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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.

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.