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.



Love and Strength and Being Present

Original painting with quote you are stronger than you feelToday I read that being fully present with someone who is dying is the ultimate act of love.

We can never know what’s to come, and dying is the ultimate not knowing, for all of us, but most immediately for Larry and me.

He’s said he’s scared when he’s in the midst of gasping for breath, but mostly he seems sad.  But this morning when I got close and looked him in the eyes and asked  if the effort was still worth it, he said yes.  We smiled and kissed.

Joe, the hospice chaplain came for the first time today.  We talked for awhile and at one point he asked Larry what he wanted, and he said “air.”

I was taken sideways, moving from what I thought was going to be a religious answer to what I thought was a physical one.

Joe, however, commented  that in Hebrew the word for air is the same as the word for spirit or spirituality, I think.  (Hospice chaplains are trained in all faiths.)  That the human need for air which Larry knows so intimately better than Joe or I, is like the human need for the greater spirit.

I move from moment to moment, exhausted but unable to sit quietly. I feel so weak but others say I’m strong. Last night was another rough one.  Gurgly breathing, bathroom, transfers to and from the wheelchair, gasping for air, gasping, gasping.  I asked if he was frightened and he said yes.  I am too.

I gave up trying to make anything better and just sat in the bed next to him, holding his hand, doing nothing but being present.  It was finally enough.  He quieted and fell asleep, and eventually I did too.


A Few Good Moments

Original Painting of a palm tree and a blue sky reminding us to enjoy good momentsWe’ve had two good nights and more than a few good moments during the last two days!  Hurray!

The parade of hospice help has been both exhausting and greatly helpful and when they heard how hard our nights were, they were horrified we hadn’t called them.  Who thinks of calling any medical type help at 2 AM?

They sent us an upgraded machine for Larry’s sleep apnea – the problem of stopping breathing as you sleep.  He’s had the condition for four or five years (frequently goes with MSA and Parkinson’s) and has used a CPAP machine which pushes air into his lungs to compensate.   But with the current lung problems and congestion, it hasn’t worked well for him.  The new machine is a BiPAP – which more closely mimics normal breathing.  It’s helped so much he didn’t even need oxygen last night.

The sleep neurologist we saw yesterday said that BiPAP’s are much better for the problem but more expensive so the insurance companies have you try a CPAP first.   If we hadn’t been on hospice, it would have taken sleep studies and multiple office visits to confirm to Medicare he needed one.  But one phone call in the afternoon to the hospice nurse and it was delivered that evening.

Good nights mean better days.  The sky was this gorgeous blue today with big puffy clouds, and the sun created strong shadows in the yard.  We got Larry in the pool, and he and his son had a Hallmark moment playing a bit of catch with a water ball (with me helping with balance).  We even went out for ice cream – orange sherbet and vanilla swirl at an orange grove.

He’s not eating much but he definitely enjoyed the ice cream and he’s still enjoying watching the Red Sox games on TV.  How nice the team is doing so well!

Two children have left for their homes in Seattle and San Francisco, the other leaves tomorrow with his wife for Massachusetts.  They were AWESOME to have around during this crisis time – working as a team to solve every problem for us.  There was lots of laughter and love – many more than a few good moments!  They even did an intervention with me to make sure I got support for myself after they left.  It’s hard for them to leave and hard to have them go!!!

The strange thing is that the few good moments feel so normal, it almost catches my breath. I savor them for what they are!  They lift our spirits and fill the well a bit.  We wish for more.   Hope lingers amidst everything.



We Called In Hospice

Original painting of a waterfall and quiet pools between which represent the emotions of calling in hospiceWe called in hospice yesterday.  Knowing he’s got a terminal disease intellectually and that hospice will be helpful, and making the decision to call in hospice are very far apart on my emotional spectrum.  GGGGHHHHHAAAAA!!!

We left the hospital knowing we’d get the support of home health.  Nurse, CNA to help with showers, physical therapy, speech therapy, occupational therapy.  But it didn’t work.

Within a day of being home he needed oxygen again, any time he fell asleep.  It appears that when asleep his brain isn’t sending the right messages to his diaphragm to breathe deeply.  We had two horrific nights before we realized what was happening.  By then it was Saturday.  An impossible task to get oxygen at home on a Saturday for the first time.  Home health said only solution was to go back to the ER and be admitted.

Everyone kept telling me to get hospice.  More help.  More services at home.  Everyone who had hospice on the Multiple System Atrophy sites said they were glad they did.  Others say they wished they’d done it earlier. It totally makes sense.  So what was my problem making the call?

It felt like giving in on my part?  Like a jinx?  Like it would open the floodgates of grief?  Would it make him give up?

Even if that all were true, what would be wrong with that, at this point, because he’s miserable breathing as he is at night.

So we called in hospice.  More challenges with people who know little about neurodegenerative diseases, especially Multiple System Atrophy.   Things to explain.  Equipment to be delivered.   Thankfully the kids were all around, sometimes sitting with us, sometimes making jokes and dinner in the other room.

I found myself completely impatient with the nurse doing the evaluation for acceptance.  I wanted to be mean.  She was very nice. It wasn’t her.  I felt like I was sliding over the edge of a waterfall into an abyss.

But we got oxygen!  Yet we still had a difficult night as the oxygen didn’t work well with his CPAP machine for his sleep apnea.  At 4 AM this morning, I was holding him in my arms, crying for both of us.

Because we have hospice, another nurse came today and we got a couple of different small pieces of equipment and a morphine prescription which we don’t plan to use yet except if we can’t get him comfortable at night.  It was good to have someone to bring us stuff.  We can and do get better info from doctor friends and colleagues but we can’t get the equipment. Maybe tonight will be better.

It’s surreal to have what is almost a normal afternoon, some quiet time, a swim with the kids. He didn’t get in the pool today but he did yesterday.  Today he just watched from his wheelchair as he read the sports page, then watched a Red Sox game on TV.  This afternoon we had cocktails with friends on the porch.  Ate a lovely dinner a friend brought by.

Is this really happening?

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!

Fear and Exhaustion in the Hospital

Original painting with quote "Fear won't help"Fear and exhaustion in the hospital go hand in hand and this is our 7th day. It’s frightening for us both that he isn’t breathing better.  It’s exhausting for him to find it so hard to breathe and exhausting for me to be sitting at his side, then driving the 25 minutes back and forth, nevermind the emotional toll.

There’s the waiting.  We are still waiting for the results of his urine culture taken Saturday, so they can switch him from a broad spectrum UTI antibiotic to something specific for his type of UTI.

I hate waiting.  I hate not knowing.  I hate seeing him like this.

There’s the frustration and discomfort.  I have finally been able to get them to use his catheters from home. I didn’t think to ask the first few times he complained.  I just told the nurses he liked ours better.  No one suggested we bring them.  Finally I asked and  I kept asking until someone said yes.

They have these rough ones here and we use the hydrophilic catheters at home. They are so much more comfortable for him.   The nurses have never seen them so I’ve showed them how to use them, and they find them much easier, too.  I have a lot of information about them on my resource pages.

We both fear the UTI because any infection is bad in someone with neurodegenerative diseases.  It’s one of the causes of death in MSA.  But the rough breathing is even scarier.

There’s the fear and exhaustion of today and the anticipation of more fear and exhaustion in our future.  It’s one thing to know he’s slowing dying of this degenerative disease, and another to think of him choking to death.  I asked the nurse to put in a call to the pulmonologist, who called me on my cell.   I asked if this was to be expected – that it would take several days to clear.  Or was this the best we could hope for?  Our new normal.

Basically he said this was our new normal.  He  wouldn’t have expected Larry’s lungs to be completely clear because he no longer has the strength to fully clear his own secretions.  But with the Cough Assist machine to help him cough, and the Yankauwer mouth suction (ironic name, huh?) to help remove what he gets  to the top of his throat, we should expect at least more good hours than bad each day.  Those will go home with us, if they can find us the cough assist machine, which appears to be causing problems..

I’m so anxious to get him home, but scared, too.  He’s been here since last Wednesday and he hasn’t done any walking. They have gotten him to a chair and now to his power wheelchair but not even a few steps.  They say he’s too shaky and too weak.  I’m hoping it’s because they don’t know how he walks.  I want to get him up to standing up multiple times a day at least.   But my fear is will I be able to do it alone at home?  At least for 24 hours?  I need my strength.  I can’t allow myself to be in a state of fear and exhaustion.  I need to be ready.

A friend is getting my groceries.  Another friend is picking our kids up at the airport.  Home Health was in and I said yes to everything.

I’m saying yes to any help that’s offered.

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.


Lessons from our Hospital Stay

I’m sitting at my husband’s hospital bedside thinking about what I’ve learned here, the lessons from our hospital stay.  Lessons about advocacy, about asking lots of questions, about being the expert on his care.  And the lessons from our hospital stay that I learned about taking care of myself, or at least the penalties for not caring for myself. We are here after deciding to see a pulmonologist, because while waiting for the scheduled visit to the his gurgly breathing got worse so Larry decided he wanted to go to the ER.


First is to be a loud but polite advocate.  I learned this lesson years ago from my mom’s hospital stays but somehow had to relearn it.  This is especially true with unusual diseases.   You are the expert, though you are in an environment of experts on other things.

I asked each clinician “are you familiar with Multiple System Atrophy because I know it is a very rare disease.”  Most said no, which enabled me to fill them in.  I felt free to share solutions I had read about on the Multiple System Atrophy blogs.

He came in for gurgly breathing.  I had read about a patient saying that a Respironics Cough Assist T70 machine was extremely helpful so I kept asking for one until it arrived in the room.  I had read that suction was effective, which they did, both deep suction through his nose into his lungs (which he hated) and shallow suction like at the dentist’s office.

With each clinician seeing him, I kept asking “what else can we do?”

When the pulmonologist finished sharing his treatment plan, I asked “what else can we do” and after a moment of thought he said “well, we could try a scopolomine patch to try up some of the fluids.”  I jumped on that, saying I had read on the blogs that that was helpful to some patients.

I asked for physical therapy to get him up often and confirmed with the pulmonologist that it was important.

There were glitches that occurred during handoffs from one floor to another and one shift to another.   Particularly around how often he was catheterized and how often he was clean up (washed and teeth brushed, etc.) So I asked that these things get taken care of more frequently.  I only had him to think about.  They had many people to think about.  I was the expert on him and his care.

Lessons from the Hospital for CAREGIVER CARE

I learned my own lessons from our hospital stay the hard way.  I was so busy making sure Larry got what he needed that I ignored what I needed and ended up falling apart.


My fear about his condition made me stay too late and come in too early, thus giving myself only a few hours sleep.  My body started to throb with fatigue.  The next night he seemed so distressed and there was an open bed in his room that they offered me so I said I’d stay, but couldn’t fall asleep.


I wasn’t particularly hungry or thirsty and didn’t want to leave him to buy food, especially after some early glitches after the transfer from the ER to the observation floor.  I munched on a few leftovers from his plate, and some peanut butter and crackers the nurses gave me.  That was it for two days.  I sipped a bit of ginger ale and drank some coffee.

My lesson from this lack of self-care came in the form of a melt-down at 2AM.  A kind nurse sat with me as I cried and then threw up.  I finally decided I needed some help (duh!) and some sleep (duh!) and called two dear friends to come get me.  Good thing they answer their phone at 2AM.

My takeaway lesson for myself from our hospital stay:  you can’t be an effective caretaker to someone else or manage your own emotions during times of stress when you aren’t taking care of yourself.  That would seem obvious.  It is obvious.  But not when you are in a state of agitation and completely focused on someone else.

I’m getting lots of recriminations from my friends and family.  I’ve learned my lessons, at least for now.



Making the Right Care Choice is Agony

Original Painting of Vines and Quote "We Can't Control What Comes," showing the challenge of a care choiceWe are struggling to make an appropriate care choice for Larry’s labored breathing.  He say it feels like he’s choking.  It sounds like he’s drowning.  It’s painful to us both.

I feel the same visceral agitation I felt when my kids were young and crying and I couldn’t find a way to sooth them.

I feel such a physical sense of adrenalin pushing me to action. I’m sure it’s important to the human race for us to have an automatically triggered response to kids crying (and people choking) – otherwise, the human race would die off.  But it’s exhausting to feel that way day after day. I feel so helpless.

So I keep pushing toward more action and agonizing over the right action.  Specialist?  Emergency Room?  Hospice?

After trying the primary care doc, getting a referral to a pulmonologist, then finding we had to wait three weeks to see him, my body started to panic.

I had even less resilience because I was also experiencing technology frustrations from a phone that fell in the toilet.  The touch screen would only react to one out of every three or four touches. Yes, it is kind of funny in a sick sort of way.  My phone is drowning and my husband sounds like he’s drowning.

My mind went into overdrive.  Fix the phone.  Fix my husband’s breathing.  What to do?  Who to call?  What if we did this?  What would happen if we did that?   What’s the right choice here? I wanted some minimal level of control somewhere.

If it were possible, smoke would have been puffing from my ears with all the gears in my head spinning and grinding at warp speed, and an MRI of my brain would have looked like a jungle of twisted vines.

In that moment, the specialist called back.   We could be seen on Thursday.  Momentary relief.  A care choice had been made.  Then I thought of two more days of this, and worse, two more nights without sleep.

I went back to whirling through other care choices.  What about the ER?  Hospice?

In a moment of relative calm, when my husband’s breathing was softer, I took a deep breath and remembered my coaching advice to my clients.

I’ve told leaders who are struggling with a decision that there is no way they can know absolutely what the right choice is.  Just gather as much information as you can, make your best guess, take appropriate action to maximize success, continue to monitor the environment and be prepared to change course if something changs.

I recognized that each care choice was reasonable.  The specialist looked like the best first step.  I also made an appointment for an informational interview with hospice for next week, after we see the specialist and see whether any intervention he might suggest has a positive benefit.

I decided that if the night was too unbearable we would go to the ER and enlisted the help of a friend willing to go with us if we needed to go in the middle of the night.

I thought about what we wanted to say to the specialist about our desired outcome.  Multiple System Atrophy is a rare disease.  He may not have seen it.  I want him to know that we are looking for symptom relief for Larry’s breathing, not a cause or a cure.

I even found some help for my phone.  I had no rice to bury it in (a suggested solution for a damp phone.) I tried popcorn kernels.  Didn’t help.  I bought Damp Rid, a product used to take dampness out of the air in basements and mobile homes.  I buried my phone in it for hours and it’s working!!!  I can only hear if the phone’s on speaker but the touch screen works and it smells nice.

I am calmer.  I know we have no way of knowing the best care choice, so I don’t have to worry about doing the wrong thing.  I can’t control what comes, just pay attention, and make the best next care choice.


Best Caregiver Coping Strategies

I just read that all caregiver coping strategies aren’t equal.

In Every Victory Counts, a free manual for living well with Parkinson’s Disease that  has info that applies for MSA and other neurological diseases, a section on caregivers talks about the emotional impacts of caregiving on the partner.

Apparently there are two major categories of caregiver coping strategies, and based on our personality and the level of stress, we default to one or the other – either emotion- based coping or problem solving coping.

Caregiver emotion-based strategies are things like avoidance (not so successful), meditation, religion, etc – things to help with the emotions.

Caregiver problem-based strategies are things like seeking opinions from multiple providers, searching for complementary therapies, focusing on managing the disease symptoms.

According to studies, problem based coping leads to lower levels of distress in situations involving chronic disease.

I think I do both, and personally think both are necessary.

The emotional strategies help you manage the stress so you can stay present and think.  The problem strategies give you some sense of relief because they are action based and you at least feel like you can control the actions you take, if not the disease.

So today we are taking action.  I’ve made an appointment with the primary care doc about Larry’s breathing, which I wrote about yesterday and has continued to be a challenge.  I’ve recorded about twenty seconds of his labored breathing on my phone so that if, as seems to happen, the symptom doesn’t show up in the doctor’s office, I can play it for him to hear.

We’ll see what happens.