July : 2023

caregiving....

i could type = exhaustion and end this.

and i do not intend to be exhaustive here. too many things to say and too hard to say them.

this is an update of sorts of these past few days of caring for mom. too much to post in a quick fb post. (and will count as my July post!:) this is just a brief look into what is part of our daily life....

the past 7 months (post seizure, additional stroke, death of her two siblings, three hospitalizations) have brought new hardships for mom. she is significantly weaker, weary, and at times confused. (memory issues and similar) 

she seemed more so of all of these the past few days. 

since she came home on Dec. 24th, we have had the help of a home health agency. it feels like a fight to keep that, but so far we have. (the biggest plus of that by far is the godly CNA who helps with bathing needs!)

so on Friday morning just before 8am i spoke with Mom's HH nurse wondering about doing some blood work. He agreed: and reached out to her Dr. for the order. long story short....that order wasn't sent until 4:45pm...too late for it to do any good.

it's debatable if blood work is needed? I know that. I'm certainly not a Dr. to read blood work! but it would have perhaps helped us understand as we went into the weekend if anything "serious" might be happening. 

rather than bloodwork or a visit: the home health care agency and the doctor's office all started "advising" us to take mom to the ER. (can you say cya....)

rather, we continued to check vitals, made sure mom was breathing deeply, and that she was hydrated. and asked people to pray.

an additional issue is that tests show Mom needs O2 added to her CPAP machine; this O2 need has developed in the past few months. we've been working on this for 3 months: a ridiculously unacceptable amt of time for this not to be resolved. this could be at the core of what's causing these concerning symptoms.

so here we are on this sunday afternoon: at home...not in the hospital, thankfully!! Mom seems stable enough....a little better, even.

it doesn't serve any purpose to overreact. nor does it help to angrily blame health care people. on the whole, we've been very fortunate in the kind, appropriate care we've gotten across the years. Of course, there is some incompetence happening here. no doubt. 

We have 23 yrs of experience of reading mom's symptoms. they've always been intense and critical. they're just worse now.

what we do not have is the power to order tests or insure needed care.

would it be any better if there really was true palliative care support available in this country?

idk: because there isn't.

there's some support if you enter hospice. (that's another discussion for another day....because I truly understand the ins and outs of hospice care better than most.)

there's some support if you qualify for medicaid. (which we don't of course.)

i hear there are better supports in some states. But definitely not universal across the country.

I have been hiring a little help in the past few months: that has not been easy or consistent.

Mom seems well: she's been eating icecream & brownies and singing along to a church service:) she has her bible out to read. we're grateful.

she is remarkable.

coffee, candles, rest, and rain are happening here, too:)

I quote again my favorite words for our situation:

"We get by on grace...just not the kind that makes us look good." (Winner)

at 50....i am two years away from when Mom's catastrophic stroke happened to her. 

I'm learning to make peace that there probably isn't a plan b for my life: this is it. and a lot of it has been good. a lot of it has been very very hard.

i used to have some interest in using all that I've learned about caregiving/chronic illness in advocacy (like to congress or something like that....always pretty fuzzy in my mind.) i'm pretty sure congress isn't concerned. 

these days i just want to rest. 

and to keep truly empathizing with the folks I walk beside in chaplaincy (i really do know how all of this feels.)

and to sit on a beach somewhere and let go of responsibility for a long, long time. 

i guess we'll see if any of that happens:)

when i'm able to be out in nature i find it relieves stress....

kind friends brought goodies to church this morning...that's always encouraging.

and the prayers helped, I think.

so we will keep on getting by on grace.....

 

June : 2023

Health...

I have been quite healthy in these 50 years. I don't take that lightly. I have a frontrow seat to illness: my mom's and others'.... so in many ways I have a Good understanding of just how fragile and tenuous our health really is...

about 7 years ago I hurt my foot. banged it up after a weird and unsettling massage (that's a story for another day.) so many details, but the long and short of it all is that after all this time it's still hurting and swollen: many doctors, physical therapists, tests, hopes for it to recover....but it's still not ok. my leg and hip have developed issues and the whole thing (while SMALL in the whole scheme of life) has been very frustrating.

most recently, chiropractor treatments and massages have helped. I have the best insurance currently that I've ever had (thanks to the affordable care act) so I've been accessing needed care more consistently. I saw a new doctor this week, a rheumatologist. this was after some bloodwork showed some AI concerns. it seems unlikely that those are truly concerns for me (thankfully!)....but this new doctor talked a lot to me about the overall affect stress can have on our muscles and psyche. I'm pretty aware of this. sometimes I think I manage it all as well as any person could....but I also live with awareness of the lacks in my life that might offset the extreme hypervigilance and exhaustion that over 20 years of caregiving has included. this new doctor also talked to me about sleep: she used the term "sleep hygiene" which I think is new to me. so I looked it up and have determined to Do Better!! I've started this week:)

there's only so much any of us can do about our health (there's a lot of randomness in it all, in my humble opinion) or about our stress. but I can purposely turn off my ipad and iphone when it's nearing time to go to sleep: can allow my brain to rest from that artificial light. can turn off texting. can pick up a book and my actual bible and benefit from growing my mind and my spirit....

the past 7 months have been brutal. but we've stayed out of the hospital this month! (yay!). my health realities could radically change tomorrow (and so could yours). for now, I've been able to start walking again and have a little more breathing room. I'm taking in very little of the awful news cycles; I'm listening more to calming music and such. I do have a counselor I see now and then. I'm doing things I know to do to treat my weariness and stay as healthy as possible.... 

*I offer these honest thoughts, hoping others might care for themselves better, too. 
*I will be glad when this once a month blogging thing is over:)

April and May : 2023

just a few thoughts on this quiet Sunday....

I used to use the phrase “carry” to frame experiencing both the hard and the lovely stuff of life. I tend to not use that much anymore. I prefer thinking of "sitting with” or “sitting in” the emotions of our own lives…..
Not over distracting ourselves….not looking for escapes or ways out….Not looking for lessons.

Not carrying on as if nothing traumatic has happened…
Feeling the feelings and allowing those to show us the good and the ugly of ourselves….of living. 

April and May were full of the feelings:)
Scary hospital stays with my mom both months. teetering right up to the edge of falling off the cliff of sanity.
Sitting in uncertainty. Holding onto Hope that is not of my own manufacturing.
Turning 50 !! (the whole reason for this monthly exercise of blogging in which I’ve now failed:) combining 2 months will just have to suffice! grateful for friends and family who helped make that bday a joyful time...
Knowing my utter weakness / inhabiting my own remarkable strength (and acknowledging that of my parents.) 

I could write multitudes of words on “surviving” “self-care” and the like. It IS good to have methods of coping. I have a few. But I don’t feel like writing words explaining things that most people won’t ever have to understand. And some of my methods are less available in these thick times of what sometimes seems like relentless sadness. You keep your head above water…and keep going the best you can. Nobody is coming to rescue you….so all the deep breaths and deep truths you’ve gathered deep in your soul over lots of years will have to keep you afloat….
and you don’t sink…

I came across this author for the 1st time a few days ago. I'm trying not to allow myself to buy anymore books these days!! so I'm Not buying her books!!:) her words are reminiscent of Nouwen's. 

The goal (for me) is not just to continuously sit....but to become more open….

"Wounding and healing are not opposites. They're part of the same thing. It is our wounds that enable us to be compassionate with the wounds of others. It is our limitations that make us kind to the limitations of other people. It is our loneliness that helps us to to find other people or to even know they're alone with an illness. I think I have served people perfectly with parts of myself I used to be ashamed of." (Rachel Naomi Remen)

March : 2023

this is one of those days I'm not really into posting anything. but I'm soldiering on in this once a month commitment:) just posting some kinda random ideas that have been floating around in my mind...

people aren’t projects we check off a list.

people will disappoint you

you will disappoint others.

people will surprise you….in beautiful ways.

we all do pretty much exactly what we want to. we make time to go and do and support or not support what we want to….. (significant illness is one real caveat to this)

I've never regretted "giving". we live in an age of "self-care" and I'm all for that. but it's never simple. we're all connected to one another....and caring about what happens to another person (esp those closest to me) IS self-care....

we will only “make a difference” in the lives of others if we’re willing to dig deep and get through our own stuff….

but we don’t actually make the difference : the Holy Spirit has to do that….sometimes through us.

it is true that my own life experiences provide good ground for serving others with empathy. but I also tend to have a pretty low tolerance for whiners. Sometimes the line between compassion and take no bs can be pretty hazy for me. I have to watch this;)

I’m willing to work really hard….for a lot of things. But I’ve stopped fighting so hard for some things. some connections.  maybe I’ll make peace with that someday.

there’s always always always more to the story than what you can easily see.

so much more is alike about us than what’s different about us. if we just bother to look and learn from one another.

I’m not sure we really get much wiser as we age…maybe just more realistic if we’ve been beat up a bit by life. (which applies to most folks…though there do seem to be those special few that escape unscathed:) I hope I’m getting softer as I’m getting more worn, too? (like the Velveteen Rabbit). there’s certainly the risk of that Not happening…

The balance tipping us towards wisdom vs irrelevance (perhaps) is figuring out how to stretch and stretch and stretch….without breaking. The stretching seems to work as a winnowing process. As we understand a whole lot of things don’t matter nearly as much as we were once led to think…

a lot more than meets the eye has the potential to break us. so very aware of this…

“ministry” shouldn’t be something we do To another person but rather With. the process is reciprocal. or it’s hollow. (if you’re brave, ask me sometimes what I really think about the word ministry often being so misused)

grace & forgiveness….over and over again…are what get us through. sure, there are other things that make us resilient (I kinda hate that word) but those are the bottomline must haves…and laughter…that’s a must have, too!

“True confidence is living in uncertainty : and still moving forward.” a quote I wrote down recently….can’t remember for sure who said it! but it’s where I’m living most days. Age hasn’t brought more certainty for me….but more awareness of complexity. And more understanding of my own dependence and need for God’s goodness and mercy. It’s an honest if not always comfortable way to live…this song has been on repeat for me the last couple of weeks. it's an anthem to hold onto....

February : 2023

the problem with publicly committing to writing a blog every dang month of your 50th bday year....is that then you have to....do it. (nothing would happen if I didn't of course!) the thing is: that's easier said than done.

I know "a little" a very little mostly it seems...about a lot of stuff. caregiving and loving and observing and assessing and faith and illness and emotions and supporting and grief and facilitating and suffering and joy and performing and music and justice and disability and thinking thinking thinking (and more thinking:)

but I also know how flawed I am in the pursuits of all the things I care about... I don't much care to put my thoughts out there like I'm clear on it all. I mean I might do it:) But along with a fair amount of confidence in my own competence......is a high amount of self doubt and self awareness of my flaws. more so the older I get. maybe that's a good thing.

I've been sick three significant times this month. it's weird for me to slow down. I know it's my body talking to me. I understand the impact of prolonged stress and I'm trying to take care...

It's had me thinking about my own finitude. rather than writing a bunch about that I'll lean into these words from Kate Bowler for Lent....

speaks my heart....

"A blessing for Ash Wednesday"

God, today our finitude is rubbed on our foreheads.

The reality of our limits, our fragile bodies,

spoken over us like a curse:

from dust we are made

to dust we will return.

Some days we need to be reminded

that we are not the perfectibility projects

we set out to be.

We are full of bounce and brimming with hope.

All woes, solvable. All problems, a distant whisper.

When we don’t feel like dust,

Bless us, oh God,

in the ways we trick ourselves into believing,

that our lives are something we’ve made,

that all our accomplishments and successes and mastered mornings

add up to something independent of you.

But on days like today, when our heads hang low

Sunk with the grief of our neediness,

Bless us, oh God.

When our joints don’t work like they should,

when we grow sick or turn gray too soon.

when our bodies betray us…

or perhaps they are doing exactly what they are supposed to do.

Tell us again

exactly how you made us:

from dust to dust.

Blessed are we, a mess of contradictions,

in our delusions and deep hopes,

in our fragility and finitude.

January : 2023

people handle turning 50 different ways, I guess.... I'm not sure how I'm handling it:) But I mean to mark this year blogging every month. not to share anything really momentous or divulge the great and wise things I've learned thus far:) (the older I get the less I realize I know!) but just to think through and document in small ways where I am at this point of my life journey...

I read a meme a few days ago that said in gist "we've perfected the art of oversharing while revealing almost nothing about ourselves." that's about right, I think, of social media much of the time...including blogging for sure. remember those heady old days of blogging, though.... they certainly felt more real (whatever that means) than fb & such often does these days. And we're more guarded now: politics and pandemics and painful times will do that....

I hope however I share my story.... words, relationships, work, music, caregiving, worship...is founded in what is true about my heart. and is at least a little bit of a worthwhile sound in this big, busy, hurting world.

one day maybe I'll read back through all of the old blog posts. I shudder to think of it:) comments are turned off now.... I need to clean up all the unsecure, stalker ones. so my vast readership will just have to be satisfied with fb link commenting;) 

so many people I know are so happy 2022 is done. I surely am. the past months have been full of loss and sadness and really really hard times. overcoming and resilience and loving moments, too.... but I'm learning not to rush to those points. to sit for awhile in the emotions and let them teach me more about living... so here's to 2023. to turning 50:)....to blogging again:)

I recently came across this poem for the very first time! speaks for me...

my "resolution" for this year has been to get walking again. like most almost 50 yr old women I'm struggling with my weight... but, more importantly, my spirit needs to be moving and outside. I know just a little about the restorative qualities of sound and nature.... but I know what helps heal my heart. I pray best outside. I'm needing to sticking pretty close to home these days...luckily I can find some beauty at a local park....

July 2022: a new blog

 

the commute to New Orleans is a killer….no doubt about that. but I’m lucky and get to time it out well. unlike my grandpa and dad and many (mostly) men who’ve done this brutal drive day after day 5 days a week in all sorts of crazy weather. but the reward of working a long day are views that soothe my spirit no matter how many time I’ve seen them. the skies, the water, the ever changing colors… it’s never safe to take pictures while driving! and it’s mostly a waste of time! I can’t capture it. But that doesn’t stop me from rolling down the window again and clicking away with my phone. The hot heavy air rolls in….humidity tangible. I doubt we’ll ever have rampant fires over the swamps here even with the increasingly high temperatures: there’s water everywhere...

it's been almost 2 years since I've officially blogged. no great loss:) This drive home is just one of the many things that have changed in the world in that time. overall, this career change...this role of chaplaincy is a Good change. lots of other changes are pretty troubling. much instability in our world, our country. in communities. in relationships. our caregiving situation, Mom's health. 

I think the intensity of hospital work, much of it palliative care - suits me. maybe because for 1 thing realities are stark here. Less gameplaying, less room for foolishness. More space for telling the truth about the precarity of life (as i heard someone phrase it.) More room for acceptance and grace here, too....

one of the first visits of this day included singing "Pass Me Not Oh Gentle Shepherd" with a struggling patient (her request.) my last visit with a man of Hindu faith tearfully sharing words of prayer from his tradition (at my request). I see how all the chapters of my life have prepared me for this work....at least for this season. this season of living in this Louisiana landscape for longer than I could have imagined. living in as much light as I can find...