance is so bad I'm afraid she's going to bend over and take a header.

When I told her recently that I am her daughter, I also told her "You have been a wonderful mother."

"What did I do?" she asked me.

"Well," I said, "you were fun, and loving, and generous… "

"Gen…? Gener…? What is that?" She was studying my mouth as I repeated the word, trying to watch and learn and repeat it herself. But it got all tangled up in there and never made it's way back out of her.

"It means you gave people everything you had," I said.

"I don't know what you are saying," she said, as she finally gave up.

Like a toddler, my mother uses her handful of words to share her dissatisfaction with you. "DON'T TAKE MY SHOES OFF!!" she hollered at my Dad and I as we tried to get her wet socks off after she stepped in a puddle. Trying to explain to her why she needed new socks was pointless, so he tried to distract her while I tried to peel the wet ones off. But she wiggled and kicked in an effort to keep them on. We finally got the new socks on her. "Those were bitches, weren't they?" she asked as she glowered at us.

Yep, Mom. They were.

And also like a small child, she is sweet, and loving, and wants to be touched kindly and cuddled. When she was in the hospital she patted her bed, inviting me to get in with her. I did, and we sat and watched tv, and I had to change the station away from the news my Dad had on because something on there exploded and frightened her and she shouted "FIRE!" And I couldn't stand watching the hospital tv station that only showed sunflowers because I thought it was too stupid, so we turned on the food network and watched a woman peacefully and passionately make a delicious looking pasta bolognese, and we held hands while she rested her head on my shoulder.

My name is Sara. I am my mother’s third and last daughter. My mother has three types of dementia – Alzheimer’s-type, frontal lobe, and vascular. It seems that when people learn my mother has dementia one of the first things they ask is “Does she still know who you are?” I guess that is what people will think will be the most devastating to them, the thing that will just make their heart shatter, the turning point where they say well that’s it, I am officially really upset now.

Today I visited my mother, and she met me with unusual indifference, and I figured out she had no idea who I was, and you know, really, it wasn’t the most suffocating thing that has happened. I mean sure some tears came rolling out of my eye holes as I was driving home, and shortly after I got home I assumed the fetal position on the kitchen floor while my husband sat next to me and our newly adopted dog applied her large, cool, moist, dog nose to my head trying to figure out what part of me was broken, but I think maybe this didn’t stab me in the heart as deeply as some other events on this journey. Maybe because I expected it would happen someday.

Ok, it happened, check.

There have been things that have cut me deeper. When neither one of my parents remembered it was my birthday. Or eight years ago, in the beginning, when she would mock me, or when I would try to talk to her about my concerns and fears about my new baby and she would roll her eyes at me and reply “Whatever.” Or the first time I had to wipe her. Or also in the beginning when I felt like I kept pulling a fire alarm no one wanted to hear and I would say to my family “I think there is something wrong with Mom,” and I would hear back things like you are wrong, you don’t know what you are talking about, mind your own business, etc. That pretty much sucked too.

I attended a program by Martha Borst, who is awesome by the way, and she had this whole thing about “being right.” Looks like I was right about Mom. There IS something wrong with her. But Martha would say “Oh you want to be right? Yay! You were right! Congratulations! Now what??”

Now what.

My mother's indifference to me today was unusual because prior to that when I came around she would want to hug me and say "Oh it has been so long!" Even if it had just been a few days. Today she regarded me like the mail carrier. Or someone passing by her in the grocery store. And I was like come on old lady, we have history, throw me a bone here. So I asked her - "Do you know my name?"

Mom's frontal lobe dementia affects her emotions, and her ability to use language, so I wasn't really surprised when I got an answer that was nonsensical. Later I tried again, not so much hoping she would say "Of course I know you! You are my babygirl, and when you were born, and the doctors put you in my arms, I looked at you and I knew what Mary must have felt like the first time she held Jesus." Because she used to say that to me. No, I tried again hoping to get at least some little spark of connection with her again. But instead I got garbled language and fragments of delusions from her childhood.

As we were sorting buttons later I smiled at her like she had won a prize and said  “Hey. Did you know that I am your daughter??” She was flabbergasted. “It’s true,” I told her. “My name is Sara. And I am your daughter. You have three daughters and I am your youngest. The baby.”

Wide-eyed, she said “I have to sit down."

And so she did, and I tried to tell her brief little stories about her children and our life, and how amazing she was, and she sat there looking at me like “you have got to be shitting me.”

But no, I wasn’t. And by the time I had gotten into my car, and backed down the driveway of my childhood home, she had already forgotten everything I had said.