Hospice Care

Hi friends.  Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week.  As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly.  Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.

As much as we knew this was coming, it’s certainly an adjustment.  Trish has long held that she wants to stay home and we want that for her as well.  Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.  

In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition.  ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage.  While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.

Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development.  So grateful for your love and prayer for Trish and our family.

God’s Living and Active Word

I’m not sure a passage of scripture has ever spoken more directly to my heart than the following Psalm from the new Passion Translation (TPT) of the Bible. If you have a minute, I want you to find a quiet space and read these verses out loud to yourself. Even though these words, I’m sure, were written solely for me today, I’m happy to share the blessing with you. 😉

Psalm 42 

42 I long to drink of you, O God,
drinking deeply from the streams of pleasure
flowing from your presence.
My longings overwhelm me for more of you!
My soul thirsts, pants, and longs for the living God.
I want to come and see the face of God.
Day and night my tears keep falling
and my heart keeps crying for your help
while my enemies mock me over and over, saying,
“Where is this God of yours? Why doesn’t he help you?”
So I speak over my heartbroken soul,
“Take courage. Remember when you used to be
right out front leading the procession of praise
when the great crowd of worshipers
gathered to go into the presence of the Lord?
You shouted with joy as the sound of passionate celebration
filled the air and the joyous multitude of lovers
honored the festival of the Lord!”
So then, my soul, why would you be depressed?
Why would you sink into despair?
Just keep hoping and waiting on God, your Savior.
For no matter what, I will still sing with praise,
for living before his face is my saving grace!
Here I am depressed and downcast.
Yet I will still remember you as I ponder the place
where your glory streams down from the mighty mountaintops, lofty and majestic—the mountains of your awesome presence.
My deep need calls out to the deep kindness of your love.
Your waterfall of weeping sent waves of sorrow
over my soul, carrying me away,
cascading over me like a thundering cataract.
Yet all day long God’s promises of love pour over me.
Through the night I sing his songs,
for my prayer to God has become my life.
I will say to God, “You are my mountain of strength;
how could you forget me?
Why must I suffer this vile oppression of my enemies—
these heartless tormentors who are out to kill me?”
10 Their wounding words pierce my heart
over and over while they say,
“Where is this God of yours?”
11 So I say to my soul,
“Don’t be discouraged. Don’t be disturbed.
For I know my God will break through for me.”
Then I’ll have plenty of reasons to praise him all over again.
Yes, living before his face is my saving grace!

Amen, amen and amen!

Rudy’s Birthday

Dear Rudy,

Today would have been your 11th birthday. I lay here nearly motionless, unable to celebrate you today the way I would like, which seems to add to my heartbreak. I wish I could spend the day doing your favorite activities, spending time with your favorite people, and eating your favorite foods. Instead, I’m forced to navigate today…still…quiet…with only my memories of you…how valuable those memories are to me now.

Know you are in every nook and cranny of our family’s existence. The reminders of you that surround us are both subtle and not-so-subtle…

I’m thinking of you, missing you, and sending my love always, big boy.

Relentless

September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.

If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.

We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.

2 Years

Our family appreciated having a quiet day yesterday filled with various individual activity as well as time together. We even made time for a viewing of Cars… which never gets old. Vivid images of July 25, 2017 flooded my mind all day but images of happier times also flooded my mind and helped temper the pain a bit. A big thanks to all who sent cards and messages via text and email… every one a reminder that we are surrounded by friendship and love. We love you right back.

Gap Fillers

Having experienced the front lines of two major health crises, I’ve grown in my understanding of and appreciation for our health insurance. We are blessed and I’m grateful but navigating the complicated health care system in general is never free of frustration or big gaps in coverage & care. As Rudy’s primary caregiver and now as a patient, I’ve shed my fair share of tears over denials and bureaucratic dead ends that just don’t make any sense and end up feeling like salt in an already wicked wound. The big gap we’re facing right now is in home health care. I don’t qualify for short term rehabilitative care, nor long term hospice care (yet) and government assistance through the social security administration based on my diagnosis is out of my reach because of my lack of work history. I don’t share this to whine or engage in a political debate about health care reform but simply to illustrate that no matter how hard we try to protect and take care of ourselves, there will always be gaps in the system…which is why “it takes a village” and why I’m so grateful for mine.

For the past year and a half, these lovely ladies have been on a regular daily rotation doing my house chores & errands and in recent weeks, have helped fill the gaps in my personal care! It is humiliating and sometimes uncomfortable but how grateful I am for the tender, hands on care of these friends willing to learn how to fill a feeding tube, wipe my dirty derrière or give my fatigued muscles endless massages with no promise of a payback!!! I am humbled.

What blesses me further is that these women represent a fraction of all the friends who have offered to help…and those who come alongside us in a variety of other ways too numerous to list. So, dear village, in case I don’t say it enough, thank you. Thank you for being the hands and feet of Jesus for me and encouraging a fragile heart in the process.

My favorite gap fillers of all!…

The more dependent I become, the more grateful I am for my peeps. But there is a flip side and the more dependent I become, the more I fear being remembered as “ALS Trish”. Rolf eloquently addressed my fear in his latest poem:

“I hear you singing
The melody dances
Gracefully floating
Spinning in the air above me

I hear you laughing 
From deep within
With head thrown back
Wind and sun in your hair

I see your eyes 
Focused and inviting
Drawing so many close 
Into safety, warmth and friendship

I see your hands
Nimble and skilled
Creating beauty
Patting a happy head
Bringing order
Gently soothing a troubled little body

I hear your voice
Softly reassuring 
Forging connection
Welcoming and connecting.

Committed to see what’s really you
Not the distortion before my eyes
The preciousness of each second 
Makes the robbery of so many days 
more gutting a crime

To think that love could ask this much
Yet leave me here with empty arms
Though tears may fill my eyes
They won’t be what floods my memories

I promise”

The dedication of the remodeled rescue mission on June 20th was so rich. The generosity of so many resulted in an overwhelming honor for which our family is deeply grateful.

We Wish You A Merry Christmas

 

The boys got home late last Friday night and have already enjoyed a week of pre-Christmas fun.  Poor Olivia had to endure one last week of school but is officially on her Christmas break as of this afternoon and is ready to party.  We are planning on having a quiet Christmas here at home and looking forward to a Geyling Family reunion in the days following Christmas.

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The boys at the SBRM Christmas celebration with Nancy, a longtime friend and former(!) homeless guest. 🙂

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We wish you a very Merry Christmas, dear ones.  I know I’m not the only one trying to find balance this season…longing to feel the suffocating burden of grief and pain lifted for even just a moment…looking for fresh revelations of God’s love.  My prayer is for us all to be engulfed by tangible expressions of God’s love, overwhelmed by His light in whatever darkness we may find ourselves this Christmas and to have lots of reasons to laugh.  Bless you friends!

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