Snuggle up, little man. It’s a tight fit, but I think this recliner will still hold both of us.
We don’t get this chance very often. I used to wake up in the middle of the night a couple of times a week, but not so much recently. I’m just too exhausted. I guess it’s not that different for you. You’ve never been a great sleeper, but once out, you are usually out for the night.
But somehow, tonight, it was just meant to be. It was about 3:00 a.m. when I realized I wasn’t going to get back to sleep. I had just been reading in this chair for a little while when you came in and I was just ready to get back to sleep. It’s cold out, so we have two blankets, the Denver Broncos throw that your mom made for me at my feet and my old Mexican blanket covering us both. It’s almost 5:00 a.m. now, but it’s the weekend, so I don’t have to get up for a couple of hours.
We were just drifting off when your mom turned on the light in the kitchen, adjacent to the room we’re in. She was never one to get up in the middle of the night until recently. But now, it happens a few times a week; she just gets up, grabs a snack or something, and heads back to bed. Insomnia can be a side effect of the Aricept, so we talked about it with her doctor, but so far, it’s not enough of a problem to warrant a change in dosage.
“Mooooom” you call out with mock indignation, almost conspiratorially. This is our time, yours and mine and she recognizes it and quickly extinguishes the light with an apology, heading back to bed. You snuggle closer, and we both manage to drift off.
Since you’re an only child, moments like this feel like a theft. It’s something that should be shared by all of us, but of course, we can’t be together every moment. Still, it feels like I’m stealing from her, taking these hours just to myself. But your mom has always been good at letting me have these moments with you, even though she’s a bit jealous. The first came the day you were born. She’d been through more than twenty hours of labor and an unplanned cesarean section, so, after giving you a quick kiss through her oxygen mask and with the help of some nice drugs, she took some rest time and I got the first couple of hours of your life just for myself.
Of course, she was jealous later, but she was happy I’d had the time to connect with you. We talked, you and I. I introduced myself, and though we’d been speaking for months, I’m sure the acoustics were a bit different with you on the outside. You registered your complaints about being yanked from your warm home and I tried to make you comfortable in your new one. On the nurse’s advice, I gave you an ounce of formula, the only thing you’d eat other than breast milk for nearly eight months.
There were more of these times. I was the first to see you turn over, one of those small baby milestones parents make much of. I don’t remember the details, but I think I was getting you dressed after your bath. Later, I saw you walk for the first time, just a couple of steps from Grandma to me. It was at your first birthday party, just a few days before you actually turned a year old. It shouldn’t have mattered, but somehow I took pride in the fact that you took those steps before the year was up.
Jealousy aside, your mom always expressed some satisfaction that I got to witness these milestones. She knew that she had more time with you overall, so there was some consolation in the fact that some of those special moments seemed to fall my way. Still, there were times when I thought I’d taken something from her.
Mom stayed home with you because it’s what she wanted. She’d been a teacher, a secretary, a youth director, and who knows what else, but being your mother took precedence. She wanted to spend those formative years with you, share that time, and teach you all she had to offer. Now that working is no longer an option, she’s an artist, drawing and coloring at a frantic pace. But lest you ever think that our decisions were made by money, health, or anything else, I want you to know right now, her choice was always to be with you.
It would have been really hard for either of us when you were little had you favored one of us over the other. Maybe that wouldn’t be the issue if you had a sibling, but at the risk of living vicariously, we probably both put a lot on you. And we were both glad that you were willing to show love for both of us without favor.
It’s changed now. I don’t want you to feel guilt or responsibility about that. God knows, I take no joy in being the favored parent. As we lay here together, sleeping, I know that we both need this time. In all of the anxiety and uncertainty that seems to surround us, I must represent stability, constancy, and, I hope, love, in your life. I do feel responsibility for it, and guilt at my inadequacy in trying to be what you need.
There are so many things I’d like to say to you, mostly on your mother’s behalf, because she can no longer say them herself. Just as the beta-amyloid proteins have clumped together to form plaque in her brain, and the tau proteins are tangling her synapses, so her thoughts are sticky and tangled as she tries to express them. You’ve noticed, I know.
I have compassion for anyone affected by Alzheimer’s disease at whatever age. For the old, it robs them of their supposed “golden” years, stealing both memories and function at a time when they’d like to be relaxing and enjoying life with a greater sense of leisure.
But reluctant as I am to compare miseries, there is something uniquely cruel about the effect this has on a younger person. “Early-onset” they call it, as though the sun were somehow setting prematurely on a life, without choice or input from the individual involved. It hit your mom, in her forties, just as she’s achieved some of her most important goals, stability, family, and a son she loves more than life. Now, she’s being robbed of all of these things, and we are being robbed of her. And though we should avoid comparing even our own frustrations, you and I should remember that her challenge dwarfs ours. She’s losing her memories, her ability to concentrate, to focus, and to organize the things she cares about. She’s already lost much of her independence, starting almost a year ago with her driver’s license.
None of that is your fault, your responsibility. I hope you know that. I want you to be kind, even as I know you don’t really understand what’s going on. We’ve talked about the disease, but I fear that you really have no idea what’s going to happen in the future. You talk about mommy getting better and I hesitate to tell you that we are quite certain she will not. I can’t nurture false hope, but I refuse to squash your dreams, so though it may be a major mistake, I leave you with some confusion.
Though you can’t comprehend the future, I’m realizing that the past and present are more challenging for you than I’d thought. At eight years old, you’ve seen some of her symptoms for at least half your life. The diagnosis is more recent, just eighteen months ago, with our actual acceptance of it coming several months later. But it is still hitting us in stages, as each new symptom, each unexpected behavior, manages, surprisingly, to surprise us anew.
There are so many things I worry about, the most pressing of which is your relationship with your mom. Her love for you is boundless, but your frustration with each other is palpable every time I see you together. You can see her impatience, but you can’t understand it, and I hate to ask you to. I’m going to try to explain what’s going on with whatever tiny bit of understanding I possess.
Your mom is a patient woman; she is. What has happened is that she can no longer process things the way she once did. She cannot multitask; she cannot handle multiple sources of input at once. Chaotic situations cause her anxiety, sometimes quite a bit of it.
You’re not chaos. But you’re an eight-year-old boy, one full of energy, passion, and wonder, all traits that come from your mom. I see so much of her in you, it both thrills and frightens me. It makes me love you both even more, and yet I fear for your relationship, especially the future of it.
So, when you display your energy, in all of its various forms, it frustrates her. Because it represents to her a loss of control. She’s become a kind of parent she never expected nor intended to be. She’s become more authoritarian, more rigid. She’s not doing it out of intention, rather, she’s grasping desperately to whatever threads of control she might still be able to maintain. If she needs to remember what she was looking for in the refrigerator, you asking an innocent question isn’t just a momentary disruption as it might be for me. It’s a potential derailment of her train of thought, her ability to function. Your question is normal; her reaction is a result, not of the question, but of the disruption, the derailment, the loss of control of her environment and her surroundings. She focuses better if she can keep things simple and if there is one thing little boys are not, it is simple.
You talk back. Of course, you do; all kids do. Sometimes, you’re disrespectful, and I don’t like it. But sometimes, you’re just explaining yourself and I see her trying to shut you down. She can’t hear it, not because she doesn’t want to, but because it derails her train, makes it skip the tracks, which she’ll not find again when the interruption is over. She just wants to you to comply, to do simply and quickly what she has asked because if you do, she’ll be able to remain in a more comfortable place, if not on track, at least in the vicinity of it.
One thing I want you to know is this isn’t the kind of parent she wanted to be. What’s maybe more important is that the very behaviors she is frustrated by now are ones she admired in you when you were younger, ones she wanted to cultivate. She wanted you to have all of the confidence she never had when she was young. She wanted you to speak your mind, to make your way in the world without hesitation or deference. Now that you do these things, she can’t handle it, not from any hypocrisy, but from a diminishing ability to process the world around her, unfortunately including the parts of that world she most loves, namely you.
In her own childhood, her intelligence was her most prized possession. Your mom got nearly straight As in school, just short of being valedictorian. Her intellect was an important aspect of her self-definition. In arguments with her own parents, she would wield her large vocabulary as a weapon; it provided her with the power and locus of control otherwise typically denied young people. In her mind at least, it evened the odds.
Now, she overreacts, jumps on you for small things, transgressions, both real and imagined. I know it and I know you don’t understand it. I wish I could help you more, but too often, I find myself caught by surprise as well, annoyed and frustrated by the behavior she cannot control. You are a rambunctious kid, but you are also a wonderful, warm, sensitive person. I see that part of you as well as you listen to her repeat herself for the fourth time, when you help her find her cell phone for the fifth, or when you patiently show her how to use the television remote.
When your mom snaps at you for some real or perceived misbehavior, blame the plaques and tangles. Whatever happens, do not allow it to affect your sense of self-worth and esteem. And, try not to let it diminish the remaining time you have with your mother; as challenging as that might be; this time is precious, precisely because it is limited.
A counselor at a nearby senior care facility put it to me this way: you’ve been given a gift. You’re going to be forced to learn a level of patience and understanding that no child should ever have to. It will make you grow as an individual. Other children get a pass; you get an early lesson, one that could turn you into a more compassionate adult. Tears came to my eyes as she told me this, not because I disbelieved her, but because I fear the painful trial facing you, a form of childhood boot camp from which I cannot protect you, no matter how much it is not the way I’d ever want you to learn even a valuable lesson or character trait.
So, I find myself in the role of protector, defending you when she snaps, picks, or misunderstands. I want you to speak kindly, learn patience, treat your mother with the respect she deserves. But when she’s jumping on your wrongly, I intervene in ways I’d never have expected or wanted. Parents are supposed to show a united front in front of their kids, supporting one another, right or wrong, and discussing disagreements in philosophy privately, out of your sight. But when I see you, wrongly accused or wrongly chastised, my inclination is to step in.
There’s another thing you’ve seen that I wish you hadn’t. I’ve had to make many decisions for the family now. I pay the bills, organize the household (to the extent that it is organized), help with your schoolwork, and plan trips and events. I do these things because I have to now, not because I am better at them. Many of these tasks were once her job, part of her role as co-parent.
Don’t ever think that it is the father’s job to make family decisions. It has become your father’s job, not because it should be or because he’s any good at it, but by default. Marriages are supposed to be equal, parenting as well, and when it’s your time to take on the role of husband and father, remember that. The example you are seeing is borne of necessity, not viewpoint. These are our circumstances, not our values.
Too often lately, it’s become you and I, united against your mom. That’s not the world any of us wanted. I never wanted to be the favored parent, but especially not this way. She notices, of course, and it contributes to her sense of loss. She’s lost independence already, and losing her ability to adequately parent is an even greater blow. She defers to me often, but doesn’t understand why and much of the time, she just feels picked on herself, under siege, attacked by a united front of father and son on one hand, and beta-amyloid and tau on the other. The latter pair is the root of the problem, but the former one is both more immediate and a more personal affront.
I wish I did a better job of it. Not just being referee between the two of you, a role thrust upon me, but in all of these roles. I’m caught between you and I’m failing. The plaques and tangles have gummed up more than your mom’s brain; they’re clogging up and tangling our lives, confusing our day-to-day existence. When she puts dishes or clothes away in the wrong place, when I find myself helping her find something for the fifteenth time of the day, when I have to wait for her to explain something for which she’s lost the words (but doesn’t want help), each of these things, take my time, energy, and patience, resources I’d rather be devoted to you and to managing the basic household tasks for which I never seem to find the time.
Yes, things have been stolen from me as well. This disease has taken my time, my dream of a stable family, and any sense of an organized life. It has made me less effective at my job and has stolen from me the time I’d like to be spending on other pursuits. I’d rather be working on my unfinished novel instead of this letter and the reality is, I don’t have time for either because the house is a mess. As I write this, I have no idea who will see it. I write it as a letter to you, but in truth, you’re too young for it. I cannot burden you with these words. Maybe at some point in the future, you’ll read it and understand a bit more about this time. I certainly can’t share this with your mother. She’d take it personally; this letter would simply heap coals of guilt on her head, guilt for a disease over which she has no control, though she fights for control with every fiber of her being. She already apologizes too much, worries too much about what she can and cannot do.
Perhaps the biggest thing I’ve lost is my helpmate, my confidant. I no longer have the person who, not so long ago, I’d have depended on for reassurance, advice, and uplift. Neither of us have her, though she’s right here in this house. Just a moment ago, she turned that light on, then off again; she extinguished it for us, so that we could have this time together. It is her gift to us, bittersweet though it may be.
We need this time, you and I. Though we’ve been placed on the same side in this battle, we have to fight to stay connected. The stresses wear on us and with my diminished patience, I could see you slip away from me. I am determined not to allow that to happen. It requires work, but most importantly, it requires time. Time to just be together, be normal, reconnect, re-establish our relationship as a positive one amidst the storm of negativity, chaos, and tension.
I’m still learning to accept our situation. I have to give up on so many my dreams for you, most of which just involve a normal childhood. There’s no time to have you in soccer; your mom can no longer drive you to practice and there’s not time when I get off work. Piano lessons aren’t an option; I hate that you’ll duplicate my lack of a musical education, especially when you may well have inherited your mother’s musical talent. You want a dog of your own to care for, but the very idea of it exhausts me.
What I worry about most of all is what you’ll remember about your mother. I worry that you’ll remember the strains, the battles, and all too soon, the caregiving. But that’s not who she is. I want you to remember family story time, tickle-fests, and dancing in the rain. I want you to remember the woman, who, like yourself, lives in the moment and never fails to find the joy in the world around her and indeed, seeks it out or imagines it when it seems absent.
Your teenage years are approaching, faster than I can prepare for them. I wish I could tell you what to expect, though if it were possible, I’m not sure it would be advisable. We may have five years left as a family of three; we may have thirty. Whatever the number, your mother will gradually be less the one you know now. Another thing I learned is the saying that if you’ve met one person with Alzheimer’s, you’ve met … one person with Alzheimer’s. Each experience is unique. This disease is stealing from us hours out of each day and more importantly, years with the woman we both love. And, it is doing so in ways we can predict no better than we can prevent.
It’s an ongoing question in my mind, how much to tell you and what to hold back. You know about the Alzheimer’s, but between your age and the magnitude, you can’t really fathom it. I’m middle aged, and I can’t fathom it. But you really have no idea what’s coming, that she’ll eventually lose the long-term memories, even those of us, that she’ll eventually not recognize us, will be increasingly unable to function. I’m not sure how much to tell you; I’m just hoping that being with you along the way will validate the approach of taking each day as it comes, the perspective I’ve somehow adopted, more out of default and lack of an alternative than as a guiding philosophy. The best comparison I can come up with is teaching you to ride a bike, something we’re still working on. Sometimes, as a parent, you find yourself holding the back of the bike while the child doesn’t know it, guiding you along, while at others, you end up letting go as the child thinks you’re still holding on. I alternate between each, never knowing if it’s the right approach.
All I can really say for now is, we have a journey ahead of us. It will be long, but I can’t say how long. It will be hard, but in ways I cannot describe or plan for. There will also be joys along the way, because even if I forget, that’s one thing your mom won’t forget. The truth is, you and I are flying blind. We may crash and burn or soar high; most likely both. But whatever happens, we’re in it together. Your journey will be made with one thing remaining constant. Just like we are now, here in this recliner, my arms will be around you.
So, snuggle in little guy, rest up. We’re in for a bumpy ride.
Photo courtesy of author