Posts Tagged ‘alzheimers’

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Extended Obituary for Ed Hodson

2017.February.14
The official online obituary was shorting and cropped some text, but you can view it and a slide show here.

This photo from February 2013 features Ed (early in his illness) and the author, his caregiver.

 

Ed Hodson quietly slipped out to reunite with his beloved wife Saturday afternoon in Arlington.

 

——————–

 

Ed Hodson was the youngest boy in a family of fourteen, raised on a family farm outside Joplin, Missouri. He was good at Math, and bad at History (he never saw the point in it), and so he and his sister Flora (AKA “Fid”) would help each other out. After he graduated from Alba High School, Ed got permission from his mother to enlist in the Navy, four months before Pearl Harbor. Through World War II, Ed repaired fighter plane engines in the South Pacific: Guam and Guadalcanal.

 

Ed met his great love, Marie Mainey, a waitress, on leave in Kansas City. When Ed finished his tour, he started training for General Motors in California, and E joined him there. They were married in Kansas City in 1946, and the two were inseparable until her death on April 7th, 2006. Those last few years of her life, Ed was her caregiver around the clock.

 

Ed and E enjoyed the nightlife in Kansas City, where they were also close to E’s family in Topeka and Ed’s family outside Joplin. E made an agreement with Ed that she’d handle their money if she didn’t have to work, and Ed gladly accepted. Ed was making an impression at General Motors; although he’d been training for airplanes, they ended up putting him to work in automobile manufacturing. A few years in, Ed’s supervisor was re-assigned to Texas and when asked to pick a team to go with him, Ed was his first choice. So in 1954, it was Ed who drove the very first car off the Arlington assembly line: a 4-door Pontiac Chieftain.

 

Ed worked his way up as a friendly and effective supervisor, who revitalized teams and resolved disputes throughout the plant. He was best known for his work in Repair and Trim, though. As the plant and the city grew, Ed encouraged family and friends to come work for GM, so many members of the Hodson family came to the area because of Ed. He retired from General Motors in 1980, as Superintendent of the Trim Department.

 

It took a while for Ed and E to adjust to living away from a big town like Kansas City, but they found friends and dancing in Fort Worth, and occasionally Dallas. It was in East Fort Worth in the late ‘70s that they met Betty Lawson, who quickly became their favorite bartender. Betty was estranged from her family (not too far from Joplin), so they all kind of “adopted” each other as family right here. When Betty became a single mom in 1980, “Ed and Marie” became “Ed and E” because Jeffrey’s first three words were “Ed”, “Mom”, and “E”. The ties of chosen family became unbreakable, and extended with the arrival of Kevin, and then later with Kevin’s kids, Chelsea, Skyler, and Ace.

 

Ed and E’s home provided a sanctuary of laughter and generosity, where these kids had more toys than they knew what to do with. Ed developed a green thumb in retirement, so there was plenty of lush outdoor space for the kids to play in. And when things got tough at home, which they sometimes do, Kevin and Jeffrey, and Chelsea and Skyler and Ace, knew they could come over to 1610 University Drive and feel secure and lots of encouragement.

 

Ed is preceded in death by his wife, Marie Teresa Hodson, and 11 sisters and brothers: Othal, Twila, Juanita, Cora, George, twins Jessie and Essie, Myrtle, John (AKA “Big”), Flora, and baby Bobby (plus two nephews who grew up alongside Ed: John (AKA “Little”) and Bobby).

Ed is survived by daughter, Betty Lawson; grandsons Jeffrey and Kevin Lawson; great-grandkids, Chelsea Wyatt and Skyler and Ace Lawson; sisters Velda Murphy of Plano and Iris Dowell of Buena Park, California; numerous nieces and nephews; and a lifetime of friends.

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Storytelling as Self-Articulation

2015.September.13

I could probably wax philosophic for a thousand pages on the ways that fiction can help us understand, articulate, and interpret our realities, but this fun little example happened the other day so all you get is a sample anecdote:

My beloved and I have been watching Farscape (a fun Australian sci-fi set on the other side of the galaxy), and after my weekend off we sat down to an episode called “Through the Looking Glass”. In it, the spaceship of the main cast makes an error exceeding light speed and splits into four parallel dimensions: besides the “normal” dimension, three variations appear, tinted by colors. In the red dimension, everything is unsteady and nauseating (hindering the body); in the blue dimension, loud noise disorients (hindering concentration and communication); and in the yellow dimension, everything is inexplicably hilarious (even if it shouldn’t be).

The parallels for my caregivee became apparent when he came in (mid-episode) to tell me about all the jokes he’d pulled over the weekend, such as telling the cashier at our favorite barbeque joint that I was absent because I “got mixed up with some Arab girls and ended up in jail.” But he reassured her that he’d taken care of it and I was out now.

His red days are the days when he can’t keep his balance, his blue days are when his memory is especially confused or his aphasia especially pronounced, but last Sunday…

Sunday was a yellow day.

Farscape

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PSA: It’s Okay to Laugh

2015.May.20

[I drafted this a few weeks back, tweaked it a little, and shared it with a trusted source who thought it was even better than I did when I drafted it. I feel like it needs a lot more work than I am willing to give it, so in the spirit of Imperfectionism, I’m just going to post it as is.]

If you think about it, White Guilt is pretty damn hilarious.

From the stance of marginalized people, the notion that a visible status and some restless pushback can disrupt the individuals with power better than generations of ardent resistance must cause more than a couple of stifled giggles (in the head-shaking sense that one must laugh so as not to cry).

From the stance of people who believe in the power structures that exist, that poor people deserve to starve and people of wealth deserve to have their personal security regarded as a public matter and that no trained cop has ever, ever shot the wrong kid for the wrong reason, the idea that the people who hold that power should feel guilty is a notion worthy of derision.

From the pragmatic, those who perhaps know that systems are unequal but are just trying to get by and don’t make it a personal mission, the weight of oppression is optional and emotional, and how ever is guilt going to get the children fed and the roads paved? [snicker]

From the bleeding hearts, we vocal white liberals, White Guilt is a trap that either catches oneself (evoking nervous laughter) or gives chase unceasingly (evoking smug laughter until we fall and it inevitably catches us).

White Guilt finally caught up with me last year, when the strain of caregiving and other personal struggles forced me to pull away from activism; I was left alone to cross-reference the intersections of my white privilege (which I more or less handle sanely) and my male privilege (which I can hardly say I handle at all…) and started seeing very uncomfortable patterns in my dating and, for lack of a better term, “ally” behaviors.

The greatest laugh of White Guilt is that it laughs at you when it takes away your sense of humor.

For the thousands of privileged people on the Internet clamoring so desperately to be accepted as “one of the good ones”, the easiest gesture to make is to call out others’ bad behavior without ever looking within. Denounce the racist fraternities, but not the academic culture that overlooked them for generations. Stop following whatever privileged writer has been newly declared “problematic” without taking the time to re-examine why you loved them in the first place. Swoop in on other people’s social media, declare their privilege is showing and they should read some bell hooks, then swoop out before they ask for clarification (or specifics).

People of color have no obligation to educate white folks, and I’m “one of the good ones”, so that kind of applies to me too! 

Are we sure we’re not the subject of someone’s satire? Because it seems pretty ridiculous…

The truth is, with the right perspective, just about anything can be funny. Those of us who want to be aware of our privilege should take extra care not to laugh at the expense of those less fortunate than ourselves, but that does not mean the paradigm itself is not rife with comedic potential. It’s a matter of getting the right joke.

Personally, I’ve been at this a long time, but I still struggle at times to keep perspective. I should know by now that any time I can’t laugh at SOMETHING, I’m probably not in a healthy mindset. And I’m so used to looking at the big picture, the intersections, the gravitas of everything touching upon everything else, that I actually have to encourage myself to seek out the humor in mundane moments.

As a caregiver, there are plenty of these moments, where I only take myself and my situation seriously at my own peril.

I often find myself tweeting ludicrous scenarios from my caregiving adventures. I do so partly because I use my hashtag as an archive, so that one day I might come back and make sense of how these years reshape me. I do so partly because moments are poignant, and a moment recognized is a moment when I stood still and looked around.

I also do so to share a laugh.

A few people have told me that my social circle has likely evaporated because people don’t know how to interact or relate with me as a caregiver. For such persons, I might be tempted to say their interactions were never stellar to begin with, and my expectations were not high (I was never comfortable on pedestals — especially when my loved ones were left off — nor of casual enmity, especially by Brutuses who never bothered to declare animosity until I was already under attack).

But really, this waxing cantankerous comes more from the fact that I have been telling people all along how to interact with me, to no avail. I was an over-communicator before all this started, yet people consistently hesitate to ask even basic questions. I would hold private and public events regularly to stay connected, until attendance tapered off and I was just spinning my wheels. I posted thorough, thought-out lists of how my needs could be met best, and they got a handful of likes and no substantive results.

And I shared (and continue to share) poignant moments along the way. Because I am now an unfamiliar entity, my posts are approached with trepidation, every word taken most severely, and all humor stripped away because it might be better to be silent than to be insensitive. My family chastened me once for calling my caregivee “the old man”, even though it was a) factual, b) protected his privacy, and c) only used in humorous posts. Not long ago, I shared a slice-of-life moment that made me smile, but got two frowny-faces on Facebook. Anyone else’s roommate starts fussing over the “correct” flavor of ice cream and it’s a silly laugh to be shared; it happens in my house and I end up feeling like I’m bringing people down for having shared it.

Let me be clear: I cannot laugh at the person for whom I care. He is not weak, ridiculous, pathetic, or contemptible. He is my personal hero, and he is sick. But because of his illness, he sometimes says or does idiosyncratic things. That’s amusing.

To not laugh at funny situations (again, in good nature) would be to infantalize him.

Laughing can also represent acceptance, that however well or not things work out, we have done our best in a situation and we have no significant regrets. To not laugh at our missed opportunities is to acknowledge that we weren’t doing the best we could. That we have something for which to actually feel guilty.

I can’t really speak to when or how it’s appropriate to laugh at White Guilt (I just dashed this off in the wee hours when I should have been sleeping), but I can tell you about my life and my personal experience. I can tell you that I share moments that touch me, but not so much the ones that scare me. I announce changes in condition (for the sake of my family, who will always opt for the least interactive communication available, ever since we used to shout across our series of rather small houses for one another because stepping into another room was SUCH a chore), but only when it feels safe to do so.

Everything else, I’m at least trying to be a little funny, because humor helps me cope and sharing humor helps me not feel alone. I won’t dare laugh at something I could change, but I’d like to get to a point where I could laugh at anything I couldn’t.

So for future reference, any time you think I’m trying to be funny about my life as a caregiver, please join in the laugh. And if, some day, I return to activism and you think the same thing about something I post with political implications, try to find the humor in it (even if it’s just how ridiculous I am for trying).

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PSA: Hyper-vigilance Kinda Sucks the Life Out of You

2015.March.31

Caregiving fosters hyper-vigilance, which fosters a normal state of negativity because you’re always thinking out worst-case scenarios. It’s taken me three years to realize this. It’s devastated my once-positive perspective during years that were already hard many times over. It’s cost me friendships. It’s cost me hope. It’s cost me love. I can’t imagine how much it’s hurt the perspective of people who only (or primarily) know me online.

Now that I’m aware of it, I can work on balancing things out, but that doesn’t mean it can’t still get worse. Combine this with ambivalence about Facebook profiles on the longer side of a decade old, and most days, I can’t tell the difference between friends naturally drifting away due to life circumstances, friends who merely flake out or stop using social media, people who have written me off because they think I’m a flake (sorry, buy Maybes are the best I can manage for the vast majority of impersonal event invitations), and people who hate me.

Leap in logic? Sure. Something I can stop or reverse at this point? I doubt it. I’m doing everything I can to take care of myself, up to and including therapy and changing how I define friendship and purpose. Four months ago, I had to put an all-stop on activism because there were too many hard truths coming from the outside world to keep up with the hard truths afoot in my own home. (If you see me post something even remotely activist-y, you should know that I’m hurting myself doing it

I used to post often about what my needs would be as a caregiver so I could keep the feeling that I am a positive, accepted, and respected human being. I didn’t stop posting about those needs because I stopped needing them, I stopped posting because no one was listening. Why? I dunno (see above).

The point is I often feel forgotten, and while my pride probably needed the jolt of reality, this has more than once swung too far and too fast in the other direction. Depression, illness, and exhaustion are common in caregivers (check, check, check). So is early death (uh…).

My caregivee spent most of the last three years doing better than expected, but he is firmly in the middle stages of Alzheimer’s now. There are more appointments to keep, more decisions to make, more aberrations to track, but I still have time to twiddle my thumbs and ponder the perpetual now. Those moments have become rather empty.

I have the minimal support system I need to get things done. We have food, income, housing, stability, and back-up for when one of those things flounders. What I need are gentle reminders that I am still a human being and I am entitled to an at least occasional affirmation of my humanity.

So here’s an updated list of only five things YOU can do to support me (or another caregiver you know):

Say hi (preferably not on Facebook). I have a dozen apps, sites, or other interactions where we can chat, including text and meatspace. Most of them have become specialized for affirmation during my time as a caregiver, but Facebook is weighed down by the 500 friends and years of algorithms that predated my caregiving days (to say nothing of their admission that negative posts get more traffic, so it’s in their best interest to make our days worse).
Connect me to new friends. I don’t really get to meet new people. No coworkers, no classes, no dates or parties… If you think I should meet someone, just connect us. If you know any other caregivers (not necessarily Alzheimer’s, but especially them; not necessarily young, but especially them), connect me.
Stop telling me about Alzheimer’s breakthroughs. The next person who posts a link to an article about an Alzheimer’s breakthrough on my wall is going to get snail-mailed a copy of last week’s local Greensheet; that will do you just as much good as those articles are going to do me/us. Yes, there are exciting discoveries afoot, but they are already too late to do my caregivee any good and that makes them just one more distraction.
Face-time. Come see me! Invite me over! Does anyone just hang out any more? Special props to anyone who lives within a 20 minute drive, wants to drop by because they’re “in the neighborhood”, or is willing to accompany me on one of my numerous errands!
Share your joys with me. Little or big, I don’t care. I missed a half-dozen weddings last year, but the ones that hurt the worst were the ones I wasn’t even invited to. So send me a postcard, post a cute meme, tell me about your new favorite movie. Even if it’s something I wouldn’t appreciate in the way you do, I WOULD appreciate how much it means to you. Celebrating your humanity will help me hold onto mine.

Thank you, sincerely, just for reading this. Any small or large effort would be appreciated, especially in the weeks and months after this post has waned. Hopefully, other caregivers can use this, too, so share it with a caregiver you know and ask them to customize a list of ways you could support them, too. Remember: our society is aging fast. Some estimate that up to 1 in 3 of all Americans alive today will be a caregiver at some point in their lives. I’m just one of the first you know.

*posted without edits or links, because I’m trying to develop a stance of Imperfectionism*

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Deactivation

2014.May.31

One of my proudest accomplishments was waiting to take Physics in high school until my Senior year. My classmates in the smart-kid classes all loaded up on Math and Science as Juniors so they could have more off periods their last year of high school, but I decided I had enough on my plate. Sure enough, most of my classmates burned out while I coasted along as I always had. I recommended this plan to an upcoming Sophomore and she went on to be Valedictorian of her class (and even made a point of thanking me).

Activism and understanding have shifted much of the narrative above in my mind (for example, I’m pretty frustrated by the way smart-kid tracks marginalize “average” students academically and “honors” students socially), yet I retain my pride because of my capacity to choose an unusual path and avoid burnout. The topic has come up often for me: I scraped by on cheap food in college because I knew a job would be more than I could handle; the nonprofit for which I worked in D.C. advocated sabbaticals and self-care as a part of every activist’s strategy; I even skimped my hours early on during political campaigns because I knew I’d be working plenty of overtime by the end and getting paid the same.

If perspective is my superpower, avoiding burnout is one of its fringe benefits (like Magneto being able to “fly” by lining his boots with metal).

Becoming a caregiver has changed everything I thought I knew about myself, though. For the first time in my life, I am responsible for another human being, but unlike my child-rearing peers, I am watching a delightful human being recede into an infant. And unlike my activist friends, who have campaigns and victories and defeats and weekends and vacations (whether or not they use them), I have a crushing amount of stability. You see, when your “work” includes watching someone die very slowly, the good days are ambivalent at best. Bad days are the days where there’s something to do, something to clean, some goal to achieve; if you fuck up, if you learn something new, if you wear yourself out, you at least have somewhere to direct your angst: guilt, action, emotion. Good days have a heartache all their own because nothing happens; every day they don’t get worse is another day you have to wonder and wait and stand ready, because some day they will. Bad days may be exhausting for the body and the mind, but good days are exhausting for the spirit.

It’s hard to be an honest, earnest optimist when your life is lived amid the therapeutic fibs of Alzheimer’s, but it’s even harder when you have a lot of time and self-awareness to navel-gaze over the whole thing. It’s really rather insidious, because there’s rarely a clear turning point, never a conscious decision in the matter: “This is going to be a good spring, so I shall take up pottery and get out of the house more;” “That new neuropathy treatment is going to frustrate and exhaust us, best to minimize my diversions and focus on extra sleep.” If I’d been a little more conscious of what was to come, I totally could have accommodated the ups and downs better, but I wasn’t, and I almost always feel like I’m using my time poorly: “He’s feeling rotten and I’m not available enough because I’m dealing with a dozen outside stressors!” “He’s feeling great and I’m sitting around twiddling my existential thumbs!”

Having perspective as a superpower makes me kind of dependent on all the little things that came with that superpower; what do I become when I lose that power in the most important aspect of my life?

Apparently, this is what happens… Anxiety, stress, restlessness, frustration…

It’s starting to sound like burnout.

Except I can’t burn out.

I CAN’T.

What I can do, though, is check and recheck the other aspects of my life and shift my choices in directions I might have thought too extreme before. I have been anticipating this process all along, I just assumed it would be bad days that would bring the big changes to the fore. Last year I made the painful choice to leave a community I’d helped build, but that decision was helped along by internal strife and gut-wrenching loss. Stubborn as I am, I usually have to actually land on the “Day of Reckoning” space before I do much reckoning…

Last week, my heart was captured by the discussions blossoming around #notallmen/#yesallwomen. The more I read, the more I wanted to say something of my own, to pick up that last little bit where other sympathetic cismen seemed to trail off. I wanted to confess my male sins and start a movement encouraging other men to do the same. I drafted something eloquent and meaningful, tagged in a loved one who blogs to keep me accountable, and…

…and nothing. I had the time, I had the energy, I had the passion, but I just couldn’t get it done. The more I guilted myself to finish, the more I knew I wouldn’t. A couple of tangential conversations came up on Facebook, but I left each feeling unreasonably drained. Actually, that’s been happening a lot lately, on a lot of activist-y topics…

I just don’t know if I’ve got it in me any longer. I’ve been seeing activism as my supposed respite from caregiving, but that’s a lot of worry to welcome.

I believe in personal change AND I believe in global change, but if I have to let go of one I must let go of the will to influence others. I will unpack my privilege and live kindly by example and be available for those who come to me with questions, but the devotional part, the pro-active part, the ACTIVIST part of me may be too big to feed.

Which is not to say I won’t have it in me again; the time has simply come to remind myself I have a choice, and I will always choose caregiving over activism. He needs me and I need me, and as long as I have me, I can always come back to this when my caregiving days are over.

I asked my friends (on Facebook) whether they’d hate me if I took the month of June off from activism; I got very supportive responses, including, “if you burn out, don’t take time off, and don’t return to it, you would end up losing a lot more time in the long run,” and “the struggle will be there when you get back!”

Part of me feels guilty for even thinking about it: there goes another person of privilege dropping out when the going gets tough, leaving the people who don’t have a choice in the matter… but activism is and will always be a part of me; it’s just that who I am is kind of broken right now. Everything in my life is shrinking, but that which is too small to see is not necessarily too small to exist. Right now, this is the one thing I might be able to live without (or, more accurately, at a much smaller intensity… geez, how on Earth am I going to do that?), and I owe it to this other human being — to whom I have committed my life — to try. He wants me at my best. He deserves me at my best.

I do have dozens of friends who are working hard yet; some of these even credit me for their level of understanding or involvement, so maybe I get partial credit. I mean, hell, I have been known to say the best move for a white cisdude in activism is to shut up and let someone else talk, so maybe I should spin this as just activism 2.0…

The truth is, I don’t know. Maybe I’ll come back at the end of June with a fresh perspective on how I can balance being a caregiver and a passionate agitator. Maybe I won’t “come back” at all, just continue to live out my values, to self-examine, and to support other people doing great things in private. Probably, the answer lies somewhere in between. But I need to let it be whatever it will be, and I hope my friends, loved ones, and (dare I say?) allies will understand.

My private philosophy for personal change has for years has been, “Do what you can. When that gets easy, do a little more.” I guess there’s a corollary… “If it’s too much, do a little less.”

Go get ’em, yall. I’ll be along when I can be.

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