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.”