Eighteen Caregiving Skills I Can Use on Me!

Original pastel of finding clarity of using my skills on meIt occurred to me this morning that I have all these well-developed caregiving skills.   I had previously identified specific parts of caregiver recovery but I didn’t have any clear picture of how to recover.  Now I’m wondering if

Pastel beginning - finding out how to go forward
This is how I started the pastel above – form but no detail.

part of the process is being intentional about using these skills on me?  I’m alone.  I need care in this difficult time, just like Larry needed care in his difficult time.  So I came up with a list of competencies I developed while caring for Larry.  This gave me more detail to create a better picture of caregiver recovery.  I can use my caregiving skills on me!

  1. Be patient with slowness and disability:   Allow myself plenty of time to do nothing and just move slowly through the day.
  2. Pay close attention to health:  Catch up on doctor appointments, eat healthy, get exercise (I’ve joined a hula hoop class)
  3. Accept help that’s offered and also ask for help:  I asked a neighbor to drive me to the airport because I just didn’t feel like going it alone with Uber.
  4. Notice and mitigate symptoms:  one symptom I’m working on is my tense jaw, neck, and shoulders.  I’m trying to  just notice how often my teeth are clenched – seems like every time I think to pay attention. Plus I had a massage this week.
  5. Find fun activities that are manageable:  I can’t handle big gatherings yet but I go to dinner with a neighbor when invited, take beach walks, ride my bike for a few minutes, and practice my hula to music.
  6. Search for ways to find comfort:  I read happy novels, use nice coffee mugs, notice nature , hug the dog, take long hot showers, get massages or pedicures to feel the comfort of touch, and wear comfortable clothes that make me feel good.
  7. Use trial and error:  when something doesn’t work I try something else.
  8. Right-size expectations: I’m leaving a lot of things undone, especially things I don’t like to do.
  9. Know I can’t multi-task right now.
  10. Be strong or gentle with myself as necessary.  Know that both are possible.
  11. Accept that crankiness and fatigue is part of the journey but don’t allow myself to get stuck in it.
  12. Choose who I spend time with according to whose energy feels good to be with.  Larry and I never chose to spend time with people who offered pity rather than empathy.
  13. Remember that whatever is today will be different tomorrow.
  14. Heighten my awareness of my needs and wants:  I was great at this with Larry and it takes enormous work to do this for myself.
  15. Attend to spiritual needs:  prayer, meditation, ritual. Last week I tried a singing bowl meditation and this week went to hear a Buddhist monk.
  16. Try to stay upbeat and generally optimistic.
  17. Keep a sense of humor:  Alexa, tell me a joke!
  18. Find ways to stay in the ongoing stream of life: Keep living, whether I feel like getting out of bed or not.   Don’t let myself get isolated or focused only on my grief.

I’m going to print this list out and read it on a regular basis.  I have great confidence that these are skills and behaviors that I am good at, with which I have a lot of experience.  Now I can use my caregiving skills on me, and hopefully be as good at it as I was for Larry!




Caregiver Recovery versus Bereavement

Dark sunset painting of the weight of caregiver recoveryI’ve been musing on the process that is caregiver recovery versus bereavement.  Somehow it seemed important to me to separate the two even though there is much overlap.

Take meals for example.  My whole pattern has been disrupted.  Larry’s death means taking out just one set of silverware, one placemat.  I don’t like to eat at the table anymore so where do I eat?  Should I bother to use the dishwasher?

The caregiver recovery part is remembering that I can prepare and eat foods of any texture.  I internalized choosing foods that he could eat so I have a hard time remembering I can eat anything, like rice, for example.  Just like I couldn’t remember it was ok to leave the house at first because I was so used to not wanting to leave him alone.

The biggest change for me is getting used to calm.    No crises, no drama, no emergencies, no adrenalin. I know I don’t have to be on high alert constantly, but my body is anyway.  My shoulders are constantly knotted, hunched, prepared for the next blow.  My belly is still tight, my breathing shallow.  I wake in a sweat, wondering what’s happened I need to deal with.  I carry a nagging dark shadow of worry that I’m not taking care of things.  I have the rushing symptoms of panic attacks at the oddest times.  Some maybe not so odd – like in a doctor’s waiting room for a recent physical.  PTCD – Post Traumatic Caregiver Disorder!

My relationship to time has changed.  Nothing’s urgent.  No problem needs solving ASAP.  If nothing’s urgent, why bother?  Measurements of time have changed, too.  The days and hours used to tick off to the metronome of CNA and nurse visits, breathing treatments and  pill schedules.  Now they ooze out with no structure.

There’s my relationship to the future.  When you live with a progressive degenerative disease, you have to stay in the present.  The present is the best you’ve got!  You can’t plan for the future because the future is completely unknown, in length and in possibilities, filled with things to dread.  Now I’d like to think the present isn’t the best I’ve got.  But my dread of the future is another dark shadow of habit.  And I’ve forgotten how to plan.

I am no longer needed.  No one needs me!  I have no purpose!  My days stretch out with emptiness.  Loneliness, too – but that’s part of the grieving.  Filling the emptiness is part of caregiver recovery versus bereavement. After all, I was abruptly fired from my job.  Sure there were parts of the job I didn’t like, but I really liked my boss – or my co-worker, depending.  In my case, I gave up my consulting practice two years ago for this caregiver job.  Now I have neither job.

The sounds of the house are different, particularly at night.  Yes, I have had to get used to sleeping alone.  But sleeping with quiet is part of caregiver recovery versus bereavement.  There’s no oxygen machine, rhythmically pumping, sort of like a heartbeat.  There’s no CPAP machine, with it’s own rhythm.  The sounds of the day are different too.  I don’t watch much TV, and especially this season, Larry always had sports on, because it was something he could do that he enjoyed doing.  Especially his beloved Red Sox games.  I can’t listen to noises of the game (but that’s because of grief).

Finally, it’s making decisions without the benchmark of the disease.  What house, what climate will work for Larry?  What can Larry do at this stage?  Where can Larry go with his lack of balance, his walker, his wheelchair?   What car is best for this stage of the disease?  I am now parameter-less.  Yes I have unknown freedom. Yes, I have more choice.  But I have no experience of living this way.  I’ve put my own wants and needs aside for so long I’ve forgotten how to have them, never mind how to act on them.

So now that I’ve made this list of what I’m experiencing that’s part of caregiver recovery versus bereavement, what do I do with it?  How do I actually go about recovering?

PS – What runs underneath everything is the need to recover from the residual physical, mental and emotional exhaustion.   Sleepless nights, hospital visits, choking episodes healthcare system failures.  But worst of all, day after day after day, watching your loved one suffer the progress of the disease – the indignities, the ugliness, the messiness, the incapacity.  Death by 1000 little cuts, as they say, for both of us.






Dreams, Weights, and Measures of Grief

Original pastel of Larry walking away on a beachThis morning, I woke early from a dream thinking Larry’s warm back was pressing against mine.  I’ve dreamed that we’ve been trying to get into places together and had the wrong keys, and that we were going out together and my clothes didn’t fit.  These dreams are heavy weights as I wake up and measure my grief.

Clearly my sleeping brain is trying to make sense of his death, which my awake brain can’t really do.  This morning’s dream was particularly weighty as it was such a visceral reminder of all I’ve lost, damn it!

Some mornings I don’t want to get up and face the day.   Other mornings, I have to get up and get away as fast as possible from the bed and my thoughts.  This morning was one of the latter.  I went to the beach after walking the dog.

I’ve graduated from the MSA Caregivers discussion group online to the MSA Widow/er group.   Lucky me.  It’s hard to read about grief stretching out seemingly endlessly in front of me.  Six weeks for me. A measure of time that I guess is meaningless.   It’s been 1 year, 2 years, 4 years, even 6 years for others still dealing with grief.  I asked what people have done that helped.  I got good answers:

    • establish a new routine
    • journal
    • exercise
    • meditate
    • grief counseling or groups
    • get a dog
    • prepare for holidays, anniversaries, etc.

Ok, I’m doing all that and it hasn’t made me feel better.  Takes time, you say?  I’m just tired of having life be hard.  I’ve had years of hard.  I don’t want to do hard anymore.  Can’t you just wave a magic wand and make the next 6-12 months go by?

But as I write that, I don’t really want it to happen.  There’s something about the grief that for now keeps me connected with Larry in an intimate way.  Something about it that honors him, honors our love for each other.  Something I have to do.  Not that I want to get stuck in it.  NO! NO!  NO!

I try to keep reminding myself of what in me will serve me well.  Measures and indicators of future success surviving grief.

I have learned how to live with polarities – we figured out how to live well and enjoy life while Larry was dying.  So, too, will I be able to figure out how to feel both grief and joy.

I’ve reinvented myself before, through many career directions changes, as a single mom after my divorce, as a caregiver relocated to a new state without family nearby.  I have skills to re-reinvent myself now.

I’m generally a happy person and, through Larry, have learned to accept whatever comes and make the best of it.

I have lots of interests that I haven’t had a lot of time for.  I’ve been painting and trying pastels for the first time.  I’ve enjoyed that.  I got new middle distance glasses so I could read my piano music.  They arrived yesterday and I sat down to play.  That didn’t work so well as I was weighed down with thinking of how much Larry enjoyed hearing me play over the years, thinking of him sitting in the room with me just listening.  I played 2 pieces and then couldn’t stop the tears, which turned into an ocean of grief.  But just as I learned how to sleep in our bedroom again, I will learn how to play without him.  Maybe not today, but sometime.  When I’m ready.

I have lots of good memories, and no regrets about the past, just regrets we don’t get to enjoy a future together.  I can’t help but feel lucky for the almost 23 years of marriage we did have, for our love story together.

So my brain will continue to dream as it works through this. I will measure the days, weeks, and months since 9:02 PM April 2, 2019. I will feel the weight of losing him in my life.  These dreams, weights, and measures will not stop me from feeling joy again, moments of it now, hopefully growing more frequent in the future.





A Month of Grief

Today, after a month of grief, I have no words of my own.  Only words of others.

From Healing After Loss by Martha Hickman, a book of daily readings a friend sent me who lost her husband 1 year and 3 months ago:

“‘The problem with death is absence.’ – Roger Rosenblatt

After all our attempts to comfort ourselves and to make sense out of dying, we are left with a huge hole in the fabric of our lives  – ‘I miss you. I miss you. I miss you.”  And then what?…

[there is] perpetual danger of falling into the astonishing abyss of the person’s death…

Perhaps they become our guardian angels, our link with the other side.  But to let them go initially is one of the compromises we are forced to make with life, and our longing for them sometimes makes the prospect of our own death almost right.”

And from a poem my daughter sent me in the last hours of Larry’s life:

from Funeral Blues, by W. H. Auden

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

How Grief is Impacting My Brain

These thistle were in Larry's funeral arrangement from the family
Thistle from one of the flower arrangements at Larry’s funeral*

It’s four weeks today since Larry died.  I hate writing that because it feels like time is a river rushing me away from him.  STOP!   Bring him back! Is it possible he’s truly gone?  He was here, smiling, chuckling, warm and cozy. The incomprehensibility of the loss hurts –  even more now than at first.  It hurts physically.  It hurts mentally.  So much so that I looked to make some sense of it and Googled how grief is impacting my brain.

I have trouble making decisions, even little ones.  I have trouble remembering things.  My brain feels like a hairball – all tangled and messy.  I am exhausted, but not sleepy. I wake up not knowing what day it is.

My normal filters of what I say and how I react are warped.  I feel overwhelmed by how much there is to do, and how little there is to do. I don’t know what to do next.  Though I’m lonely I need to be alone more than I’d expect. Being with people takes so much energy – talking, understanding, looking interested, answering questions.  I’m in a gray fog:  grief brain, not depression.

What I read about how my brain is being impacted by grief made sense.  That death is incomprehensible to us.  We struggle to process it.  We use up reserves.  We use up the glucose our brain needs to function, just like our muscles.  It makes no sense to us intellectually so we process it physically.  Our heads hurt.  Our bodies hurt.  Our energy is depleted.  A concussion of emotion. Just like concussions that don’t necessarily show on an MRI, the body, the physical brain, still needs time to heal to function properly.  In fact, one neurologist, in her book Before and After Loss: A Neurologist’s Perspective on Loss, Grief and Our Brain  , is calling for a definition of “emotional traumatic brain injury.”

Research shows that  grief frequently leads to changes in the endocrine, immune, autonomic, nervous, and cardiovascular systems; all of these are fundamentally influenced by brain function and neurotransmitters.  Rates of heart attacks and car accidents are elevated for people who are grieving.

Another article reported “that several regions of the brain play a role in emotion, including areas within the limbic system and pre-frontal cortex. These involve emotional regulation, memory, multi-tasking, organization and learning. When you’re grieving, a flood of neurochemicals and hormones dance around in your head. ‘There can be a disruption in hormones that results in specific symptoms, such as disturbed sleep, loss of appetite, fatigue and anxiety,’ says Dr. Jannel Phillips,”  a neuropsychologist at Henry Ford Health System.

It’s helpful to know all that.  It’s reassuring, in a way, to know my brain isn’t going to function well because it’s busy grieving.  I should lower my expectations.

I should drive really carefully, or not at all.   I should postpone decisions where possible.  Everyone keeps asking me whether I’m going to stay living where I am.  Who knows?  Don’t ask me.  Am I going to move west to be near two of my children?  I don’t know – don’t ask me.

I tried to buy a car to replace our wheelchair van this past weekend.  I didn’t want to buy a car without Larry.  A car for one.  My brother and his wife were trying so hard to help me but I couldn’t tell one car from another – couldn’t remember the details of each.  Felt overwhelmed and exhausted.  The pressure to make a decision when nothing made sense felt increasingly heavy.  What do I do?  Suddenly, yesterday, I realized I could keep driving the wheelchair van until I’m ready.  Maybe the decision will get easier as my brain heals.

I am grieving not only the death of my husband, the loss of my soul mate, but also the end of my caregiving, the years of having to be strong every minute of every day.  It is blindingly exhausting, confusing, draining, painful.  No wonder the grief is impacting my brain.  I need time, lots of time, to heal.  To let my brain heal. It’s exhausting to think about.

  • The thistle connotes endurance and fortitude, as well as bravery, courage, and loyalty.  It is said you should wear a thistle whenever the stage of your life seems overwhelming.




Why Funeral and Mourning Rituals Matter

I have buried my husband.  We celebrated formally, as he requested.  We euologized him, for the incredible loving man he was: the husband, the father, the friend.  As mourners, we accompanied him to the York cemetery and a lone bagpiper played as the sun shone down on us.   As mourners, we broke bread together.  As mourners we drank together.  As mourners we remembered him, and laughed and cried.   Funeral and mourning rituals matter to me in a way I never understood before.

Funeral wreaths on our door signify that this house is in mourning
Black wreaths made by our dear friend Joan signify that this house is in mourning.

Now, as a widow in mourning, I have returned home alone.  After being with family constantly since he died eighteen days ago, I have come home alone to our house.  I have eaten my first meal alone.  I have slept in our bed alone.   There are black wreaths on our front doors, and in some ways I wish I could wear black all the time.  But what would it mean today?

Victorian grief cultures of mourning were structured and intense with black symbolic of spiritual darkness.  Now black is just a stylish color.

Widows wore their black “widow’s weeds” for life in some parts of Europe.  I remember living in the Italian neighborhood of Silver Lake while I went to White Plains High School.  I would see the grandmothers walking with their black skirts, black blouses, and black scarves covering their heads.  I knew they were widows.

I remember reading Victorian novels where the widow would remove herself from public or social activities, and would graduate from heavy black to gray then lavender clothing as her loss receded and she moved into half mourning.  People knew.

I took the dog for a walk at sunset yesterday, purposely avoiding the park where people gather.  But one of the neighbors that I know only slightly pulled his car over and said hello.   He asked “what’s new?”  I just shrugged.  If I had said anything, I would have started to cry.  If we had a culture of mourning and I were wearing black he wouldn’t have stopped.  He wouldn’t have asked.  He would have known.

In the past there were mourning rituals which acknowledged that death impacted family members differently according to their relationships.  Mourning customs for a widow were from four years to at least a year and a day, parents or children of the deceased were encouraged to spend six months, and grandparents and siblings were to spend three months in morning. Other family members should spend thirty days in mourning.

The hairdresser doing my hair several days before the funeral told me she knew what I was going through because her grandmother had just died.  I nodded and said appropriate things but I wanted to yell “that’s not the same at all!!!”

Our culture today encourages us to “get on with life.”  “Go back to work.”  “Keep busy.”  We, the mourners, are not expected to acknowledge our loss  in a public way once the funeral is over.  In fact, if we do, it can make some people uncomfortable.  We don’t even allow ourselves to appreciate the significance of the loss, perhaps because it’s so incomprehensible.  But also because we don’t have the ongoing ritual of mourning.

I’m not wearing black today, but my heart, my body, my soul – they are in spiritual darkness.   The black wreaths on my door are my public acknowledgement that funeral and mourning rituals matter.





Today is Your Funeral

Photo of Larry just 6 months ago
Larry out to dinner, October 5, 2018

It’s a surreal feeling – today is your funeral, Larry. We’re all here to say goodbye.

It’s been gray and cold here in York, Maine, raining this morning – and matching my mood.   The sun is supposed to shine for your graveside service.  It would be nice if you could arrange that, please.

I’ve been wandering between tasks and tears.  Although it’s a rather gross simile, grief feels like nausea to me.  It’s constantly there. I try to breathe carefully and push it away, then without warning it takes over and I sob.  There’s a moment or two of relief, then the same horrid feeling returns.

It was so hard to leave our house yesterday morning to fly up here.  You were everywhere I looked and I just felt you wouldn’t be there when I came back, that I was leaving you behind in my life.  I know you’ll always be in my heart but I wish with all my heart you were still in my life.

People told me I would feel some level of relief when you died, to be done with the caregiving.  I feel NO relief.  Just grief.

Today is your funeral. We will cry today – my waterproof mascara probably won’t last through the flood.  We will laugh today.  We will celebrate you.

You’d love the laughter. Just know that the tears are the salty evidence of our love.

So Hard to Say Goodbye

Original painting of softball glove -
Oil painting of Larry’s old softball glove

Larry died at 9:02 last night, April 2, 2019.   He was finally ready, but it was so hard to let him go, so hard to say goodbye.

His pain is gone, but the pain of loss is in every cell of my body.

Yesterday, he was with us and responding at 3 pm, surprising us all by saying goodbye to the CNA.  He nodded his head when I asked if he loved Cody, again when I  asked if he loved me, then nodding again when I asked if he thought I was beautiful.  Hey, why not go for it?

My daughter and her husband sent beautiful messages of love and admiration which I read aloud to him.  He was able to nod when I asked if he had heard them.  My son called and told Larry he loved him on speaker phone.   Cody read him Bible verses.  I read from a book he used to read to me at night – a list of 10,000 things to love in the world, like morning dew, and ball games,  and fireflies.

At five o’clock things started to change.  Instead of days, we knew we had hours.  We cancelled with dear friends who were coming to cook us dinner.

His son Cody and I sat at his side, holding his hands, crying and making jokes. We continually were in awe that Cody, who lives a busy life on Cape Cod, was with us for this moment, for this final transition.

This is my third death bedside watch, Cody’s first.  And the most intimate and irreverent.  He would have loved it.  I hope he did love it.

By 7, after canceling friends who were coming to cook us dinner, we were guilty to admit to each other we were hungry.  I didn’t want to leave him for more than a minute so I ran to the kitchen, grabbed a few beers, and some cheese, and fruit, and chips and guacamole.  We had a “deathbed picnic,” toasting him lying on the bed and passed the guac back and forth over him.  He would have loved it!

By 8 we thought he’d left us but after a long silence – his head relaxed against the pillow and his breathing stopped.  We started to cry with our foreheads against his.  All we heard was our tears.

Then…  he drew in a loud breath, scaring the heck out of both of us and started breathing regularly again.  Really, Larry?  Just like when he’d hide around a corner and jump out at me.

He did that repeatedly until finally Cody said, “I wonder if maybe they just don’t have his room ready so they keep sending him back.”  We got a good laugh out of that.

Cody sang a song to him called “Nobody Knows.”  The first line is ‘nobody knows how to say goodbye.’  Oh, &^^%%!

We felt all the love coming from all over the country, like those airport flight tracking maps with all the red lines of love joining in Osprey Florida.  And yet it was perfect that it was just the three of us in the room, no healthcare workers, no strangers.

Finally, at 9:02 he was quiet.

I didn’t know how hard it would be to say goodbye.  We had told him we loved him so many times over these last days.  We’d told him the wishes of love that so many others had sent.  What more was there to say?

October 5, 2018
October 5, 2018

Larry, you showed us how to live.  You showed us how to laugh. You showed us how to live and laugh while dying.  You were always you.  As Sam said  “you were just a good person all the way through.”  You were an incredible partner, an incredible parent, “which will forever be a gold standard for me,” said Krista.

You fed us great food, you made us happy.

You loved well.  You were loved.  You will always be in our hearts.

That’s why it’s just so damn hard to say goodbye.


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.




Dying is a Pisser

There are not enough tears so why bother to cry! I was reading a book called Being With Dying and the author quoted a dying person as saying “It’s not death that’s hard, it’s the dying that’s a pisser.”  Oh, yeah.

The last few days have been the worst.  He hadn’t pooped in many days but had hardly eaten and had no discomfort.   At first I wasn’t worried, but just in case, I asked the hospice nurse just to check him out Friday morning at 9 am.  I so wish I hadn’t!!!!!

That check resulted in an enema that just hasn’t stopped giving.  The nurse left at 10 am saying it might take til the afternoon.  HA!  Today, 53 hours later, we are still in a “go” mode.  He’s spent his first days stuck in bed, mostly half or fully asleep, so very weak.  In retrospect, this was too aggressive to do to an MSA patient.

Thankfully, his son Cody arrived Friday.  I couldn’t have done it alone.  The worse was not the messiness but the pain Larry was experiencing – stomach cramping, pressure sores being cleaned over and over.  His face was in a grimace, the cords of his neck standing out rigidly.

And yet, because it’s Larry, there were still funny moments.  When Cody and I did something incompetently in the midst of helping him and Larry snickered quietly.  Or when we decided he really needed a shower but we couldn’t make it happen, and I suggested we strap him face down to the roof of the wheelchair van and take him through a car wash.  Cody even promised we’d find a “Gentle Touch” carwash.   Larry managed to raise his eyebrows.

Cody has a light moment as we care for Larry Then last night as we sat waiting for him to finish his breathing treatment and clean him for the last time before we went to bed, Cody started exploring the Hoyer lift that hospice had delivered.  I showed him how it’s supposed to be used and why it didn’t work for us on a carpeted floor and with Larry being so tall.  Cody decided to try it for himself.

In he climbed, and up and down he went.  Rides at Disney, right?

Cody entertains us on the Hoyer Lift.This all sure feels like one of those rides I have always hated that make your stomach drop out.

And yet, when I can pause and stop doing, stop problem solving, I am able to bring more open-heartedness.

This morning I was reading a quote by Lao Tsu about the value of emptying your head, of non-doing.  The doing is the benefit, the being is what matters.

Someone said wiping his ass is CNA work, not a job for a family member.  That may be true.  And yet sometimes, just maybe it is an act of love.  Thankfully, our CNA is as caring and gentle as a family member.  Certainly more skilled.  We’re learning from her how to help Larry better.

There is a messiness to all of life we like to forget, prefer to avoid.  We like it neat and tidy, without pain.  Coming into the world is a messy painful process.  I guess going out of it is too.Dying is a pisser.  And there’s a lot of messiness and pain throughout life, if we are really present to it.

I don’t know if this is Larry’s time to go.  Or if he will revive and we will go through this again.  I do know there is something for me to learn here.

I do know that I am a part of him and he is a part of me, and a part of many others in this world, who’ve known him, loved him, admired his grace and fortitude throughout his life and throughout this process.   When his body goes, today, tomorow, next week, next year – whenever,  he will still be within us, within our hearts.

I just have to stay open and be present.