Open Letter to Hospices

Dear Hospice Leadership:

Original painting of Thistle Flowers
The thistle connotes endurance and fortitude, as well as bravery, courage, and loyalty. It is said you should wear
thistle whenever the stage of your life seems over-whelming. These thistle were at Larry’s funeral.

You care for people at their most vulnerable time, but mostly your care is for a very brief time. Tidewell Hospice here in Sarasota quotes the average length of stay as 14 days.  When we were admitted that’s about how long we thought we’d be with you.  But instead we were in for the long haul.  Six months before you discharged us.  About 3 weeks out.  Then maybe 3 more weeks back under your care.

In our situation with a progressive neurological disease, once the precipitating symptom to contact you was brought under control, the disease still progressed but it was a time you should have started to treat us differently.  We were no longer on a precipice, but on an unknown and significant decline.  But different from cancer!

You could have been so much more help if you had recognized we didn’t fit your norm.  Please, please do it differently for others.

It could have started when you first admitted us and made such a big deal about hospice care not being curative and did we understand that.  You didn’t understand that this disease diagnosis came with the words “no cure – terminal.”  This was not a transition for us.

You should have started our care by doing the research to understand the disease.  We wished for clear guidance about the disease course and what to expect from you as symptoms progressed over time.    Instead, we had to do the research and provide it to you, and often you ignored it.  You need to listen to patient and caregiver knowledge and amass your own knowledge even if just on an as-needed basis.    You should have encouraged us to keep our neurologist involved.

You need to educate yourself about typical causes of death for this particular disease.  We didn’t look like cancer, but you looked at us the same.  You didn’t track the appropriate measures of decline for his disease, which ultimately led to you discharging us and causing us a horrific last few months.  You should have told us what you were tracking, especially as the nurses spent so much time doing it in our presence.  We could have told you it didn’t apply.

Your must understand which drugs that can’t be used for this disease, and which drugs only work for this disease’s symptoms.  For example, you refused to supply the only constipation med that had worked for Larry in spite of us explaining the significance of constipation in MSA quality of life.  You insisted we use your formulary, in spite of the fact that he had tried those drugs and they hadn’t worked.  EVER.

You should make sure to set more appropriate patient and caregiver expectations about roles of each of the hospice team members including how often a doctor or other provider will be involved and under what cirucumstances.  Do this again after the initial crisis has passed.  Your people kept telling us we would be getting all the “good stuff now,” like massages.  That happened twice in 7 months.  And doctors – never.  We went from making the rounds of many specialists regularly all for symptom control to never seeing a doctor or PA or NP in the whole time we were with you.

Provide appropriate and timely answers to questions about symptoms that have to be brought by the nurse to the doctor we never saw.  We were used to getting immediate answers when we sat with the doctor instead of addressing them to the nurse who might or might not remember to bring back answers on her next visit in a week or two.

Instead of wanting to manage his autonomic symptoms that were impacting his quality of life, you only wanted to manage the pain.  And you only seemed to want to manage it pharmaceutically, instead of with other measures.  Instead of the equipment your physical therapist recommended for managing pressure sores, you offered pain meds.

You should have educated us on how to prevent or mitigate new symptoms that might be expected as symptoms progressed.  Having no experience with pressure sores, we didn’t recognize them as Larry’s mobility declined.  There were things we could have done earlier to prevent them.  You pretty much ignored them until they were horrific.  “That happens,” you said.  But he wasn’t even bed bound!

Communicate clearly, empathetically, and honestly.  Make sure your phone system works exceptionally well and doesn’t require much effort or time to get to someone who knows me or at least can access my situation.  How come my hairdresser can answer my calls with my name but you can’t find me?

Ask your staff to think about where the patient and caregiver might be emotionally and/or physically before they make a phone call or a visit.  Too often we were bombarded with something that didn’t fit – whether it was insistence on their schedule and not ours – like coming early in the day before he was awake – or emotions that didn’t meet ours.  Don’t bring false cheeriness or false sadness.  Look where we are.

Prepare us for changes.  You discharged us with no face-to-face, no warning, and no help to replace your care.  I know from my healthcare experience that transitions of care are always hard, and I’ve seen them botched many times.  But I’ve never completely experienced such trauma.

Because of the lack of palliative care services, once we were discharged we had no where to get coordinated help.  We made the rounds of individual specialists again.  And because Medicare required all the qualifying tests to be passed to replace medical equipment that had been provided through hospice, we had to jump through hoops and more hoops, when we were in such a precarious state, emotionally and physically.

So if you have to discharge someone with a progressive neurological disease, give them plenty of warning.  Understand what a traumatic event this will be, what a disruption to their lives, and figure out ways to minimize that disruption for them.  Don’t tell them it’s “good news.”  Give them (not just a fax to the primary care doc) written instructions on how to transition the care.  Help them emotionally while they are still under your care because there’s no one there to help them once they are discharged.

The most precious resource you provided us was a CNA to help with showers.  Probably the lowest paid person in the place.  Treat them well.

This is already too long for you to read, and too upsetting for me to write.

I wish hospice wasn’t our only choice.  I wish coordinated care didn’t have to come with a die-in-6-months time frame.  I wish you’d listen to me and make changes!

 

 

 

 

 

Caregiver in Suspended Animation

Original painting of Blue Heron in suspended animation in the reedsI’ve been feeling off since we returned from vacation – in sort of suspended animation.  I can’t seem to recapture my resilience.

We had the breathing crisis in August which felt like the end for awhile.  Then the move into hospice, which also felt like the end.   My anxiety was high.  I was in action.

Then the recovery of some strength and better breathing and almost back to pre-crisis (except for random episodes of weird symptoms).  Then things seemed stable enough for me to manage alone with him, and to plan the vacation.  Then vacation (with it’s own mini-crises).  Lots of action.

Now we’re back, but where are we?  Are we near the end?  We’re still under hospice care.

Are we proceeding with our lives?  We went to a Selby Gardens outdoor concert last Sunday and to the beach for sunset on Thursday.

I asked Larry if he thought being in hospice was a psychological disadvantage that outweighs the benefits?  After all, they know nothing about his disease.  They’re good with the equipment we asked for, good with sending meds, good for the CNA help.  But medically they just shake their heads when I mention a weird symptom.  So does being in hospice make us feel closer to death?

He said “No, all positive.”

In some ways, I just feel like I’m always waiting.  Like now.  Waiting for him to wake up so I can help him.  Then I’ll wait for him to finish on the toilet so I can help him.  Then I’ll wait for him to finish eating breakfast so I can help him with his breathing treatments.  And always waiting for the next shoe to drop.  I can’t wait for him to get better.  I don’t want to wait for him to get worse.  I can’t do anything about any of it.  I’m in suspended animation.

I know, I know.  I need to stay in the present.  Right now I’m just finding it hard.

Just the other day I looked out a window and saw a couple doing their morning walk together.  Just a simple walk.  I was SO jealous!

His breathing has been gurgly recently.  It’s such torture to listen to.  I asked him if it bummed him out that it had gotten worse again.  He shrugged and said “not really – it’s all just part of the disease.”  He has such amazing equanimity.

We weighed him.  He was 168 pounds.  Later he joked to me.  “Last time I weighed myself I was 190.  I missed the 80’s and 70’s.”  He takes it in stride.  I see a gaunt face, a body wasting.  (Although his gaunt face is actually making him look very sexy.)

I used to go at 120%.  I never had time for anything.  Now I have lots of time, in some ways, bits of time here and there, unknown lengths of time.  It’s hard to start anything when you don’t know how much time you’ll have.  Even a cup of coffee.

So here I sit.  A caregiver in suspended animation.  Looking for my resilience.

 

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?

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.

 

Aging at Warp Speed

This was a journal entry of mine four years ago, about 2 years after the initial diagnosis:

For me this disease in our lives is like watching someone age before my eyes. He was a big strong handsome guy – think Tom Selleck (I always did). He could lift anything and never needed to ask for help. He told me once he’d never felt physically vulnerable, which was the opposite of me since I’m 5’2″ and grew up in New York City.  I always felt vulnerable.

He’s got a  hunched over posture now. One of the things I noticed even before he was diagnosed was the change in his smile. I didn’t know then that it was increasing rigidity of muscles in his face. He has trouble getting up from a seated position, particularly from soft chairs or couches. He has far less energy and stamina.   His speech is slurred and his voice is quieted. We no longer play golf, or go skiing.

There isn’t a day that I can forget about his PD. Although the symptoms aren’t that bad yet, there’s always something new to notice.  A crash signaling a fall from halfway up the stairs. A glass slipping out of his hand and smashing on the kitchen floor, again. The help needed to button a shirt, or get on a winter glove. The inability to fold laundry anymore.

Each symptom I noticed threw me into anxiety about what would come next. If he couldn’t do this now, what would become impossible next month or next year.

Three months ago something changed. I decided I had a choice. If I kept on fearing what would happen in the future and making myself miserable in the present I was suffering twice. Instead, I started asking myself a simple question.

“Can I manage what is going on right now? Is today okay?”

I made myself notice all the good in the day. I started seeing that though he was had trouble cutting up things in the kitchen (he always enjoyed cooking), he can still make wonderful meals.    Although we can’t go skiing, we can take walks in the snow with hiking poles. Although we can’t hike up big mountains, we can enjoy the lower trails. And when he struggles to get up from the couch, sometimes I joke and push him back down and we both laugh.

I know things will change from day to day and month to month. I don’t know what the future will bring. Right now, I’m focused on now.

NOTE:  As I read this now, although 4 years have gone by, it’s about 20 years of aging.  He has more daily challenges now than my mother had at 95 years old.  We can barely go an hour, never mind a day without the disease saying loudly “I’m here!!!” Without a new symptom cropping up, without struggling to figure out how to mitigate the impact of the disease.  I try to stay in the day, and in the hour.  I try to stay in the now.  That alone is hard work.

Good Day or Cranky Day

I was cranky with my husband yesterday as I tried to complete a project. In finishing I had to call a neighbor to help put boxes up on the high shelves in the garage – something Larry could have easily done in years past. As I do all this, I wonder if he is sitting there frustrated that he can’t help. Or is he so in his own world of challenges and pain that he doesn’t even notice?

I found myself very impatient, yesterday, with all his incompetencies, then guilty for my impatience. He can’t get out of a chair alone so I have to help – even with his lift chair. He was trying and couldn’t, trying to shift his weight with such ineffectiveness! So I jumped in to help before he even asked. I need to cultivate more patience – it would allow him more independence and make me feel less responsible. There’s rarely any rush.

Eating is really becoming difficult – finding the right foods, cutting them to the right size, finding the right implements. He wanted a big breakfast. But the tiny sausage pieces and home fried potato chunks kept getting stuck in the roof of his mouth. Even though I thought I’d cut everything small enough. He doesn’t have the tongue strength to move things around in his mouth easily.   So I had to keep sticking my finger in his mouth to dislodge things.

His eating is so slow that I am done way before him. Then the question becomes what do I do while he is finishing? Do I stay with him and read the paper? We can’t have a conversation because he can’t talk and eat because of the risk of choking. I have to stay close in case things get stuck or he chokes. Do I get up and start cleaning up the kitchen? What I sometimes end up doing is getting myself more food, which I don’t need, because if I’m sitting there I should be eating, right? Cultivating more patience, eating more slowing and mindfully would both help.

The real problem was that my focus was on getting my project finished, then cleaning up all the mess that made.

Whenever I have a task that takes my time and energy, I lose my patience and resilience to be available for his needs, not just physically but available emotionally, to help with grace rather than with resentment.

Lesson for the day: Ask myself whether it’s worth the price of impatience and resentment, to get the task done. Make a conscious choice with awareness of the consequences. Did I really need to get all that stuff done in one day? No! Did I think about how cranky it would make me? No. We both would have had a better day if I’d chunked the project into several days.

I try to remember that my goal now is creating a good life for both of us, one day at a time. It’s a different life with different goals.   The old way of thinking, of living, of checking off my to-do list, of putting things on my to-do list in the first place without thinking of the importance versus the consequences – that’s what messes up a good day.

Each day matters more now. It’s important to have as many good days as possible.

Losing Equilibrium

How easily our  equilibrium tips out of balance. This time it was a hard fall.

We had just started the standing portion of his exercises. I had to bug him to even start them. Some days are just like that. All of a sudden, I saw him lean to the left, tring to catch his balance. I was only 3 feet away and I reached out to grab him but just missed.

CRASH! He hit the tile floor hard with his hip and his elbow, and his head slammed into an antique victrola case next to him, bouncing open a door.

Okay, we were lucky. He didn’t break anything. There was no bleeding. It wasn’t a crisis.

Most of his falls, which happen at least once a week even with the walker, are slow and soft. His biggest concern when he lands on the floor is how to position himself so I can help him up.

This time he just wanted to lay on the floor and not move. I go through the whole routine – checking his head for blood, checking his pupils, asking about dizziness.

I feel adrenaline and fear that morphs into anger – at him for falling, at me for not catching him and for urging him to exercise in the first place.

So after just a few minutes his self-assessment is that he’s okay. We figure out how to get him off the floor, without hurting my already aching back.

He takes it easy all day. The outing we’d planned for the day is off. I readjust my mind to a different day.

But the fear sits with me. The unpredictable nature of each day eats at me. I find it hard to stay present with the fact that things are okay for now.  My body stays tense, as if waiting for the next blow.

I’ve lost my equilibrium, just as surely as he lost his when he fell.