She lowers her head as we sit on the couch. She looks me in the eye and holds my hand. I recognize her pear shaped diamond ring and her hands are aging, but they are soft and warm. She asks me to hold her. I wrap my arms around her wondering about the last time a single person did this without her requesting it. She has to push down the pain because she has nowhere to spew it or release it or vent. She mentions that she has forgotten how important human touch is. She goes on to tell me that her husband loves her with his whole heart and when I ask her how she knows, she states he gives her money. That is all he knows you see, he pays people as if money and love are synonymous. I look down realizing that my mom has a skewed perception of love. I count my lucky stars to have my husband. I squeeze her and I feel her hands shaking, her Parkinson’s gets worse the more upset and stressed she becomes.
She is controlled with every single step she takes and he questions who she is talking to and why she needs to go to another room to chat. It’s as if she is in prison. It’s been 28 years of this. She takes it and she stays. She dare not question his authority. She dare not have a voice because he’s spent years trying to keep her small and quiet and he’s done a good job at that. She feels small, as if she does not matter because she is ill. She used to be confident and strong and assertive and she raised me as such, but that woman is long gone.
I stress to her that we all deserve to be heard, held, and that every human life matters, despite how low our voices are, how extreme our tremors become, or how bad at mathematics we are due to dementia. She’s lost her sense of time, when I say meet me in 45 minutes, she shows up in 15. It’s hard for me to wrap my mind around the fact she’s lost her sense of time because the mom I once knew was a math teacher.
She forgets who my friends are even though they’ve been in my life for decades. She has a vacant look in her eyes. I want to pull her back in. I want her to be the vivacious mom she once was, the socialite, the sharp dresser, and the mom that would turn the volume way up and rock out to songs like, “Rock Steady.” I remember my mom being happy, with fashionable earrings, pretty fake nails, and bright-colored clothes. She was many students favorite teacher because she cared and genuinely loved kids.
She cries. I think she feels she can be safely vulnerable with me. She’s not really allowed to cry in front of her husband. He gets mad. Her sisters have passed away and she has few friends. I’m the only one that talks to mom, really. Her husband is blind, deaf, and not warm. He does not initiate kisses or cuddle time according to mom. I sit and cuddle with my her on the hotel couch, like a mom and child, but reversed. I’m holding her and she is being held like a small child. I feel like the parent in this relationship.
She rarely smiles and so I try to come up with things to make her laugh. I am unsuccessful. Thank God for B- he always knows how to get my mom to chuckle. She does not feel seen, so I am her captivated audience. She does not feel heard, so I hold her hand and look in her in the eyes and I hang on her every word, even if it is painful to hear and hard to watch. I save my tears and my sadness for when I am alone. I do my best to subside my pain & push down my tears so she can spill her guts to me. She feels close to me and safe to be who she is. & when I’m all alone, I let all those tears out and I release my pain. I mourn the loss of who my mom once was.
I knew her before she became ill. I think that is the hardest part of all. I knew her for 44 years before she got sick, really sick. The mom I once knew was as a talented photographer, a beautiful flower arranger, a stained glass creator, a gardener, and vivacious and talkative. & now, she does none of those things. She’s been made to feel as if her illness makes her less than, as if her presence, today, matters less because of her dementia and Parkinson’s and schizophrenia. It’s bullshit.
I told her that no matter what, her soul and heart are the same as they’ve always been. I learned how to be strong from my mom; she’s no longer strong. I learned how to be caring from my mom. She’s still caring. I learned how to be affectionate through my mom. She’s still affectionate.
My mom’s mouth is agape. It looks as if she is trying to catch flies at times. She does not bother wearing makeup or dying her hair blonde any longer. She wears solid colored clothes with a gold cross around her neck that she wears 24/7. She shuffles her feet and often uses a cane to aid her walking long distances.
I am her daughter and I am all she has. I will be the one to take care of her when her husband passes away because I’m all she’s got. All others have left her. It’s heavy, but it is what I have to do. She is my mom and she matters and her life and her voice and her fingerprint and her words and her footsteps matter. She says really crazy things and I take them with a grain of salt and just write them off as her being ill.
There are many that she has hurt that can’t get over the hurt she has caused. I look beyond it, but not everyone can. Some don’t care about her at all. They don’t care about her well-being or where she will end up or her medical care or her psych care or her preferences at all. My mom is not stupid, she is ill. Her perception is off, she’s unrealistic, not sensible, fragile, frail, and could break at any given moment. I tip toe around her so not to upset her because seeing her cry makes me sad.
When she goes home, who will watch over her? Her husband can’t see or hear or go to the bathroom by himself. He’s a bully and he treats her as if she is under him, as if he matters more than her. It’s bullshit. No human life is more important than another. We all matter, we all count, and we are on an equal playing field. I will always love her. It’s hard being around my mom and I wish it wasn’t. I wish I could fully breath around her, not care so much, not get so sucked in, and not get so wrapped up with my mom’s sadness. I find it nearly impossible.
Her pain is mine.
I weep for her.
I am sad for her because all she wants is to be
seen, heard, valued, and treated with respect.
Her face is longer and drooping these days. Her eyes are squinted and more vacant. Her hands are soft and warm. Her heart is full and giving.
We need to stop pointing fingers and start hugging more. We need to stop pushing away those that are different from us and start pulling them in. We need to hold more hands and wrap our arms around each other and lock arms when we go places. We need to love people.
I love her and I will take care of her and I’m all she has in this big scary world and I’ll do my best to be the best for her.
I love mom despite her ailments. I love her even though she pisses me off. I love her even when says the wrong thing. I will hold her hand, & tell her I love her more than needed. I will be present in her presence and focus on the good of who she is because there is still so much good about my mom-her heart, her soul, her smile, and her calm demeanor.
I love her and I hope others can come around to love her as she is, today, and stop focusing on who she once was because that woman is long gone. It’s hard to love my mom for 44 years, unconditionally, and then when she becomes ill, I am expected to love her, unconditionally, still even though the two women don’t resemble each other. I am still mourning the loss of who my mom once was. It’s really hard.