Category Archives: Family

What Now?

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My best friend took her last breath Monday afternoon surrounded by Alison, Jeanette, and me. It was peaceful and we’re relieved she’s no longer suffering. However, even though we had a long time to prepare for this, we don’t know how we’ll pick up the pieces seeing that she’s left a Grand Canyon-like hole in our family.

In the middle of the five last hours we spent bedside, Ebony, a Certified Nurse Assistant, who helped Lynn shower twice a week, joined us around the bed and held her hand. She only met Lynn three months ago, but she loved her like Abigail, Olga, FuFu, and all her caregivers did. Ebony talked about how loving and special she was and all I could think is how Lynn connected with all these women while at her absolute lowest point.

There’s no humanly explanation for that.

Blessed be the fact that MSA never broke her spirit. A few days ago, when a former caregiver came to visit, it didn’t matter that Lynn had stopped eating and drinking, she lit up, and flashed the smile that warmed people’s hearts.

A friend forwarded this message today from Lynn’s former student Miriam.

Her last of a lifetime of selfless acts was donating her brain to science. If you want to honor her memory please consider a gift to the Brain Support Network.

A favorite poem of hers.

The Winter Of Grief

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What the hell am I going to do when I can’t make Lynn smile anymore?

My go to when her lips are barely moving and no sound is coming out is to say, “Not so loud.” She likes that one.

Six months ago, I had a whole morning routine featuring her, the Slo-mo Turtle. That got pretty elaborate with the log she lived on, her forest friends, and all kinds of silliness delivered with the staccato of a nature documentary. That routinely got not just smiles, but guffaws.

Early in the week I told her I got stuck in the driveway waiting for a gaggle of Garfield Elementary students to walk by on their return from downtown. And how some of the umbrella-less boys were drenched. The former elementary teacher smiled widely at that image.

What a difference a week makes. Today, I needed Jeanette’s help to get her to muster a slight smile.

She is not in pain and was quite peaceful when I left. But she’s waving the white flag.

We’re at mile 26 of the marathon.

It’s Happened

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A large part of the rationale for the move to the Adult Family Home three months ago was that I could recover, and therefore Lynn and I could heal and get in sync, and spend whatever time is left as positively and peacefully as possible.

I am not in a good place, but a much better one. Way, way less stress. FuFu, Alison, and Jeanette, among many others, have saved me.

As a result, for the last two months, Lynn and I have enjoyed my visits. We look at photo albums. We listen to music. I tell her about my day. We loop the hood.

Most of all, we touch. I hold her hands and massage her calves. She hugs me tightly as if she’s not going to let go. We press our foreheads against each other. I caress her head as she falls asleep. We kiss.

It’s how we communicate.

I’ve never partnered with someone who is dying, so I’m improvising. All the time. What to say?

Last week I kneeled on the floor next to her hospice bed as she cried before napping. I told her I loved her and that she was okay, which of course, was untrue. Then I told her how sorry I was for what she’s experiencing. And that she’s been fighting it every minute she’s been awake for a few years and that was why she was completely exhausted. And that I wanted her to Rest even if that meant being alone. I told her how much I am going to miss her. More tears.

Then I told her she wasn’t alone and wouldn’t be alone. That she is bearing the fruit of having built such a caring and loving family.

We have had a much more intense relationship than you would probably guess. Intensely good most of the time, intensely bad some of the time.

I told her I was skimming an old Apple Note I wrote from when we were in marriage counseling five or six years ago. And how my one regret is all the time we wasted being mad at each other. I asked her to forgive me for being so stubborn and selfish. More tears.

I suspect she wanted to say something similar, but I was okay with her not being able to because I wanted to take most of the responsibility for our epic, sporadic struggles.

Even though we wanted to at times, I told her we never quit, and that was something.

In hindsight, we probably wasted 10% of our time together being too mad at each other to thoughtfully interact. Even though we learned to repair things, 10% of 38 years is almost four years! What we would do to have four years back.

More than Lynn, I accepted that we were never going to coast conflict free like some couples seemingly do. That the heartache was part and parcel of the intense intimacy. Again, in hindsight though, I wish we had far fewer, less intense conflicts. Fewer days where we couldn’t even talk to one another.

My unsolicited advice. Don’t take whatever committed relationships you’re in for granted. Be as proactive as you can. Trust one another enough to talk about what lies below the surface so that resentments don’t build up. Learn to listen and get more comfortable probing your partners’ feelings. If possible, by yourself, or together, enlist the help of a professional to learn to have fewer, less intense conflicts.*

Most of all, don’t assume you have many years and decades left, because you may not.

*LOL, I’m gonna get slammed for that wee bit of hypocrisy. :)

Downdate

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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

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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

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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

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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.”

Paragraph to Ponder

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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.

In Sickness and in Health

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Shout out to Redmond, WA and Hong Kong for the recent ever-so kind and encouraging words. Words that have inspired me to share this post from the other blog writing I’m doing just for friends of Lynn interested in knowing how she’s doing.

Just as there are two distinct Lynn MSA stories to tell, there are two distinct ones that I could tell about myself as primary caregiver.

When you tell your own story, you run the risk of making yourself into a hero. Of emphasizing all that’s admirable and slighting the inevitable messiness and selfishness. This story is hella complex with contrasting personal histories all mixed together with psychology, mental health challenges, emotion, and spirituality.

Thus, the Reader’s Digest version.

Lynn’s predicament is way, way worse than mine, but I’m as unhappy as I’ve ever been. Lynn’s only advantage is that her challenges are obvious to the steady stream of people who visit. People mostly look past me, assuming I’m fine, which I try telling myself I am.

But that’s bullshit. I’ve never experienced anything remotely this challenging. And I don’t feel like I can tell the whole story to anyone because who would have the capacity for the whole damn thing? Simpler to say “fine”, “okay”, “hanging in”, “coping”, “keeping my head just above the water”. I’m a five tool player when it comes to keeping people at a safe distance.*

The sad fact of the matter is I have had to sacrifice everything that brings me joy, especially social connections, in service of Lynn’s daily needs. I have been housebound for exactly a year now. Except for a daily shortish run, ride, or swim. Without those physical activities, I don’t know where I’d be.

I also don’t know where I’d be without our two health care assistants, my two daughters, and Lynn’s closest friends who keep showing up for her, and by extension, our family. People keep making meals for us even without the Meal Train. People are praying for us and sustaining us with flowers, fellowship, and love.

Still, I recently told Lynn I don’t know how long I can carry my half. And feeling abandoned just at the idea of some alternative arrangement, she broke down. And for now, to make a very hard thing even harder, things suck between us.

Hearts will soften and things will improve. They always do. But this challenge will not lessen. I feel overwhelmed almost all the time. I am no match for this relentless disease. But doing the best I can for her. Today at least.

Postscript: I have caught a second, or is it third, or fourth, or fifth wind? And hearts have softened and we are back on track. For now.

*a baseball concept for a player that excels in all five key areas: hitting for average, hitting for power, running speed, fielding ability, and throwing arm strength

Sorry

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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.