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.