My mind is now my anchor
I have three soundscapes going in my headphones. Fireplace, Rain on a Tent, and Summer Night Thunder. They are set to animate so I cannot locate the repetitions. I have two cases of Gatorade Zero at the ready. There has to be tear replenishment or the headaches are unbearable. Fuzzy blankets are around in case my heart feels empty. I have to hug them lately to feel less alone.
Caregiving is one of the loneliest seasons I have ever lived. There is not one person out there who has the guts to look me in the eye and meet me where I’m at. Every single friend and family member has distanced themselves from us.
The loneliness is the loudest in the evening. Tonight is really loud because two days ago I was forced to come to terms with the fact my husband can no longer see me and cannot respond to my grief and anguish. He is no longer my partner in the sense of the word, and needs 24/7 care. He is a shell of his once highly intelligent self. He can no longer navigate technology and his work was in the tech sector. I am now his brain and his alarm clock and his reminder to eat and bathe. He can no longer be responsible for our cats and help feed and care for them without reminders.
I was forced into finally separating my caregiving from my marriage vows. Every single brain drop felt like he was doing it to me and that is not how Early Onset Alzheimer’s works. Every missed cue, every dropped ball felt like a slap in the face. Regardless of if logical brain understands the disease, the emotional expectations you have regarding your partner do not just magically vanish overnight.
Every single thing that was an anchor in my life is now gone except my own mind. Sitting alone with your own mind all night in this season is a special kind of hell. The brain plays tricks and asks what you did to deserve this. It wonders what you did to make every single person ghost you during the most crucial time in your life when you need external support. It reaches for blame and attempts to make sense of why no one was tested early when they found out a maternal Aunt passed away from the disease. Would any advance knowledge have helped? Probably not, because of all the ghosting from humanity.
A Substack post landed in my inbox today that changed my mind about writing. It opened my eyes, because she was brave enough to name all the real feelings a caregiver has. She was still standing afterwards. I felt so much less alone. Reading a voice that is similar to my own experience is both heaven and hell. I feel for her journey, but I also see the importance of getting the real unvarnished voice of raw pain and anguish out there.
The Totally Awesome After - Suzanna Quintana- What I'm not supposed to say about my mother
Caregivers are the most underappreciated, hidden group of society and the broken system where I live is cruel and unfair and exploits your love and devotion and runs you into the ground before lifting a finger to help out. More voices need to be heard. We are people too.
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