What Did She Say

My mind is always open

I’ve been grieving for my mom for about 7 years now. It’s a strange thing to be grieving for someone who is still alive. My mom was diagnosed with early-onset Alzheimer’s in her late 50s, and the decline has been steady, sometimes subtle and insidious, sometimes drastic and obvious, but steady. Consistent. Like the waves of the ocean. Sometimes small, sometimes substantial, and sometimes colossal, mammoth waves that knock you down. Just as her decline into clutches of Alzheimer’s has been steady, so has been my grief. Like the waves of the ocean. Sometimes small, sometimes substantial, and sometimes colossal, mammoth waves of grief that knock me on my ass. The kind where I have to pull over on the side of the road and cry, let the waves wash over me.

Photo credit: www.desktopanimated.comocean-waves.jpg

Photo credit: www.desktopanimated.comocean-waves.jpg

The big waves have been at bay for a while. I didn’t realize it, but I’d moved into a fairly amicable relationship with my grief. Just little waves that had me bobbing ever so slightly for the past few years. (Save for the screening of Still Alice I saw in the theatre, where I leaked from my eye holes for the entire movie, and then bawled myself into a big snotball as the credits rolled. Or watching and listening to Glen Campbell’s I’m Not Gonna Miss You which, of course, turns on the leaking.)

But these last two weeks I’ve been surrounded by those big mammoth waves again. My mom has been living in a retirement home in their new memory-care wing for the last couple weeks as a trial. We’ll be setting up her permanent room later this week.

This is a whole new level of grief. I catch my breath and another wave hits me from behind, or the side, or right in the face and knocks me off-centre again.

I’ve been watching as John Mann says farewell to performing in public with Spirit of the West at age 53. Let that sink in. Fifty-three. He’s slipping away – being dragged away – by this beast; it’s gotten far enough that the decision to cease performing was made, and he’s only 53. That’s just about a decade older than I am right now.

I know this isn’t about me, but it is about me. Mixed up in all this grief is fear, too. Fear that this will be my path, as well. That my children will be forced to stand by helplessly as their mother is suffocated bit by bit and snuffed out. That my partner will be tortured by watching me go from shining brightly, dancing through this life with him, to barely flickering and finally fading away, leaving an empty shell; wondering if the real me is trapped in that shell somewhere or if I’ve really gone. None of them ever really knowing if part of me can tell that they are there by my side, or if I’m truly unaware.

Much of my childhood memories involve the Catholic Church. My mother, my brother, and I attended mass weekly. Every Sunday at 11am. (Plus masses as our elementary school growing up, where my mom also worked.) My father didn’t attend with us unless it was a special occasion, such as our first communion or confirmation. So, this is something that is very much wrapped up in memories of my mom. I haven’t attended Catholic Church in years, except for the odd wedding or funeral. I stopped going consistently around age 16, as I questioned my faith and the teachings of Catholicism. My mom never fought me on my decision to stop attending, not hard, anyway. She left it up to me. She gave me roots and wings.

Last week I attended a Catholic funeral mass. A friend’s father passed away and a few of us went to support her. Given my emotional state, a Catholic mass may not have been the best place for me. Or maybe it was. We began to sing the hymn of the namesake of this particular church, St. Francis of Assisi – Make Me a Channel of Your Peace. If you’ve grown up in the Catholic Church or attended Catholic school, you’re probably familiar this hymn. I began to sing and that opened the dam. The tears flowed. I was that child again. In a place surrounded by smells and sounds and atmosphere that, to me, embodies my mother. My heart hurt. It was a comforting, yet heart-wrenching feeling, all at the same time – which is highly confusing.

On the upside of all this, a funeral is an appropriate place to cry, so I didn’t look out of place or feel embarrassed to be blubbering. I did so about three or four times throughout the course of the mass.

Being a good little Catholic girl, I had my first communion in Grade Two and participated in the sacrament every week for years. When I broke from the church, I didn’t feel I should participate anymore. When I’d attend a Catholic mass for a wedding or funeral, I would sit out and generally wouldn’t accept communion. I felt it would be hypocritical of me to do so. But this mass was different. I’ve found my way back to spirituality in some sense, even if it’s not in the Catholic-sense I was brought up in. I was feeling emotional about my mom and memories, and maybe I was grasping for some sort of comfort, for some sort of connection to her, and to feel as if things were ok again, but I decided to share in communion. I went up with other members of the parish and received. As I made my way back to the pew, I was overcome and surrounded by an energy I can’t put into words. I felt the presence of something greater than me. I felt as if my mom was surrounding me, enveloping me, and trying to tell me things were ok, that I would be ok. I don’t know if her spirit is held captive by her mind and body, or if it’s able to wedge free. But that day, in that church, in that fleeting moment, I felt as if she reached out to me.

I’m sure there will be many more twists and bends and sudden drops on this road through grief. It’s been a prolonged experience, years in the making, no end in sight. I’m not sure grief ever has an ending.

I’ve wanted to share my feelings and experiences on this blog for a long while now and never felt I was able to. I spoke up once on social media years ago and got railed for it. I’m the only one in my family who shares stories this way, this openly. The rest are pretty private people, and I don’t think they understand this. I wrote this piece for Her Bad Mother’s Basement over five years ago as a way to balance my desire to share a part of my story with their desire for privacy. As you can see, this has been a while in the making. I’ve been losing my mom piece by piece for years. When my marriage was faltering, Alzheimer’s had already robbed me of my support. I wanted to ask her so many questions. I still do. But I can’t. I feel helpless. Weak. Defenseless. Cheated. And I’m angry. And I’m sad. And I’m tired. And I’m so many things all together that I barely know which way is up much of the time lately. I want to stomp my feet and scream like a three-year-old, “NOT FAIR!”

And so I write. And it heals me.

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5 Responses so far.

  1. Laurie says:

    Dear Jackie, I have tears streaming down my face after reading your post. You are such a talented writer!
    I feel your pain & miss my dear cousin Lynda so much! Sometimes life is not fair. I lost my mom when she was 52, and I still miss her every day. Sending Hugs to you. ❤️❤️❤️

  2. I’m so glad to see you writing. Alzheimer’s is awful. It’s okay to say it stinks. Hugs xo

  3. Tricia Mumby says:

    I feel for you. I think alzh’s is the cruelest. And what else is there to say? I hope this isn’t your fate or your children’s. Sorry for your Mama, but it is saddest for those around her.

    • jackiyo says:

      Yeah. One good thing in all this is she seems quite happy and content wherever she is. She’s always been a que sera sera kind of person and has taken all this in stride. And now that she’s in its depths, she still is. It took this long to move her into a home, not because she wasn’t ready, but because my dad wasn’t.

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