My mother’s dementia has made me crazy, frustrated, furious, heartbroken, envious of other people who still have intact parents, and this week brings the sad. Crying in my Greek hotel room sad.
My mother’s phone number is blocked because she calls most days 10-30 times a day. It will run in cycles, 10 times in a row minutes in between. I check the voicemail several times a day to mainly see if she says something about needing something specific, like milk or orange juice as she likes to have breakfast in her room. Most of the time her calls these days are full of confusion, talking about talking to or seeing people who are deceased. Full imaginings of being on a trip with them. She will call me leaving a message as if calling her deceased sister. It’s real fun, not, when your mom doesn’t know you FYI.
This week while I am on vacation is no exception to the calling. Even if I have it written on her calendar or she has on paper by the phone, her mind no longer works logically to check such things or remember she wrote them down.
This week’s calls have brought a fearfulness in her voice. More confusion, more “I don’t know what I am doing” or “where I am”. It occurred to me today that my whole life I never saw my mom afraid. She showed only calm certainty I would be fine when I was wheeled into open heart surgery at 19. Not only did she show that calm later I asked if she had been worried about how it would go she said “absolutely not. I knew you would be fine.” She was shocked by the doctor when he said to us I would need to have the surgery she wasn’t afraid, just not expecting it. When I nearly died and my premature newborn son was touch and go, she wasn’t afraid, worried but not scared. When my husband died her voice was sad and she couldn’t be with me right away but it was still strong and comforting. When my dad died and she called to tell me after the doctor called her when she was on her way to the hospital, she was crushed, crying, and in shock but not afraid. She wasn’t afraid after to have to create a life without her beloved. She didn’t hide emotions from us as adults, we know when she’s sad or mad or glad. As children she was steadfast. I did see her sad when her parents died and I was in my 30s then. I saw her sad when my dad’s mother died and other relatives when I was a kid.
We didn’t know or see fear in our mom. It wasn’t she was hiding it to be strong for us, she didn’t feel fear.
I am sure much of her strength has come from her faith. She’s the OG church lady as I affectionately call her and if there is a heaven she has a fast pass. She’s a Jesus loving Christian, not the fascist faux Christians who use a Bible to beat people and skip over all the “Jesus loves me this I know” that I was taught in vacation Bible school and she walks that talk.
My mom still prays everyday I am sure, and I know she’s still a believer but now she has fear. I cannot hate this more for her if I lived a 1000 years. For me this feels like she’s being pulled further away from the shore where I won’t be able to reach her at all soon. Yes dementia has been taking and drowning my mom incrementally since about 2018. But this hits differently.
I think signs of fear popped up early in this dementia journey when she lashed out at me or us over things and was mean. That should have been our first clues. Fear makes people do and say things they wouldn’t ordinarily. It was probably fear that something was wrong and she couldn’t get a handle on it.
I told my children at a young age we don’t do fear based living. It doesn’t mean we don’t get scared or worry, I can be a champion worrier after all. Bravery and courage aren’t necessarily the absence of fear, it’s doing the thing to be done anyway. I am sure in some ways my mom’s fearlessness imprinted on me and I am only just realizing this. I could tell her thank you for it, and maybe I will when I see her. And then she won’t remember I said it. She doesn’t remember any of the important things we have talked about over the years. Which hurts, deep.
I have a memory from the First Christian Church in Pecos, TX. I am about 5 or 6 years old. After Sunday school I would join my mom in a pew in the sanctuary for “big church”. We had to be quiet of course and often I would play with the pencils from the holders in the back of the pews, with the offering envelopes I would fold and make them a pup tent for my pencil campers. If I got too squirmy or clacking pencils my mom would look down with a pale pink painted nail finger to her smiling lips to remind me to be quiet. Or put her hand lightly on my leg or hand. Then I would sit back up straighter, take her hand and stroke those pink finger nails on her hand marveling at how pretty they looked, smooth.
I don’t know how to soothe my mom like she did me as a kid or for that matter as an adult. I have cried in so many places mostly alone about my mom in the past 6 years. I hope that quickly after she leaves me a message, that the fear and confusion is forgotten for the moment.
I say this often but I do not want to suffer this way and hope dementia doesn’t take me out to sea. I don’t want my kids to cry for the losing me while I am still alive but not the fearless mom they know me to be. I choose to believe it won’t come to that but that crystal ball is out of order to tell me for certain. Maybe a tell tale sign I should seek help will be if I start to be afraid. Maybe that is a lesson for me to tuck away.
All I know for sure is dementia is one of the worst things that can happen to a person. Because it takes their personhood. Shatters the family watching their loved ones’ mental capacity disappear, what made them, them. I don’t know what the lessons are and I don’t believe that everything happens for a reason per se. More like most things happen whether you want them to or not. This is in the “or not” category.
I don’t know how many more emotional undertows this disease will bring me. It’s like the waves are emotions coming to shore while at the same time I watch my mom out in the surf. The buoy rope doesn’t reach. All I can do is watch and cry. There’s no saving her and that is the hardest thing of all.
TX Travel Girl 