Tag Archives: family

Downdate

Posted on by
8

A word I just made up. An “update” includes positive and negative developments. A “downdate” is a decidedly negative update. Here goes.

Lynn’s symptoms are growing in number and worsening. And she’s darn near non-communicative.

Since the MSA diagnosis, she’s been like a jack spinning so fast on a hard tabletop that you wonder when, oh when, will it stop.

I want to ride my trike. I want to go to the Y. I want to dodge the garbage cans and go from the back yard to the front in my wheelchair. I want to stand up on my own. I want to do it myself. I want to be normal. I want to live. And now that I’ve stopped caretaking, and can exhale, I wonder, who can blame her for her fighting spirit?

Now, though, the jack slows and wobbles. No more trike. No more trips to the Y. Alison said last night she held tight to a few garden tools, but no real gardening took place. It’s like this disease broke into our house, took every single thing in it, and then, not content, broke out a sledge hammer to destroy the walls. Now, I’m afraid, it’s going to torch the exposed wood framing. It’s relentless.

Since Lynn’s move to an adult family home five weeks ago, Alison and Jeanette have been amazing. Investing tons of time and energy. Ready to catch her as the wobbling worsens.

Lots of people continue to be amazing. Ebony, for example, is a hospice volunteer who comes twice a week to help Lynn shower. The last time she didn’t know I had slipped into the bedroom that is connected to the bathroom where she was helping Lynn. Ebony was so ebullient. She kept asking Lynn if the temperature was okay and continued talking to her like she was her own mother. She was having a genuinely good time aiding Lynn, and by extension, our family. Such humanity.

And Lynn’s friends. And their flowers. And cards. And visits. As a group, they are wonderfully unbothered by her decline. Like Alison, Jeanette, and me, they need her smile and probably wonder what they’re going to do without it.

A significant change is that Lynn is coming to grips with the fact that nature is running its course. And that her time is short. Her quality of life is such that she’s more okay with that now. One can only endure so much.

As for me, I’m living a double life. Monday, I had an amazing swim in a beautiful local lake. Tuesday, five friends and I were bearing down on Tenino when a herd of 50+ cows and calves, all the exact same white color, moved in unison towards the road to seemingly spur us on. That was surreal, and when combined with our idyllic weather, and the trees starting to show out, it’s tough not being able to enjoy my favorite time of the year with my favorite person.

When I get home from the lake and the group ride, the kitchen is empty. There’s no one to ask, “How was your swim? How was your ride?” So my autumnal joy is tempered by a void. My love of fall is no match for this loss of intimacy. Unlike Lynn though, I will be okay. In time.

On Dying

Posted on by
1

Great title, Ron. What’s the opposite of clickbait?

The rollercoaster that is living with and caring for someone with Multiple Systems Atrophy careened down to the bottom of the track Tuesday late afternoon/early evening. Lynn’s body shut down. And I couldn’t understand a word she was saying. This was late into a long two-day stretch without our normal a.m. help. So I wasn’t in a good place, and Lynn, of course, was in a much worser one.

Then the 5p meds and my amazing dinner kicked in and she bounced back enough to ask, “What would you do?” And so, I told her.

“I’d probably give up. It’s hard to know for sure, but yeah, I might throw in the towel and let nature run its course. You’re way tougher than me. Which is kinda ironic isn’t it, since I often said you were too damn delicate? Yeah, in the end, you turned out to be way tougher than me. Maybe I have some Erwin Byrnes in me.”

Then I told her that a not inconsequential subset of people on the MSA listserv choose death with dignity or they voluntarily stop eating and drinking. Because they want to assert some modicum of control over the downward spiral.

In the past, after reflecting on her mom’s decision to stop eating and drinking in her final two weeks, she’s said she’d do the same someday. That time is not now, but her will to live isn’t what it appears on the surface when she flashes her golden smile. Her will to live is gradually flagging. Hence her question, “What would you do?”

Last night J asked her if she enjoyed visiting with her college roommates online and she surprised J by saying, “Not really.” Having eavesdropped on the conversation, I intuitively knew why. Because she will not be giving a toast at either of her daughters’ weddings. And she will not be traveling anywhere. The roommate’s normal catching up was a painful reminder of things lost and how her world keeps getting smaller and smaller. Of course, they didn’t intend for that, and they didn’t realize it because of . . . the golden smile.

Lynn’s question, “What would you do?” prompted me to think even more deeply about her daily life. Yes, I am a complete mess right now, but I’m going to get better. And I’m going to renew my passport next year, and I’m going to catch up with you hopefully, and add lots of events to my calendar that I’ll look forward to. I am bullish on the future.

What does Lynn have to look forward to? Or maybe, more immediately, what brings her joy? Me, especially when I’m okay enough to joke around. The labradude appearing suddenly under the wheelchair. Picking dead leaves off the tomato plants. SchittsCreek with the hijas. Saturday lunch with the gfriends. Always, Saturday lunch.

For me, I don’t know if that would be enough. If I was her, I’d feel almost entirely like a spectator of others’ lives, not an active participant. I’m not sure I’d feel enough purpose to keep fighting through all of the adversity. To be so damn dependent upon everyone for everything. Again, she’s starting to wonder if it’s enough too.

Whether to passively live as long as possible or more actively speed up the dying process a little or a lot is a deeply personal question upon which reasonable people disagree.

One thing I know for sure however, is that everyone who is dying slowly, should get to decide for themselves what to do, if anything, without any outside pressure. That’s why I keep telling Lynn my probable throwing in of the towel doesn’t matter. That she gets to decide how to live out her ninth inning. Which is one important factor in the move to an adult family home. She will be cared for by pros, not a shattered, amateur, impostor of a caregiver.

In saying I’d prob let nature run its course, I also shared my way of thinking about death which took shape following my dad’s sudden death when I was 33. At first, I was mad at the world that I’d never get to find out where our newly evolving friendship was headed. That he didn’t get to hold Jeanette. That so much promise was cut unfairly short. Then, somehow, I consciously pivoted to celebrating our nascent friendship and all the positive memories I had of him growing up.  

My intentional approach is “choose to celebrate” all the positive memories instead of being eternally upset that the movie cut off before the ideal end.

I told Lynn not everyone lives 64 years. And not many people have as fulfilling a 40 years (38 married) as we’ve enjoyed. I told her that, eventually, I will be okay, largely because of all the positive memories we made. She seemed receptive to my quirky thinking, but I can’t be entirely sure. Equally possible, she thought, “How did I get stuck with a bonafide whacko?”

I just don’t think we can do both simultaneously, we have to choose one or the other. I choose to celebrate. Is it a panacea for softening the blow of loss? Does it speed up the grieving process? No and probably not. Is it better than the alternative? Of being mad at the world? Of staying mad at it? Most definitely.

The Ultimate Litmus Test

Posted on by
1

At the end of life, how does one know whether they’ve lived a good life or not? More personally, how will you know if you have? How will I?

Many of us live as if professional reputation, material wealth, and social status are the key ingredients, but watching The Good Wife get closer to the end provides an altogether different litmus test.

Which is this. Have you been a good enough friend, to enough people, long enough, that they’re there for you at the end? Or has a certain self-centeredness and peripatetic life left you mostly alone?

You’ll only know which of these is the case if you die slowly. Some of us will go quickly like a friend of mine who fell over dead on his bike in Italy last summer. Although he didn’t have time for the “close friend” litmus test, his memorial service provided positive clues to a life well lived.

Based on the “close friend” test, Lynn has lived an exceptional life. Unfortunately though, she’s unable to take solace in that knowledge. Because like many of us, she’s incredibly hard on herself.  My unprovable hypothesis is that the built-in feeling of inadequacy began at birth with Lynn wondering, “Why didn’t my mom want me?” Almost certainly, it didn’t help when 45 years later she contacted her birth mom only to learn she still didn’t want any kind of relationship.

Consider the last 48 hours. Yesterday, Lynn participated in a zoom call with her four dear college roommates. “Participated” meaning listened intently and smiled throughout. Today, an hour before Pastor Carol was coming by with communion, Susan texted to see if she could pop in. I said she could join Lynn and Carol, Carol happens to be Susan’s pastor, and the three of them visited for over an hour. I could go on and on. Lynn’s support network has blown my mind. She is being loved and supported by so many people none of whom are the least bit phased by her worsening symptoms like her loss of voice.

Some bring art, some bring pictures, a lot bring food. In the end, they just want to be next to her. And to see her smile. When we’re without her smile there is going to be a painful void in a lot of people’s lives, not just A’s, J’s, and mine.

I intend on honoring Lynn’s eventual legacy by prioritizing friendships even more.

Paragraph to Ponder

Posted on by
Reply

Susan Rothchild in The New York Times:

“My son, Chauncey, died a few years ago of a fentanyl overdose. He was a brilliant, eccentric autodidact, an excellent farmer and chef, but he chose to work as a carpenter and plumber. He was not good at either job. Yet, when he offered to build my new bathroom, I said yes. Now every time I take a shower and see the dribbles of grout on the wall, stand on the still-unattached drain plate or get drenched using the hand nozzle with a mind of its own, I think of him. I will never get them fixed.”

Two Worlds

Posted on by
3

Public and private. All of us behave a little or a lot differently whether we’re in public or not. In extreme cases, people live “double lives”.

The dichotomy between Lynn’s public life, by which I mean when friends and family visit, and private one, where I’m the only person around, is so glaring that it got me thinking.

Specifically, I’ve been pondering why she’s not just okay when friends and family are around, but especially smiley (and today, extremely giggly) and physically better than normal. There’s a wonderful lightness. I guess it makes sense learning what we’re learning about the importance of close interpersonal relationships to our overall health and well-being.

But man, the whiplash that comes when friends and family leave is intense. And disorienting.

When home alone she pops boosters between timed meds and her body is off and on, and when on, she’s bored, and she struggles with any sense of purpose. There’s a heaviness.

Why am I telling you this? Not sure. Maybe to help you mentally prep for this phenomenon if you’re ever a primary care giver. Or maybe I’m letting you in hoping for some sort of connection.

Last night, I had an epiphany. A tough one that I was hesitant to share with Lynn because I expected a negative/defensive reaction.

I told her I had an observation I wanted to share with her. “You have a restless spirit.” There, I said it. Fortunately, I was wrong, because she didn’t argue the point. She listened carefully as I told her I missed her, that it felt like all of her time and attention was taken fighting her Multiple Systems Atrophy. That there was no time or attention left for me.

That I felt more like an employee than best friend.

Most people confined to a wheelchair and unable to do hardly anything independently watch a lot of tv and read. Since Schitt’s Creek ended, Lynn doesn’t watch tv and her reading glasses, despite repeated trips to the optometrist, aren’t working well enough for her to read much.

Thus, when alone, if she’s feeling okay, she’s in constant motion searching for something to do. Anything to do. Or she’s laid out on the couch waiting for her meds to kick in. The only time she’s not on the move is when her body completely quits or she’s asleep.

Our convo, mostly about how dying is scary and spiritual malaise, deepened. She cried and said she didn’t know “I loved her that much”. I took in what I think was her deeper message, “I didn’t know I’m that lovable.” I told her lots and lots of people love her.

I told her I was having a hard time dealing with her restlessness and with her constant MSA fight. That caring for her took all my energy, that there was no leftover energy to just hang. And that it would be really sad to spend our final months or years together not really together.

Case in point. Saturday and Sunday nights I throw dinner together for the fam and then sit at the kitchen island with my own dinner while one or both daughters join their mom at the dining room table. Hell, during the week I do it too, leaving Lynn to eat by herself. Yeah, you’re right, I am a lowlife.

While I am a lowlife, I probably deserve a few points for being vulnerable and risking the convo. Sadly, in part, I risked it because soon we won’t be able to have back-and-forth conversations of that sort.

But not being especially centered myself these days, it’s really tough to take on her anxiety about dying, her exasperation at MSA’s relentless progression, and her general unease and utter restlessness. Especially given the cost that restlessness is taking on our friendship. For now.

Postscript: We ate dinner together. Afterwards, there was more slow dancing in the kitchen. The roller coaster keeps rolling.

Paragraph to Ponder

Posted on by
3

Via LOliver by way of JByrnes:

“There is so much to tend to, hold, be with, feel. May you find so much gentleness for your own process. May you let your humanity unfurl, over and over again. May the grief and hurt wrapped up in facing the world be held by your own willingness to look. May love soften the hard edges. May light soothe the dark places. May you return to your own heart’s knowing and trust what it whispers to you. May you let yourself do all of this so imperfectly, that imperfection a reminder that you are a human being, figuring it all out for the first time. I’m with you.”

Early evenings, like a lot of the time that I care for Lynn, I’m on the move. Making dinner, getting her fed, eating myself, doing dishes, cleaning the counters, taking out the trash, vacuuming the hardwood floor.

Activity blunts the grief. But I pressed pause Monday evening and it rushed in.

I stopped cleaning to dance. In the reflection of the oven, I saw the real dancer watching me. When I try dancing, she just smiles.

And now, the dancer pushes her wheelchair away from the table so that she can move toward the pretend dancer.

“You want to dance, don’t you?” Bigger smile. I expedite things by wheeling her into the kitchen. Where I help her up and embrace her. We slow dance like first-time junior highers slowly swaying back and forth.

But dammit, it’s The National singing “I Need My Girl”.

The refrain rips through. “I need my girl. I need my girl. I need my girl.”

My girl has no clue I’m crying.

May love soften the hard edges. May light soothe the dark places.

Sorry

Posted on by
2

Owe the Slo-mo Turtle* an apology. Of sorts. One day last week I was running around baby Cap Lake when I had an inconvenient epiphany. Of sorts.

After pulling the plug on the run, I did what I almost never do. I pressed pause and sat on a bench by the lake to gather enough energy to scale the 4th Street bridges. And I reflected on all the things I do every day to extend my life, like run, lift weights, and eat vegetables. I don’t do those to consciously extend my life as much as I do to improve the quality of however much time is left.

But still, it’s hypocritical for me to be critical of the SmT for doing everything in her power to beat back MSA’s progression. Yes, it does make it harder to care for her, but I’d have the same inclinations if I was in her shell.

Because there’s no way to control for all the variables, and there’s no counterfactual, I don’t know whether her efforts are having any real effect. I see them more as grasping at some semblance of normality.

Today the SmT fell asleep while eating lunch. Afterwards, Hospice Audrey, a very nice PLU grad, came for a visit. We talked about sleep among other things. The SmT is bothered by sleeping way more than normal. Audrey encouraged her to listen to her body. As I repeatedly do.

She’s not good at that. She’s choosing to crawl into the ring with twenty-something Mike Tyson.

All of us are trying to delay the finale. Aren’t we? All of us fight inevitable decline in some combo of small subtle ways and larger more dramatic ones. Don’t we?

Sorry SmT, upon further thought, we are more alike than different.

*Another nickname for the GalPal inspired by her morning routine.

Trying To Keep It Real

Posted on by
1

Newish ritual. When Abigail comes at 8p during the week, I take advantage of the evening light and walk towards the co-op and then down the Garfield Nature Trail, popping out on West Bay and up West Bay back to basecamp. A serene 2k. All while whittling down the podcast queue. Since starting this ritual my sleep score has risen a bit. Cowinkydink?

The last “evening walk” pod was an interview with a male family therapist who explained men don’t learn to be vulnerable. Dude, not an original insight, but one that trigged one in me. While listening to him it dawned on me that The Good Wife wasn’t being vulnerable with me about her worsening condition and finite time. At all. And that, as a result, I wasn’t feeling very connected to her. Just the guy who helps her in and out of bed and the wheelchair. The bloke who cooks, cleans, and keeps her calendar.

And so I told her that, and said, “What gives?” And she deflected, saying I wasn’t being vulnerable, which was humorous because I had just defied my gender and communicated a heartfelt feeling. And I told her that too. And she was silent for awhile. And then.

She talked about my first marathon back-in-the-day which went by our street at mile 21 and how I had dropped out and didn’t even make it to there. And how I felt so bad for failing A and J. That it was a perfect opportunity to model toughness and I blew it. And how my beating myself up stuck with her. And she said I always praised her for any toughness she showed. And that if she’s tough now maybe she’ll slow down the disease’s inevitable progression.

Ah shit. Any chance of rewinding the tape? Of a do-over?

I told her I didn’t think toughness would slow down the atrophy, but that it most certainly would make it more difficult for us to connect.

Then she went deeper. Talked about being afraid of dying. About questioning lifelong religious assumptions. About specific anxieties tied to what will happen to her body upon dying.

Which allowed me to return to the old familiar fold of closest confidant and best friend.

I thanked her for her honesty and encouraged her to think about dying as a natural process that happens to her beloved plants, animals, all aspects of nature. To think of it as falling asleep, but not having to wake up.

I said it would be unbearably sad alone, but that she’ll be surrounded by people who love her dearly. People who are much better off having known her.

Right now, I’m the oldest and wisest I’ve ever been, so I don’t expect any of those words to ameliorate her end-of-life anxieties and fears.

But maybe, hopefully, a little.

Why Not?

Posted on by
3

Inner peace is elusive the more we try to control others. True contentedness results from relinquishing control over other people’s thoughts and behaviors.

That’s what I’m in the process of learning. Am I half way? Who the hell knows. All I know is I will never arrive at the Total Acceptance train station.

When Lynn was diagnosed with Multiple Systems Atrophy and the symptoms started taking over our lives, I had unusual clarity about what I wanted to provide her in whatever time was left. I said to her, “I want this final chapter of your life to be as calm and comfortable as possible.”

As it has turned out, what I wanted was totally irrelevant. Her thought process was completely different, saying through her actions, “I want to ignore this diabolical disease to the best of my ability and maintain as much normalcy for as long as possible.”

Which makes caring for her so much more difficult. She’s always been uber-considerate and kind to a fault. Now though, her preternatural consideration is getting squelched by widespread atrophy. The lack of dopamine in her brain is wreaking havoc on her body and mind. I have to remind myself she’s not making a difficult situation more difficult on purpose. It’s brain chemistry.

A few examples. Six months ago or so, after dinner, I was able to say to her, “I’m going upstairs to read in the bath. I’ll be back down in one hour. Sit tight until then.” One fall night while I was decompressing in hot water, the bathroom door slowly opened. “What the hell!” No one else was home. Lynn entered on all fours. She had wheeled herself to the base of the stairs, gotten out of her wheelchair, and crawled up the stairs and across the t.v. room into the bathroom. Because she “wanted to see what the upstairs looked like now”. It wasn’t pretty getting her back downstairs.

A couple of nights ago, she appeared in my peripheral vision as I was watching basketball in the office. “WHAT are you doing?!” “Crawling.” “Why?!” “Why not?”

“Why not” is her philosophy.

Yes, you’re right, her stubborn resistance to the disease’s progression is better than giving up on life, but man oh man, I wish I could get her to accept the ways her body is failing her. At least a little bit.

But I can’t. And the more I accept that she gets to decide how to live out her final chapter, the better for both of us.

Who are you trying to control? How? When will you throw in the towel? The sooner, the better.

 

It’s My Parents’ Fault

Posted on by
3

Suffice to say, my personal life has gotten significantly more difficult of late. Obviously, this isn’t the time or place for any details. Just know, as your humble blogger, I am “compartmentalizing” these days.

The GalPal wants me to find a therapist to help make things less difficult. I know lots of people who are benefitting from therapy, and intellectually I am definitely pro-therapy, but when push comes to shove, I am Resistant to seek the help of a mental health counselor myself.

Not only am I pro-therapy, I believe our well-being depends largely on the quality of our closest interpersonal relationships, and those relationships depend largely on our willingness to be vulnerable about our inner lives.

The gender stereotype that males think and talk almost exclusively about tangible objects—whether news, weather, or sports, okay maybe cars too—doesn’t apply to me. I’m always thinking about deeper things than just how bad UCLA men’s basketball is this year.* What to do with the nearly constant deeper inner dialogue, that is the question.

Two imperfect answers spring to mind. The first was modeled by a friend a week ago when he asked if we could talk. He suggested a bike ride, and despite the frigid temps, of course I was in. Looping FishTrap Loop shoulder to shoulder, I initiated, “So, what’s up?” “It’s a long story,” he started, but really it wasn’t. It was a very good talk/ride and I’d like to think he felt better afterwards.

What’s imperfect about that? With occasional exceptions like the one just described, my closest friends, being of the male persuasion, aren’t as adept as women at talking about their feelings. As a result, it’s rare for a male friend to genuinely ask, “So, what’s up?” Could I take more initiative with my friends in digging deeper into “real” life? Fo sho.

In theory, writing could be a helpful outlet too. That is, if I could figure out the endlessly convoluted privacy concerns of those nearest and dearest to me. Which I can’t. And before you suggest it, journaling ain’t the answer, because that’s just a more visible form of the inner dialogue.

So, given those limitations, why not just “do” therapy? Asked differently, what the hell is wrong with me, that I’m so resistant to “professional” help?

I’ve been mulling that around and around.

What I’ve concluded is that the Good Wife doesn’t fully appreciate just how much I am a product of my parents’ “too extreme for their own good” intense independence. Both my mom and my dad grew up without much, during the Depression, in eastern Montana. When my dad died, his obituary was in the New York Times. Individually and together, they developed resilient, “grin and bare it” approaches to life that worked for them.

Mostly. Better for my dad than my mom who would have benefitted greatly from therapy after my dad’s death, from which she never really recovered.

Again though, that knowledge of how helpful therapy can be is overridden by my parents’ modeling which was rooted in the brutal conditions of eastern Montana in the 1930’s. Suffering was synonymous with living. You just endure it, in whatever form it takes.

Asking me to just dial up a therapist feels like asking me to break from my past and my people, to defy my DNA. Despite all the decades, I am still of eastern Montana, still of Don Byrnes, still of Carol Byrnes, still of believing that I must grin and bare it mostly alone.

For better, or more likely, for worse.

*thank goodness for the women