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?

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.

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.

Finding the Quiet Pools Between the Rapids

I was looking through a journal I kept two years ago.  We had moved to Florida seven months earlier but were up in Massachusetts visiting friends and consulting with my husband’s neurologist about the Florida neurologist’s diagnosis of possible ALS.  It wasn’t ALS, it was MSA, but regardless, the ever increasing symptoms were a heavy weight.

The caretaking increases and the fun continues to decrease.  I’m tired of trying to encourage him to exercise.  Tired of using my energy to try to motivate him.  Tired of his “I can do it,” and then he can’t.

I’m tired of not getting to feel good about me.  I’m tired of being so inactive – well, active in the sense of moving to help him but doing so little else.

Our situation won’t change for the better.  I have to learn to accept rather than to fight against.

I also have to start looking at what we do by myself and make what I think are smart decisions about how to make things easier for both of us.

Smart decisions.  Simplify,  Think how to make my life easier.  then also give myself respite times during the day.  A run.  Reading.  Painting.

Also I should wait until he asks for help rather than jumping to do things for him, both so we see what he needs and so I do less.

When people ask how we are, I tell them all the problems, because things keep getting worse.

But if that’s the bottom line, perhaps I’m missing something.  This is our journey, my journey.  What is there to learn?  Spiritual presence?  Acceptance?  I’ve been fighting against the disease, against my part of the journey.

What if I go with the flow of the river, ride the rapids as best I can, find the quiet pools and revel in them?

As I read this now, I realize  I’m actually in a better place now.  I am more accepting, more able to find the quiet pools in the river between the rapids.    


Some days I have nothing left.  They sneak up, seemingly without reason.

The several days previously I’d been fine for most of the day.  Five PM is when I always run out of steam these days, but until then I was good.

But yesterday I woke up with no energy.  I felt like a stuffed animal with the stuffing kicked out of it.  I sat around wondering what to do with myself.  I wasn’t sleepy – didn’t want to nap.  Didn’t want to read or watch TV.  Couldn’t face doing chores.  Didn’t feel particularly depressed, just exhausted.

There was no reason.  I slept okay.  I hadn’t any alcohol or sleeping pills the night before to slow me down.  I hadn’t overdone the day before.  There hadn’t been any catastrophes to deal with, no falls, no choking.

I was just completely washed out, my body just drooped.  I helped Larry the best I could.  I tried to nap but couldn’t.  I left all the chores for another day.

Someone who had been a caregiver to her husband with Parkinson’s Disease said to me “you won’t realize how tired you are now until this is over.”

Secrets, Suicide, Promises, and Grace

I encountered two extremely different perspectives on being a caregiver in the last few days.

The first was in our local Herald Tribune.  Columnist Carrie Seidman wrote an article about Bob Dein, who cared for his wife after her diagnosis of Parkinson’s Disease.  The tragedy of his experience evolved from a combination of his wife’s desire to keep it a secret and her increasing cognitive impairment.

Many people associate Parkinson’s Disease only with the tremor, or bigger movements that they see from Michael J. Fox.  There are many other far more troublesome symptoms.  For some, like Bob’s wife, there are delusions and psychotic behaviors, and dementia.

The article went on to describe the enormous weight Bob carried in secret and how it wore him down to the point of planning suicide.  He wanted a way out and he couldn’t see any other way. Luckily, with grace, he brought his wife to the hospital and got help.  Unfortunately, it appeared from the article that he still felt some guilt. “I always felt that she died thinking I didn’t do what I was supposed to do.”

While my situation is no where near as grim there have been times where the thought of suicide fleetingly appeared, along with running away to a foreign country.  I never planned it, I never actively considered it.  But it came along with the moments I thought “I can’t do this anymore, I just can’t.”

Thankfully, it helps that we have at times taken advantage of support groups, some  run by the Neuro Challenge Foundation where Bob Dein is now putting his experience to good use as a board member.  We, unlike Bob, are not isolated.

I feel lucky compared to Bob in our situation of caregiving.  From day one Larry has been open about his disease.  He said he wanted to tell, because if it had been the other way around he’d want to know.  We talk about it early and often, to family, friends, sometimes even strangers if there’s a reason to explain why he looks or behaves differently.  Sharing prevents isolation, and helps others understand.

I read on some of the online discussion groups that there are many people who don’t want anyone to know.  Of course, that is ludicrous.  The outward signs of neurological diseases make others wonder about you when you walk differently, talk differently, or your facial expressions change.  Absent knowing, they make up a story – maybe he’s an alcoholic, or on drugs, or mentally ill, etc.   I also read about others who promise they will never put their loved one in a nursing home.

I’m lucky in that he’s still Larry.  His personality hasn’t changed.  He has no psychosis, no dementia.  He only had hallucinations for three days as a result of a medication that we immediately stopped.  He still has a sense of humor.  Caring for your loved one who isn’t really the same person you loved must be brutally hard.

On the other end of the caregiving spectrum is someone who was visiting with us.  For three months, he gave full time care at home to his first wife who had cancer and was paralyzed by it.  He described it as his finest hour.  He is a very spiritual man and felt that the worse his wife became the more spirituality was required of him.  I guess I think of it as grace. Even he and his wife, at some point, realized he could no longer do it alone as her condition progressed.   And three months is different than many years.

There is no glory or grace in being a caregiver for me.  If we had all the money in the world, I’d hire someone wonderful to do the caregiving so I could just be the wife.  But we don’t, so I’m the caregiver. A sometimes begrudging caregiver, mostly loving caregiver, but a reluctant caregiver nonetheless.  I’m just not much of a nurturer, and I’m certainly no martyr.

Someone said to Larry in my presence, “you know you’re not a burden to her.”  I disagreed.

“Of course he’s a burden, or at least his disease is a burden,” I said.  “Let’s not sugar coat this.”  The person looked dismayed.  “It’s a burden I am choosing, now, because I love him,”  I went on to say.   “I know he would do it for me in a heartbeat.”

There may come a day, however, when the burden will be too much, that we will  have to consider other options, including a nursing home, as hard as that decision might be.  I can’t promise it will never happen.  I only hope that if I can’t see the time has come that someone else will help us see it.



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.

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.