Light that builds

Several times a year, I hear about promising new treatments to halt or even reverse the effects of Alzheimer’s. I’m grateful when people send me links to these stories, knowing I have a personal stake in them; but to be honest, I rarely read them. It was too late for my grandmother and it’s too late for my mother. If this hellish disease comes for me, it won’t make any difference if I’m personally informed about the latest research or not. Either it will help or it won’t. 

For several years, as my mother’s excellent mind became more and more smothered by confusion, I was angry. At her, which makes no sense. She hated and feared what was happening to her, and did everything she could to fight it off, which was nothing. There really isn’t anything you can do. I knew very well that none of it was her fault, and I knew very well that my anger was a shield put up around my heart. Anger often is. 

Lately, the wall of anger is being pulled down to reveal what sits behind it, which is of course a bottomless sorrow and terror. From that well of grief comes up memories, and lamentations. The good conversations I had with my mother were so few and far between; the misunderstandings and missed connections were so many. I’m 45 years old — almost half a century! — and I’ve sorted through enough nonsense that I think my mother and I could finally really understand each other. I’m passing through from the years of childbearing to whatever it is that comes next, and I want to talk to someone who made it to the other side. I want to talk to my mother, and see what she knows. I want to stop evading her and reveal my heart to her in a way that I never did as a young woman.

But it’s too late. I missed her, and now the best I can do is drive an hour, sign in to her dim nursing home, and watch her slump in a wheelchair. Her arms are shielded so she won’t scratch herself to pieces. She tilts, and a crust forms in the corner of her mouth. A few words make their way out, and some of them seem to mean something. She doesn’t open her eyes. 

“I like your shirt,” I can say. “You look nice in pink.” And in honesty, that is something I never would have gotten around to saying when she was present and able to hear it; and if she had said something so simple to me, I probably would have taken it as a veiled criticism of some kind. We didn’t connect well. We didn’t understand each other, at all. Now I have no idea how much she understands of anything. Something, surely. When my father unloads his medical woes to her on his daily visits, she sometimes mumbles, “Oh, you poor thing.” The same thing my grandmother said when someone unpeeled a helpless banana in her sight. 

Poor thing, poor thing. 

One of the articles I did read was about some promising therapy for dementia patients. Guess what it is? Light. 

We think of light as the thing that reveals things for what they truly are. The thing that strips away pretense, that pierces through shields. And this is true, sometimes. The light of honesty is what we need, even when it’s painful. I remember one time I was so seized up with depression, it was as if I lived outside my body, observing. I saw myself talking to my mother about my children, and I watched with detached interest as my face unexpectedly and randomly curdled up into the grimace of a tragedy mask and I started to cry, because things were just so hard, too hard.

“What’s the matter? What’s wrong?” she flew to ask, because she is my mother.

“Nothing,” I said, and composed my face again, sealing off the tears. It felt too risky to show to her what a failure I was, and how much I was suffering when I shouldn’t, I thought, be suffering. Maybe if I had told her how wretched I was, and how guilty I felt to be sad when I was so very blessed, she might have helped.

Or she might not have known what to do. Sometimes there just isn’t anything you can do. I suppose I could go and tell her now. She is still my mother, even though she has passed through the years of childrearing and into . . . whatever it is that she’s in now. It feels like it would be cruel to go and cry to her now. Maybe she’d be just aware enough to sense my sorrow and her own helplessness one more time. That’s not what I want to share with her.

But, I suppose there are different kinds of light. Light that reveals, and strips away pretense, pierces protective shields, and leaves you naked and helpless, poor thing. And then there is the light that builds, stimulates. The light that gives, rather than taking away. 

The light therapy they are experimenting with boosts gamma oscillations in the brains of mice, and this apparently makes better connections between nerve cells. More connection is good, apparently. This light therapy “preserves against cell death in mouse models,” they say. 

I don’t know how to end this essay. I don’t know how this ends. I suppose I could make the drive to see my mother before the end of the year, and see if I can make a connection one more time. Either it will help or it won’t. 

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13 thoughts on “Light that builds”

  1. I’m sorry about all of it, though not about the part where you are the kind of person who visits anyway because either it will help or it won’t.

    One of the women in my sister’s community of religious lost both parents to Alzheimer’s within the past couple years and is now well down that path herself though she’s barely 60. She’s always been, just by nature, the poster child for every pop-sci thing you’ve ever read about how to avoid Alzheimer’s, but sometimes genes are a bitch. My sister has talked about how hard it’s been to see the decline, but also how beautifully the woman’s vow of obedience has turned into making life smoother for her now. She cannot see any reason for all the restrictions on her life and ministry she has now – but it’s still possible for them to care for her within the community because her whole life has been submitting to her vow and it is so much a part of her that she continues to do so as she always has.

    Have you read “Grace Notes” by Brian Doyle? It’s a book I never would have picked up but for the recommendation by a priest friend; the essay “Their Thin Bony Shoulders” might resonate.

  2. I am facing this with my mother-in-law and find your experience at once heartbreaking and helpful. God bless you always, Simcha. Thank you for sharing your heart with us.

  3. I feel deeply for you Simcha. I know you feel helpless. I believe what you are doing for your mum is not in vain. All you can do is keep loving her in these small beautiful ways. I know nothing goes to waste with God. Nothing. I’ll pray he takes the weight off your shoulders- the loss you feel for never having had a friendship with her like you wanted, and the pain and helpless you feel for her in her illness. I pray that you enjoy (yes enjoy) her physical presence whilst you can. Her eyes, her hair, her smile. Anything. There is nothing more you can or should be doing. Your children are witnessing this and it will stay with them. And more importantly, with you and with her.

  4. I’ve read your work for a long time…I’m sorry for this sadness and cross in your life. Be assured that your mother loves you and is proud of you. All will be mended and well in Heaven. For now, all that can be done is to keep her as safe and comfortable as possible. For now, all that can be done is for you to not live in the pain of the past or the present, but rather find hope in the healing that will indeed come in the future…in Heaven…she wasn’t a perfect mother, you aren’t a perfect daughter…none of us are…not a single one… I know you aren’t into this sort of thing, but I have found help for my son’s severe anxiety by working with a nutritionist. A friend saw me at Walmart last week and recommended the book “Grain Brain.” I haven’t read it yet, but I think it says that those of us who have anxiety and depression (me, too) are more at risk for dementia and Alzheimer’s…but bad genes can be turned off with different eating habits…I don’t miss gluten and dairy…it’s been a few months for me…my teen son misses it but says it’s worth it since he feels better (he’s on 30 mg of Prozac, too, but it wasn’t nearly enough; that’s why we made diet changes for him)…you could try a short experiment and see if it helps you…I just care about you and have been a fan for a long time. You are a wonderful wife and mother-and daughter! And writer! I’ve always loved your humor, wit, and intelligence (all 3 of which I find lacking in myself)…hang in there! This is such an emotionally charged time of year, too!!! There’s extra pressure on us women to make it a perfect day or a perfect long Christmas season for our children, our spouse, our relatives, and on and on…praying for you and your momma!

    1. Yes! I also believe there is compelling evidence for preventing Alzheimer’s through very low carb eating. Some even refer to Alzheimer’s as Type 3 diabetes. I have been low carb for nearly six years. I moved my family to lower carb eating a few years ago as well. A few times a year most of us go off the rails (maybe between Christmas and New Years, Mardi Gras, vacation, etc) and boy oh boy are the physical, mental, and emotional effects real and dramatic when someone has fallen off the low carb wagon. I believe with every fiber of my being that one day we will look back on all the damage the food pyramid did and wonder how it is we could have ever fallen for such obvious garbage medical advice – worse than leeches!

  5. My mom died from Alzheimer’s almost three years ago. What we learned too late is music helps a lot. Make a CD or playlist of the music she loved and knew best and find away to play it for her. We did this for my mom and it would calm her down when she was agitated. Like I said we didn’t know this until she was beyond speech. Now we are doing it with one of our elder sisters in community and the difference is remarkable. She is actually coherent and lucid for a few more minutes and at times hours in the day. It won’t cure anything but it helps. I’ll be praying for you. I understand in some way what you are going through. I entered religious life at 26 and my mom was already in the early stages. She never knew me as an adult and our relationship never matured really. It’s hard.

  6. I remember well my anger at my father when he started to slip. As if I could make him better with impatience and disapproval. I’m so sorry.

  7. Jesus spoke to them again, saying, “I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life. Jn 8: 12
    Somehow we always assume that light in the darkness should make life easier, when sometimes the best it can do is remind us of who we are walking with as we face the dark and shadowed edges of pain and uncertainty.
    Even if your mom can not put name to your presence when you visit her, together you walk in the Light of the One whose love you share.
    Cling to the Hope that there will be a day when you share in the fullness of that Light and life in a place where words don’t get misunderstood and we are brave enough to let down the armor around our hearts. In that place with the aid of Light you will be able to make the connection that you have so longed for and there will be more than enough time to heal and relish your relationship.

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