What Should I Do With the Coffee?

Original Painting of a Palm with its fronds blown away
I feel like this palm tree. Buffeted by the winds. Still standing strong.

The strangest things blow me away.

I opened the refrigerator and there are leftovers of food he took a few bites of.  Today it will be five days since he’s eaten anything.

I went to make coffee for Cody and me and there was cold coffee there from yesterday.  I looked at it for probably two minutes.  Normally I would have poured it in the carafe in the refrigerator to save for Larry’s iced coffee.  I couldn’t pour it down the drain.  That seemed like giving up.  I couldn’t put it in the refrigerator.  That seemed like relentless hope.  So I left it there and walked away.

The laundry can blow me away.  I did a wash and folded his shirts and shorts and wanted to cry.  It’s not that I haven’t cried.

I finally slept til 6 am this morning after many nights of giving up sleep at 4 or 3 or 1:30 AM.  I rolled over to put my hand on his heart and hold him.  I didn’t realize I was crying but the tears rolled down my cheeks.  I took a deep breath and tried to hold us both with quiet loving energy.

The hospice nurse came yesterday at our request.  He gently examined Larry.  He seemed sad.  He confirmed what Cody and I had been talking about.  The signs of the end are there.  Larry’s has only had drops of water for the last few days.  He is waking only for short periods.  The nurse’s guess was within 5 days.  He said if things got too hard for us to manage by ourselves they would send a full-time nurse.  He suggested we stop all meds except for comfort meds.

As I suspected, this is what hospice does well.  The last days.  The active dying.  Not the slow dying leading up to this.

Yesterday was April 1st.  In the morning I wrote in my journal that maybe Larry would wake up and say “April Fools, just kidding.” I didn’t mention it to Cody. Last night Cody turned to me and said, “maybe he’ll just open his eyes and say ‘April Fools.'”  Larry would like that we separately we thought that and got a laugh out of sharing it – a way too big laugh.

When he is awake, he does respond a tiny bit with small raises of his thumb or minute shakes of his head.  He’s tried to say things to us but it’s so damn frustrating because we feel helpless that we can’t understand and we haven’t yet guessed right.  We feel so helpless to help him communicate.

We know by thumb raises whether or not he wants pain meds – mostly not, but we do pre-treat him with morphine before we clean him up.  Yes, unbelievably, he is still going.  We finally gave him Imodium with the hopes of binding him up so we don’t have to put him through the pain of continual cleanings.  Who would think of Imodium as a comfort med?

On a side note, one of the caregivers on the Multiple System Atrophy Facebook discussion group said in response to my post about Larry’s extreme reaction to the enema that she had found that hospices were way too aggressive about treating bowel issues.  We’ve found Mountain Sage Smudge Sticks a better air freshener than Febreze.

Our three kids are talking to each other.  Mostly about how to best take care of me.  My friends are talking to each other, and to my kids.  Mostly about how to support me.  One friend was going to pick up Mexican food for Cody and me last night.  She texted the menu and asked us to choose.  We were helping the CNA clean Larry so I didn’t respond.  Shortly thereafter she texted back not to worry – that my daughter Krista, in San Franscisco, had chosen our dinners and she would deliver them at 6:00.  Krista chose well.  The food was great.

I’ve been an independent, take charge woman my whole life.  It is so strange to have this back and forth between friends and family all going on behind my back.  So strange and so wonderful.

They provide a safety net of love.  In a different way, they blow me away.




Patient and Caregiver and Bride and Groom

The Wedding CakeWhat to do for Valentine’s Day when you’ve  just been kicked out of hospice after losing your appeal?  You be both patient and caregiver and bride and groom!

We renewed our vows on Valentine’s Day.  Not in the crowd of 400 that renew their vows every year on Siesta Key Beach but in the front foyer of our home surrounded by neighbors.

We spent the afternoon at the doctor’s office, getting Larry’s prescriptions replaced, the wounds on his heel and nose examined, and figuring out what to do about replacing all the respiratory equipment that hospice supplied which we use every day.  Unfortunately, the doctor had never received the hospice notes so it was a complicated meeting and we couldn’t accomplish everything.

Then we zipped by the bakery to pick up the cake and came home to get dressed.

Caregiver and Patient Become Bride and GrromThe bride wore a red tunic with a glittery heart over flowing white slacks, the groom wore a black golf shirt and khaki’s and his power wheelchair.  They took their places to the sounds of a sing-a-long of “Goin’ To the Chapel of Love.”   Live music was performed by the husband of a woman the bride had met in high school and had reconnected with just three years ago here in Florida.  The officiant was a neighbor and long time friend from up north who the bride had married seventeen years ago in Massachusetts. There were heart shaped balloons and red roses, champagne, and cake.

A neighbor said he’d been worried it would all be a tear-jerker, and although there were a few misty eyed moments, there was also a lot of laughter.

We wrote our ceremony, based on our first wedding.  As we said our vows this second time, Larry gave me a big thumbs up when I repeated that I’d care for him “in sickness and in health.”  That cracked up everyone, including me!

In a surprise of technology, two of our children who work at desks in universities were able to join us through a special conference call and even able to speak, telling us and everyone gathered what seeing our love and our relationship meant to them both over the years and as they watch us now.  That was so special!!!

It was wonderful for us to be able to tell everyone present what their support over these last three years has meant to us.  We included a sand ceremony based on an ancient salt covenant, symbolizing the bond created as once the grains are mixed together they can never be separated.  Larry and I each added sand to a beautiful ocean colored vase, added sand from each of our children, then asked each neighbor to come up and add a bit of sand as well.

At the end we offered a toast to everyone present saying that the measure of a life is how well you love and how well you are loved, and thanks to them we felt blessed to have accomplished both.

Why did we do it?  It just seemed right.  We didn’t give it much thought.   Had I thought about all the details, all the work, all the energy it would take, I might have thought harder.

Bride and GroomAs I write about it now, three days later, I know exactly why we did it.  In this incredibly difficult and heartbreaking journey we are on together,  we need to acknowledge the the strength of our love and the possibility of continued romance. We need to not just be caregiver and patient but also bride and groom!

No Expectations

Original painting of a great heron and a quote about expectationsWe had a good night last night, although I had no expectations of it.  Hurray for a good night!  He slept quietly so I slept quietly.

I don’t know why it was quieter, maybe a quieter day, at least for him.  Maybe because we didn’t take him outside (though the wind’s been from the east sending the Red Tide toxins away from us).  Who knows?  I can’t figure out the bad days and I can’t figure out the good days.  But we’ll take them!

I read about an old Zen saying “fishing with a straight hook,” in the book “Being with Dying, Cultivating Compassion and Fearlessness in the Presence of Death,” by Joan Halifax, that I referred to in yesterday’s post.  That expression just struck me, though I am no fisherman.    But it is such a clear visual analogy for no expectations.

If I have no expectations, I can accept whatever comes.  Good or bad.  I can be present for whatever happens.  I can sit by the side of the stream, watching the water flow by, with my fishing pole and my straight hook.

That’s my goal for today.   That and accepting with grace all the help that is being offered us from our amazing family, friends, and neighbors.

Maybe it’s the same thing.  If I have no expectations of myself or others, I can accept all they are doing that I can’t do.  My visiting family are all doing chores – fixing, cleaning, repairing.  My neighbors have created a Care Calendar to take turns bringing food to us.   I am so grateful, albeit slightly uncomfortable.  Though I have a straight hook, the fish keep jumping into my lap.

Expecting nothing is different than having no expectations, isn’t it?  Expecting nothing, I feel surprised and uncomfortable about receiving something.  Having no expectations, I can appreciate and enjoy whatever comes.



Hospital Transitions Require Both the Patient and Caregiver Being Well Taken Care Of

Original painting of two chicks and quote "Share Your Vulnerabilities" because that's how you get well taken care ofSo good to be home and well taken care of!!  Even before we left my friend Joan  offered to grocery shop for me.  I said no, then took it back.  “I’ll shop online at Walmart and you can pick it up.” It was in the cabinets by the time we got home.

The kids have arrived – two even before we left the hospital, another two last night.  We left with respiratory equipment and all kinds of other stuff for his care.  We were very tired but happy to be heading home, even though we were well taken care of by the wonderful caring people in the hospital!

The moment Larry knew we were going home he insisted I put his clothes on.  Really?  He didn’t like the hospital gown fashion statement?

He was so weak I had to struggle to hold him up and get his pants on at the same time but he refused to wait for the staff to come and help.  As soon as he had his clothes on he started breathing better!!!  A new cure for respiratory patients! My daughter, the researcher in geriatrics, confirmed that research actually shows that being in your own clothes, even in the hospital, improves healing.

The kids have have helped me learn how to use all the pieces of respiratory treatment equipment we have.  They’ve sat as the home care nurse went through the paper work and asked questions I wouldn’t have thought of.  They’ll remember things that were said that I can’t remember.  They’ve helped with Larry’s treatments, gotten medications and fixed him protein smoothies.

The first night home was so scary.  Larry could barely walk after a week of not walking, and his breathing was still so gurgly and labored.  Almost worse than when we went to the hospital.  He kept ripping the CPAP mask off because it was hard enough for him to get a breath without having something in the way.  The sound was exhausting for him to make and torture for me to hear.   I kept helping him sit up at the side of the bed to get a good breath, and repositioning the mask.  Finally I transferred him into his wheelchair (incredibly difficult by myself, given how weak and shaky he was) to see if sitting would be easier.  Even asleep he was so restless, flailing his arms and tossing off his blanket.  I couldn’t sleep

The kids were sleeping in the next room but I didn’t want to wake them. They’d flown in on red eye flights.   I was a basket case by morning, and I knew it.  Finally I said “uncle.”

I felt so guilty to say I didn’t want to sleep in the room, but they jumped on my vulnerability, dragging out blow up mattresses and making up extra beds.  They insisted they would take turns sleeping in the room with Larry and I would sleep on a queen size mattress in the living room with my own pillows.  I said “no, the couch is comfy,” but they rolled their eyes and kept making up the bed.  “You’ll sleep better if it’s a more normal bed with pillows and sheets.”

They were so right!  I am so rested! Not only are they taking care of Larry, they are taking care of me. It’s luxurious.  I realize how much help the caregiver needs to make the transition home, both physical and emotional help.  It’s comforting to have them here in every way. I feel so well taken care of.

Larry still had a rough night, although not as bad as our first night home.  He sounds and looks slightly better.  He even made a joke about starting a respiratory clinic with all our equipment.  When he jokes, the world is a better place!

Giving Help, not Receiving Help

Original Hardaway painting Accept HelpI’m very good at giving help, not receiving help.  I knew that about myself but I didn’t understand how it was impacting me until this hospital stay.

It’s natural for all of us to be good at one thing and not so good at others.  I’ve learned that often our competence and incompetence are mirror images of each other, opposite ends of the same spectrum. In my Gestalt leadership training we called it polarities – two ends of the pole.  Like outspoken and quiet, or detail oriented and big picture – opposites from each other. Giving help, not receiving help.

I’m very practiced at giving help professionally as a teacher, leader, and executive coach.   And certainly I have becoming practiced at giving help personally.

Too good, perhaps.

It’s become an overused competence.

It’s my default behavior.  It’s like I’m sitting at the very end of a see-saw of giving and receiving help.  There is no balance.  When Larry was admitted to the hospital from the ER a case manager asked if I wanted home health help when he went home.  I said “no, probably not.  We’ll see.”

Really?  What was I thinking???

I was thinking I can take care of him. No big deal.  This is just a little more. I should be able to take care of him. I’ve been taking care of him.  Plus I’m uncomfortable about strangers coming in and out of my home.

After two nights of no sleep I had to be told by Larry’s hospital nurse to call friends for help.  Any number of friends would have come but I didn’t think to call anyone.

I have a very well developed competence of giving help, not receiving help.  Plus I have a highly developed competence of being independent.  Maybe the combination is a recipe for a disaster.  Caregivers have a greater risk of getting sick themselves, of developing dementia earlier than non-caregivers.  I don’t want either of those consequences.

I know I have to find balance.  I need to learn to receive, to remember how people who love Larry and me want to be able to give to us.  How we would want to give to our friends or family if they were in our situation.  How much we have given of ourselves to others at different times of our lives.

I know I need to learn how to be a little less independent.  Though it’s served me well through my life, now it’s getting in my way.  I obviously can’t even see when I need help, because I say no when it’s offered.  GRRRRR.

I’ve heard of a yes game, where you have to say yes to whatever is offered, the idea being to open yourself to new things.

Maybe I should try my own version, saying yes to every offer of help that comes my way.

Photo of our local friendsOur great local friend group have offered prayers and help.  I’m going to say yes.  I’ve gotten a bit of a start these last few days as the friends who rescued me in the middle of the night, Pam and Michael Burke on the right in the photo, have asked me to stay at their home while Larry is in the hospital.  They’ve insisted on taking care of me.  I’ve said yes.

I hope I can continue to say yes once this crisis has passed.


Certain Questions are Hard to Answer

“How’s Larry?” our neighbors will ask when I’m out walking the dog.  Dog walking first thing in the morning can feel like just another caretaker responsibility when all I want to do is sit and have a quiet cup of coffee, but the dog gets me out and gives me a little exercise and lots of easy connection.  And he’s cute.

I’ve heard caregivers who resent always being asked that question about their loved one because they say no one ever asks about them.  I’ve found people are very empathetic to the stress of my situation and very caring and often ask how I am.  That question I usually know how to answer.

But how’s Larry?  I don’t know how to answer that.  His good day is pretty awful compared to the person asking.

I know they are concerned.  They really want to know.

I have to think.

Well, he didn’t fall in the last few days.  He hasn’t choked.  He’s not dead.  He smiled yesterday.  Ok.  He’s pretty good.  Fine, really.

If I ask him, he might even say fine.  That has always been his standard answer, as long as I’ve known him.  So I’ve developed a way to see the ebbs and flows each day.  I ask him how he is on a scale of one to ten, physically and emotionally.   One is awful.  Ten is really good.  Several years ago he was generally 7’s and 8’s.

The last few mornings he was a 3, once a 2.5.  So is he fine?

He’s telling me he is pretty close to awful.  Twenty-five percent of really good – his really good in his condition, not your really good.  2.5 is pretty awful.

When he’s that low, I ask him why, what are the symptoms that are particularly bothering him.  Mostly he just says all.  He does usually get higher later in the day.

Last night we were sitting outside watching the day turn to night.  He was in his power wheelchair, his feet elevated, with the dog in his lap and a cocktail in his drink holder.  I was curled up on a hair next to him.  Dirty pans sat next to the sink in the kitchen and the counters were a mess.  They could wait.

He had me light a candle.  We watched the clouds turn pink.  We listened to the tree frogs sing and the occasional motorcycle roar in the distance.  As the darkness fell I asked him how he was on a scale of one to ten.  He was a six!  “Cool,” I said.