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.    

Exhaustion

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.

 

 

Losing Sight of Yourself

It’s all too easy to lose yourself to caregiving.  It’s an insidious process.

The needs and responsibilities mount up over time, almost without your noticing.   You start giving a little help here, a little help there.  Maybe you hardly notice.

I didn’t think of myself as a caregiver two or three years ago when we moved down here, although I was.  I made the doctors appointments, helped with buttons, and socks, and cutting food, that’s all, not much.

As his symptoms increased, so, too, did my caregiver tasks.  Each one takes time, energy, some little, some big.  I didn’t really notice that as you add something to your day something else falls away.

The other day I asked Larry what would he say to caregivers.  “You don’t realize how hard it is,”  he said.

“You mean I should tell other caregivers they don’t realize how hard it is?” I asked.

“No. YOU don’t realized how hard it is,” he said, looking at me.

Sometimes it isn’t very hard.  Like now.  I’m sitting outside with my feet up on a cushion, and a hot cup of coffee beside me.

Course, I’m listening for him.

I do take care of myself,  although I make his doctors’ appointments first.  But I’ve had my annual physical, and seen the dentist and all the other stuff you have to do to know you are healthy.  I shouldn’t gloss over this because health is a real caregiver risk.  The statistics are pretty awful about how many caregivers die before the person they are caring for die.  Stress takes its toll.

It’s not just the tasks, the time that caregiving takes, even the physical strength to get this 200 pound, 6’2″ tall man from chair to walker to wheelchair to bed.   It’s the fact that I want to make him happy.  He has limited time.  I want him to be happy, want him to have his choices.

I’m always asking what do you want to do?  What do you want to eat?  Where do you want to go?  What do you want to watch on TV?

In the process I start to forget to think about what I want.  Or what I need. And then I start to not even know what I want.

Sometimes I wake up in the morning and get up knowing I’ll have an hour to myself before he wakes up.  I don’t even know what to do with myself.  There’s always chores, of course.  But what do I WANT to do???

When we first had someone come to stay with him for 3 hours a week so I could get out to do things, I did errands.  Got groceries, my bone density test.  Those things are important but when I ran out of errands I didn’t know what to do.

It’s only recently that I’ve started to say no to him, in little and big ways, when I think it will take too much out of me.  I realize I have to conserve my energy.

The other night I had already eaten and the kitchen was clean.  He’d eaten early and so now he was hungry.   I asked what he wanted.  “A burger,” he suggested.    “Grilled cheese?”  No I’m not making a burger or grilled cheese.  I don’t want to wash pans.  I’m tired.  We settled on toasted cheese.  No pans.  I felt a sudden wash of guilt.

The biggest request I said no to was spending time up in Massachusetts, where we came from two and a half years ago.  We have important family and friends there.  I agonized night after sleepless night.  We’d gone the last two summers and it was exhausting and his symptoms all increased.  And his needs were less, then.

I considered one way, then another, for too many sleepless hours.

Driving, flying.  Flying and having someone drive our car.  What to do with the power wheelchair.  How to find the appropriate accommodations.  I went back and forth.  Go, not go.  A month.  No!  Maybe a week in a handicap accessible timeshare.  Flying.  Borrowing a wheelchair.

It didn’t help when I read one of the online discussion groups answering someone’s question about taking their loved one on a trip.  GO, go, go, many of the answers said.  Don’t deprive them of this.  You can make it happen.  There was nothing about the emotional and physical cost to the caregiver.

Finally we decided not to go.  He didn’t want to go without his power chair.  He wanted his comfort, he said.

I realize as I write this, that it’s not a good example of me saying no.  He was the one who finally said no.  Well, I guess I said no to driving up the 1500 miles in the wheelchair van.  Darn.  I knew right from the start that it would be too much for me no matter how we went.  But I didn’t say no.

It’s hard to remember that I matter, too.

 

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.

 

Finding Ways to Play

People seem impressed when we get out and do things.   But it’s a way to maintain a certain normalcy in our relationship, and in my life.

We’ve gone to a Patriots game  – I borrowed a wheelchair because he was only using the walker at the time.  We’ve gone to museums like the Dali Museum in St. Pete where they have wheelchairs to borrow at the entrance, and the Thomas Edison and Henry Ford houses in Ft. Myers, where we just took lots of breaks and didn’t see everything.

We do smaller things like taking the old golf cart down to our park to watch the sunset with a cocktail.   Or bringing sandwiches with us to the beach and just sitting in the car eating while we watch the sights.  Some days I help him into the pool and he leans up against the far wall.  I stand close and we play catch with a floating ball, laughing at all the misses and all the splashing.

For the 4th of July we went to Selby Gardens, right on the water in Sarasota, for their Extravaganza Cookout.  He had seen it in the paper and wanted to go.  We made reservations (expensive, as it was a fundraiser) and invited another couple.

It’s pretty exhausting just to get ready to go.  Feed and walk the dog.  Get Larry into the shower.  Help him wash his hair and shave.  Dry and dress him.  Brush his hair (he’s very careful about his hair.  He’s got a great head of hair.) Deodorant.  After shave cologne.  Eczema cream on his nose and ears.  Shoes.  Into the wheelchair.  Get his glasses.  Get his sunglasses.  Get him something to drink.  Be sure we have an extra catheter, kleenex.

Then I shower, wash and dry my hair, dress, do make up and find jewelry,  shoes.  Is it worth it, I wonder, at this point?  I’m exhausted!

We picked up the other couple and headed into town, watching the clouds roll in.  Just as we arrived at the Valet parking stand the sky opened and the deluge began!  Luckily our friends are chill and we all sat in the van for about 15 minutes.  Even the valets disappeared because of the lighting. Finally it let up and we managed to get the van situated so the ramp would extend beyond the river that was now the road.   Into the building we went, all soaked in spite of umbrellas, but laughing the whole way.  What the heck?  It’s warm in Florida in summer.

Eating out is complicated now.  We kept rotating the table to find a way for him to roll up and fit his knees under it.  Then I filled two plates at the buffet, considering which foods would be safest and easiest for him to eat.  Our friends have seen him eat and know I often have to put my finger in his mouth to move the food around for him, and that he sometimes drools. It’s not always pretty, even though he’s still a handsome guy. I wondered what the couple who sat down at our table thought.  I noticed them glancing over then looking away.  I didn’t much care one way or the other.  They were friendly and so were we.

The rain finally stopped and we were able to meander around the gardens.  He  missed the path at one point and rolled into the dirt, but our friend pushed and they easily got back on track.  For some reason, Larry was completely tickled by the moment and seeing him laugh made the rest of us laugh!  We arrived back at the waterfront in time for the fireworks.  Of course Larry had his wheelchair so he was comfortable and we just stood around him watching the display and listening to the patriotic music from the speakers behind us.

These are the moments, the big ones and the little ones, that make all the effort worthwhile.  We are a couple.  I am a person, not a caregiver.  A wife, not a nurse.   For these moments the symptoms, the trouble, the terminal diagnosis, all recede into the background.   We are people with friends not people with a disease.

It may be exhausting to go out and do things, and I may not always feel like I have the energy to make it happen.  But it is always worth it!!!

Sleepless and Not in Seattle

Last two nights were rough.

He uses a CPAP machine for sleep apnea, which is a condition common with his disease and causes his breathing to be very labored or even stop many times during the night.  The machine applies gentle pressure to push regular air into his lungs.  It requires him to wear a mask over his nose.  The design of the one he had was no longer working well for him due to pressure sores so we went down to our local medical supply store and got him fitted for a new one three days ago.

But though they fitted the mask in the store, once he went to lie down in it the fit no longer worked, meaning the machine turned off or he pulled the mask off in frustration multiple times during the night, requiring my help.  And then awake, he needed to go to the bathroom, requiring my help.   His speech is so impaired (especially lying down) that it’s difficult to even know what he needs each time he wakes.

Frequent neediness during the night is exhausting and frustrating to both of us.  I get cranky and impatient.  Then I think “what if he dies tonight in his sleep and this was our last interaction.”  Sudden nighttime death is not uncommon with his disease.

I told him “I apologize in advance for any mean or cranky comments I make right before you die and you promise to forgive me for them in advance, ok?”  We laughed a little and he agreed.

And now we have to go back to the medical supply place to try again.

More problem solving.  It’s an endless series of leaks.  You patch the leak in one place and the water starts pouring out somewhere else.

What’s hardest are the problems or symptoms for which there are no solutions.  That doesn’t mean I stop trying, though.  So my mind spins through possible reasons for the problems and possible treatments to try –  or changes to make.

Being woken at night is the worst because that’s when my mind really goes into endless problem solving loops.  What about this?  What about that?  What if this happens?  Or that?  Okay, now he’s gone back to sleep but I’m still there worrying. Ha!

I’m brain dead today and just wanted to nap but we had the respite care volunteer coming to give me three hours.  I was almost too tired to do anything but I know it’s good for me to get out of the house.  So I went down to a local art supply store (it’s actually a house paint store but they have a wall of art supplies) and bought two new paint brushes – a little personal luxury.

And now I’m at our local library which is old and tiny and consists of only one room.  I’m sitting in a rocking chair on the screened porch.  The floors are old weathered wood, the ceiling is narrow beadboard and there are big fans spinning lazily.  I’m looking out on grass and palm trees and blue skies.  I’m not on Larry alert, the way I always am at home.

I’m glad I got out of the house.  Maybe I’ll be more resilient and less cranky when I get home.

When the Caregiver Needs Care

I woke up with vertigo – the bed was spinning, the room was spinning.  But that didn’t stop my caregiver responsibilities.  He still needed help going to the bathroom and getting back into bed.  I tried going back to bed but it was worse.  I got up with the hopes the dizziness was less when I was upright.  Plus I had to feed and walk the dog.  Brutal.  It was a short walk.  I had a little tea and toast.  Couldn’t face coffee.

Then time to help him get up and get dressed.  We both need showers but I can’t face it.

Got him some breakfast.  Gave him his pills.  Helped him use the nebulizer.

Vertigo happens when the crystals in the inner ear clump up and get stuck in one place – the wrong place.  I tried the physical maneuvers I found on YouTube that are supposed to move the crystals.  No help yet.  I’ve tried the vertigo medication, which I have for motion sickness.  No help yet.

He needs to go to the bathroom again. It’s good for him since he’s increased the medication that is supposed to relieve the swelling in his feet and lower legs by flushing fluids out of him.  Maybe it’s finally working.  But painful for me to get up and help.

Just like with a baby, caregiving responsibilities don’t stop because you don’t feel up to it.

I am going to let go of anything else that needs to be done.  I will call for help if I need it.  I will try not to feel sorry for myself.   This will pass.  I will muddle through.

Anniversaries and Anger

We celebrated our 22nd anniversary last Friday.  Larry wasn’t feeling great.  We had talked about going to a favorite restaurant for a late lunch/early dinner and then to a waterfront bar for a drink, but were contemplating staying home.

I encouraged us to go, even though I barely had the energy.  I figured this might be the last one we got to celebrate.

So I showered and dressed, helped him shower, shave, and dress, and off we went in the wheelchair van, several hours later than planned.

I’m so glad we went.  We found easy parking for the van.  We chose from the menu carefully so I wouldn’t have to dislodge food that got stuck in his mouth.  We sat at a table with lots of people-watching so the normal lack of conversation between us due to his speech challenges wasn’t troublesome.

He made a toast with a wry smile.  I had to ask him to repeat it 3 times before I got up and leaned toward his mouth to hear.  “I hope the next 22 years are as good as the first 22.”  Hmmm.  If only…

When we’d finished eating the restaurant was far more crowded and navigating the path through the tables and chair was challenging in the wheelchair.  Most people got up and moved their chairs out of the way, but one young woman didn’t bother and Larry clipped her chair as he went by and his wheels carried her chair and her along with him.  She wasn’t happy.  I thought it was kind of funny!

After dinner, we drove over to the waterfront bar in a big hotel. They took good care of us and we sat side by side, he in his wheelchair and I in my rattan chair.  He had a rum and ginger, I had a Prosecco.  We watched the sunset and held hands.  It was as romantic as all the other anniversaries.  We came home smiling.

But then he had a breathing slog – when the phlegm gets thick and lodged in his throat and his breathing is shallow and gurgles with each intake.

I got him a hot moist cloth to breathe through, massaged his chest and neck, and then gave him one of those pillows with the seeds in them you put in the microwave for his chest.   It’s frightening for us both, what I do isn’t really useful except in making me feel like I’m trying, and it underscores the helplessness I feel in the face of this disease.

He goes to bed with his heating pad and his CPAP breathing machine, saying “I love you” just before I situated the facemask.  “Did you say that in case you die during the night?” I asked.  He nodded.  Romantic, right?  NO – then I wasn’t awake all night listening to be sure he kept breathing.  We laughed about it in the morning when I told him I’d consider myself loved if he’d stop telling me just before sleep.

Days later, though, we talked about the insidious emotions – the jealousy we feel toward other people who can do what they want, enjoy life without these challenges.  We both feel so angry at times.  It’s hard not to.

So I have to keep trying to get us to experience those more humorous, enjoyable, and even romantic moments, even when I don’t feel like it.  Even a drive around the neighborhood in our ancient golf cart so we at least get out of the house helps to chase away the dark times.

My Finely Tuned Race Car Needed Dental Work

It’s early and I couldn’t sleep but I also don’t want to start the day.  It’s been a hard week, for what seems like a small thing.  He had dental work three days ago.

I joke that he’s like a finely tuned race car – doesn’t take much to throw everything out of whack.

It started with a broken tooth. No pain, but obviously problematic. The choice was a root canal and a crown, or pulling it and adding a replacement to his existing partial plate which fit well and gave him no problems. He opted for the latter, a relatively simple procedure.

Two appointments for Tuesday were scheduled. He took an anxiety pill in the morning. That appointment didn’t require novocaine. The afternoon appointment did. All went well – at least for his teeth.

But the day seemed to throw his balance off and make him weak. He didn’t have much of a toothache but instead said his whole body felt beat up. He’s been tired and achy ever since.  Which means he doesn’t really want to exercise.

Eating, already a challenge, has been far more difficult with a swollen lip. He’s had problems to get the food all the way into his mouth so it gets stuck between his lips. Obviously that’s worse with the dental work.

He’s depressed, too. Not smiling much. Hardly talking. I realize his smile is what keeps me going.

So is this just the dentistry and it will pass? Or is it a new level of symptoms that will just have to be gotten use to? That’s really the problem – which is it?  That’s always the question.

I spend so much time wondering about the cause of each new symptom and trying to figure out if some tiny change is the culprit and if I change that change, can we improve things. It’s an exhausting round of thinking.

All our lives when something goes wrong, you figure out how to make it better, or wait it out until it gets better on its own. Got a cold? Wait a week. Got a fever? Take an aspirin.  Infection?  Antibiotics will make it better.

There is no better in this scenario! There is only the same or worse. That’s what is so damn hard! So hard!  Each transition to a new plateau upsets the finely tuned balance.

Time to start this day.  It will probably be fine once we get going.