Author's Note: I struggled with the decision to post this. I always want to be real, but I also don't want to hurt anyone. I love my parents and everything they've done for me, especially in the last five years, but my reality hasn't been easy. I hope you can relate to, or, at least, appreciate my thoughts.
I moved in with my parents in 2019. ALS. I kept falling and smacking my head. I got scared. I couldn’t live alone anymore.
Because so many 20- and 30-somethings have had to throw in the towel and move back home in the face of (outrageous, predatory) rising rents (among other reasons), NPR’s Life Kit thought a “How To” might be helpful. They cleverly titled their story “A Survival Guide to Living with Your Parents (as an Adult)”. I gave it a listen because, under much different circumstances, I live with two boomers. Though I knew it was almost laughable to compare my circumstances to the “normies” in the story, I thought I’d give you my perspective.
The piece included individual interviews and was broken into 5 sections. I’ve organized my thoughts accordingly.
1. Do not compare yourself to others. Living at home is humbling; swallow your pride.
Right off the bat, we’re in the deep end. The piece talks not only about resisting peer comparisons, but also your own expectations. As in, this isn’t where you thought you’d be at this age? Try not to dwell on it. Shaming yourself is only going to add to your anguish.
I think I’m basically past these thoughts at this point, but they have definitely made themselves known many times. I wrote about aspects of it in a section of my memoir titled “Money and Jealousy”. In my case, as time has passed and the distance between myself and my former peers has grown, it almost, somehow, gets easier. It gets more ridiculous; there is no comparing my life (all aspects, of course, not only living with my parents) to those with families and careers and adult responsibilities. To that last one, I have almost none.
As for the ego hit, it doesn’t really apply. It does, in some manner, but not in the same way. I’m not giving myself pep talks, like, “you’ll get through this and be better than ever”. Actually, I do do that, but I’m fully aware that it’s more of a fantasy. Unlike the normies and their shaky self-talk excuses, an ALS diagnosis is an objective, rock-solid scapegoat. So, my ego is (mostly) safe from this particular attack.
2. Set healthy boundaries and establish a routine. Keep your routines and activities. Get out every day. Work from the office rather than home.
Even bigger, and more practical. There’s so much to this.
The NPR piece only referred to the (adult) child’s routine, but those of the parents are also important. When I moved in, my dad was working full-time and Mom was home taking care of the dog, the cat, the house, and now, me. We ate a lot of dinners together, at the kitchen island, almost never the dining room table. I ate most of my meals there, in the counter-height chair on the right, beside my mother, when she was sitting and not cooking or cleaning up. There was a third stool (though really, only room for two), but Dad almost never used it. Despite a long workday and several beers, he ate his meals standing up.
As with any child moving back home, I was in their space and, in my case, because of my physical dependency, added to their routines. While we didn’t eat dinner together every night, it was the same story whenever we did. I was in their world. His world.
Each time we sat down to dinner, Mom and I would sit through the same performance: Venting about work. Now, I’m happy to lend an ear to a friend in need, but I quickly realized that there was never anything new. And, unless you were voicing simple agreement, fanning the flames of another angry rant (which Mom would, dutifully, sometimes do), input was not appreciated.
For me, eating as quickly as possible (so, much slower than them) in silence, waiting for the storm to pass, it became unbearable. It was the same criticisms and put-downs, the same self-aggrandizing and martyrdom. It’s not that some of it wasn’t valid, some, but these were unresolvable (by him) problems, “above [his] pay grade,” an excuse he was seemingly forced to belittle.
It felt like he was repeatedly choosing to bang his head against the wall. I felt the same way and, each day, found myself watching the clock, full of dread as dinnertime approached. One day I began to ask to eat at my desk. Gradually, this became the norm.
I had to create some kind of control for myself, set boundaries I could live with in this and other areas. Several years have passed since this experiment began and, for the most part, I think everyone knows their role. I have a general routine to my day and week and communicate requests or changes clearly and ahead of time. But things are far from easy.
Dad retired from full-time work a few years ago and has struggled to fill his time. Several part-time jobs have come and gone and he’s ended up back in his former role during the summer season. It’s November 13th as I write this: all of the outdoor fall maintenance has long been done; cooking and running errands aren’t enough to fill his time.
I mention this because, outside of a few weekly outings with Mom, I’m usually home. I got bundled up today (Mom bundled me up; it was 34 degrees, but sunny and relatively calm) and got down the road in my chair. “Get out every day” becomes more difficult this time of year and we all need time away from each other.
3. Find a creative way to contribute to the household. Contribute financially. Perform household tasks. Contributing will help your parents feel respected and appreciated and prevent resentment.
This one is difficult. With some working, disability, and a trickle of book sales income, and minimal expenses, I do contribute financially. Money doesn’t have a whole lot of meaning to me so while I’ve always been more saver than spender and I enjoy seeing my savings and investments grow—like a game, it feels good to win—I don’t stress over it. The way I see it, even if my savings were cut in half, it wouldn’t have much impact on my life.
Other contributions are more limited. I’d love to make my parents a meal, stack the firewood, or plant and tend to a vegetable garden, but those types of things are beyond my physical capabilities. I can (and do), however, do their taxes, manage their investments, and provide on-site IT support and general technology education when needed. Instead of expecting my mom to jump in and take care of administrative tasks (as she’s conditioned to do), I can take them off her plate and out of her mind by doing them myself.
More generally, I try to do everything of which I am capable. Though there are some gray areas where I do routinely ask for things that I could, strictly speaking, accomplish myself. I can take my button-down shirt off (as long as it’s unbuttoned), but it’s so much easier for my mom; I can brush my own teeth, but (as evidenced by my dental cleanings) I’m not as thorough as I could be, so I ask her to tag in every other day or so; and I can pull back the sheets to get into bed, but I’m tired before bed and don’t want to. It might be more of a desire to maintain whatever freedom and autonomy I can—and, like a lot of men, I’ve been trained not to ask for things—but I also want to be as considerate and respectful as possible.
4. If you're dating, keep doing so. Find ways to maintain your relationship despite moving home.
I wasn’t seeing anyone when I moved in. I hadn’t, in fact, made the slightest effort to meet anyone since my engagement blew up almost five years before. Along with so many things, stuck in a years-long malaise, I’d left that part of my life in the past.
But unlike all of the other losses which had been forced upon me—most significantly, giving up my driver’s license and life in my own home—not dating was, at least in some way, a choice. It took a long time and a lot of prodding from a particularly persistent friend, but eventually I began to hear her: why not try?
Residing under the same roof as my parents, for someone attempting to find a romantic partner while living with ALS, is a pretty minor factor. Not driving is bigger. Using a wheelchair and accompanying minivan, as well as not being able to traverse even a single step (without a workaround) is bigger. Being labeled with a progressive, terminal disease is, of course, the biggest.
I had to get comfortable with the results of those limitations. And hope they wouldn’t be enough to scare every potential date away. They weren’t. There are some pretty amazing women out there (though lately, I’m not sure where they went.)
Imagine this: Every date meets your mom before you; picks you up after driving at least a half hour (two and a half in one case, no joke); and is given wheelchair tie-down and general care instructions by the kindly woman you met at the door. Fun.
A couple actually met me out in the world, but that wasn’t much better. Living with my parents, the common limitation I can identify with is simply not having your own space. Of course, my situation has been much more difficult because not only is my house (somewhat) off-limits, theirs very likely is as well. Very few people live a life without stairs.
5. Don't be afraid of conflict and seek professional help if things get too emotional. Conflict is inevitable when you're an adult living with other adults.
I’ve covered a bit of this in Section 2, but there’s (potentially) so much more. Listening to this section of the NPR piece, I had to pause and rewind several times. Typing notes as I do—with mouse and on-screen keyboard—I couldn’t keep up. I wrote the following:
Controlling parents treating you like you're still a child. Their house, their rules; no room for you. Extreme rigidity. Constant judgment (not of me; of everything.) Don't know how to be a good roommate. Involuntary eavesdropping. Is conflict resolution possible? Using an outside voice to work through conflicts. One subject realized that to continue to have a relationship with her mother, she had to move through this phase and get out of her home.
That’s a lot. So much that I decided to leave it as is and present it as such. I may have overstated some of it. Maybe.
There has been conflict. Shouting matches, storming off, long follow up emails and rambling responses. And my poor mother, driven to tears, caught in between. No resolutions have been reached besides physical separation.
I would love, LOVE to get a third party involved with the hope of actually being heard. And maybe even understood. Avoidance is no way to live.
Control and inflexibility: Maybe inflexibility inevitably increases with age. I think young people learn a lot of lessons from the roommate years of their lives. Hopefully, anyway. How to communicate; how to share space; how to get along. I lived with (counting in my head) fifteen different people from age 18 to 30, and while there were some immaturity-and-lack-of-communication-based problems, there was very little conflict overall. Most people are not that hard to get along with on a limited basis.
My parents never had that. Dad had a roommate or two in college, and obviously a lot of bosses and colleagues over the years, but mostly they’ve learned to live with each other. And that dynamic is pretty locked-in as they approach their seventies.
I guess it comes down to this: Is it my house (too), or am I just living in theirs’? It’s not my house. That’s it. It’s very simple. I have two rooms. The rest is their domain.
Could I assert myself more? Maybe. It would be nice to share music on the living room speakers, a meal of my choosing, or all watch a movie together, but, for the most part, they aren’t interested in the things that I’d choose. It’s seemingly impossible for them not to mock and put down anything unfamiliar and “weird”. And so, I’ve mostly stopped trying. I’m supposed to like the things that you like, but you won’t even try the things that I enjoy. No wonder I feel alone.
I’ve changed a lot in the years since my ALS diagnosis. I’ve tried to adapt and grow in this life. I’d like to believe that some of it was inevitable, the usual maturation that comes with more years. It’s impossible to know just how much; who would I be if not for all of these experiences?
In the simplest terms, I’ve become a very low anxiety person. It’s possible that what I see as calm is actually numbness on a level of disorder. Either way, one of the results of all this sitting—unable to utilize physical activity as distraction—has been to embrace more of a Zen existence.
My parents have not gone through this change. In fact, my largest and most ever-present source of discomfort is the result of involuntary eavesdropping. I try to avoid it, escaping into headphones for long periods, but I can’t turn my ears off entirely. Instead, I have to listen to each of them judge everything under the sun. Giving opinions—and, let’s be honest, mostly negative ones—seems to be the only conversation they have. An item in the local paper or Front Porch Forum, from any proposed development or government action to a neighbor requesting a service or, God forbid, to borrow a tool; the price of butter (and houses and taxes and everything else); the level of customer service provided by a convenience store clerk; the quality of a meal, prepared or purchased; the speed with which a phone call or email is returned.
Each of these judgments is then used to draw broad conclusions about the state of the world. It’s exhausting even to write about. As long as I’m at it, here’s some advice for the humans: if you’re the only one laughing at your hilarious joke, it wasn’t funny.
As a bit of an afterthought, at the close of the program, the host mentioned a positive aspect of cohabitation: an opportunity to get to know your parents in adulthood. Interesting. I have had a lot of conversations with my mom, though she rarely brings up anything with emotional depth. So much so that I’m taken aback when, with a seemingly identical inflection as casual conversation, she’ll relay something dark and painful that had been locked away for years. I try to encourage more sharing, with me, or a therapist, or anyone, but I’m not sure how much that happens.
The implication is that getting to know your parents in adulthood is all positive when, of course, it’s not. Obviously. See above for examples.
There’s one area, in particular, in the NPR story that doesn’t apply to me. Those cohabitating with their parents are advised to have an exit plan. My exit plan, while thoroughly considered and economically feasible, exists only in fantasy.
I've always felt I could do any job (or more broadly, anything) as long as I knew it wasn't forever. Always, in this case, is a relative term. It occurred to me in college, working as a banquet server at the Sheraton Hotel in Burlington, that there was a big difference between the part-timers like me and my friends, and those with nothing else on the horizon. One of our coworkers, in a moment of bluntness after referring to herself as a “lifer” said, “I’m a high school dropout with a kid…” Maybe that’s when the great divide became apparent; I hadn’t thought past next week.
An exit plan, a realistic one, makes all the difference. The mindset of working toward something is so powerful. Tracking progress as you move toward your goal. Without a brighter future to imagine, a difficult time can become soul-crushing, a dark shadow you can never escape. Sometimes, when I can’t seem to avoid those thoughts, be present, and live in the now, I can get stuck in that shadow.
There are also a lot of aspects of living with your parents that the piece didn’t address. A big one is location. Perhaps the assumption is that if you’ve decided to move back in with your parents, their location is convenient for you. While I understand that this was a 21-minute audio piece and not a comprehensive study, location seems like an important factor to leave out.
Location is everything. A better one—closer to work, the people, and places that are important to you—can make life easier and more pleasurable. A poor location—one you wouldn’t choose for yourself, far from the things that are necessary or important in your life—can add greatly to your stress and misery. In the case of living with your parents, a more convenient location can make it easier to spend more time out of the house, giving you and your parents what is oh, so important: more space.
Another is the physical characteristics of the home you now share. Do you have your own space? Are your parents going to feel you’ve intruded on their lives? Is there any privacy? For you and your parents, these things could be the difference between a harmonious cohabitation and, worst case, murder.
My parents moved from the airport-adjacent suburban home of my childhood in 2012. Eager for more of a country setting, they bought a few acres at the end of a private drive off a dirt road south of a small town. The house they had built is bordered on two sides by preserved land. It’s a peaceful setting (except for the lawnmowers, leaf blowers, chainsaws and gunshots in the woods.)
For a wheelchair user who doesn’t drive, it’s less than ideal. Aside from all of the reasons that this type of lifestyle doesn’t align with my values (in short, it requires a tremendous amount of resources per person that I find, at the very least, wasteful, and given the state of the planet, probably immoral), it’s been isolating, for me.
It’s more than a mile to pavement, a couple more to our small town, and at least 25 minutes to any of the other, larger destinations we frequent. A minor inconvenience to most, it’s doubled when drop-off and pick-up are required. (This is also additional caretaking time, an additional need.) It also, of course, makes people less likely to visit.
And while I enjoy my “walks” down past the pig barn and farm fields, I’m seasonally stuck in the house by the mud, the rain, and mostly, the snow. For months at a time, a drive is required if I want any fresh air beyond the deck. As you might imagine, at those times, especially, I don’t get out as much as I’d like.
The home the three of us share (along with two cats) is larger than where I grew up, but its open concept and double-thick walls make it seem smaller. It’s very quiet and, for example, as I lay in bed at the far western edge, I can make out every word of my parents’ conversation in the kitchen all the way to the east. (At the suggestion of my new therapist, I’ve started to use a sleep sounds app and portable speaker during naps. It’s been very helpful.) Except for the basement (off-limits), garage (Dad’s space), and screened-in back porch (seasonally mine for reading and some meals), there’s little privacy to be had. And now that Dad’s summer job has ended, we’re all in the house more often than not.
I’ve tried to find ways to make things easier. I know what I need—more time out of the house, alone and around other people, to summarize—but it’s not always easy or possible to get. Take today, for example: It’s the day after Thanksgiving, cloudy, and in the 30s. The grass pokes through the thin layer of snow that fell overnight. Mom’s doing laundry and just located and laminated (with scotch tape) my new Medigap insurance card while I attempted (and failed; I think I have to wait until January 1) to set up an EFT to pay my new prescription plan. I’ve checked up on my fantasy football team, the stock market, read an email from my aunt, and discovered that woman I recently matched with on Bumble (a miracle, in itself)—whose profile contains only one photo—was happy to send a few selfies. Dad has turkey stock going in the instant pot and was reading his latest mystery novel on the couch—always laying on his back with his feet up—but now they’re both in the basement presumably looking at something on his Mac.
What are my options for the day? What are their plans? I often ask Mom after breakfast, but usually she can only speak for herself and guess at the whims of her husband. I can’t go down the road in my chair; it would end up covered in mud and could slide into a ditch or get stuck. I spent a few hours at the library last Friday—and plan to continue regular visits; it was nice—but it’s closed today. I could log in to work, but don’t have anything that needs to be done, and it feels like a holiday. I could go to the table in my room—away from my desk, where I spend far too much time—and read my latest library book, ‘Tis, the sequel memoir to Angela’s Ashes, or listen to Matthew Perry tell me more about dating Julia Roberts. Or, I could try to finish my latest writing project. It’s almost time for a lunch break.
With all of this, for them and for me, the crux is a loss of control. For them, a seemingly intolerable amount; for me, at times, to an actual, crushingly unbearable level. I told my new therapist about my desire to have more structure in my daily life. It’s helpful to know what’s coming, to have some sense of certainty. And I need things to interrupt the monotony. I need to get some things on the schedule. A vacation—an extended period out of the house—would be great. A date or some semblance of new relationship would be better. Having said that, I just got a text reminding me that I’d agreed to go to a college hockey game tomorrow. Hallelujah.
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