Ouch

Ed's in the hospital and I've had to leave the last two nights because he's kicked me out.  Last night, he thought I had a knife and knew I was going to hurt him.  He said "you know I love you but I don't trust you."  After sitting with him for 10 hours, he thought I was going to kill him and I had to leave.

Tonight, he told me I was not a god-fearing woman, I should never touch him again and I needed to leave.  An hour earlier, I'd been massaging his legs, relaxing with him.  I have no idea why he turned to spewing biblical phrases, the ten commandments, he wanted to be baptized in the river and wanted security to escort me out.

My heart is torn, it's broken.  I know I know I KNOW it's not Ed, it's something else.  Ed's been hallucinating non-stop.  It's the craziest thing.  Most are paranoid and fear based.  He's constantly talking about being attacked, about atrocities being committed against children, that he's been set up, he's been falsely accused of crimes.  He sees people inside the dresser.  He saw a child spraying graffiti on his wall.  We spent an hour with a receiving line of his past co-workers; he introduced me and proceeded to have conversations with each person.

This morning, he spent hours directing a movie.  In some ways, it's amazing to watch him coordinate this thing in his head that he's actually seeing in front of him.  He had camera people, script writers, actors in front of him.  Three nurses walked in the room and suddenly he cast them as extras.  I'm not quite sure what the movie was about -- something to do with flying a plane.  Earlier in the morning, he was flying a plane with the nurse.

The doctors can't decide what this is.  At first we thought dementia.  There's a certain kind of dementia (frontal temporal dementia or FTD) affiliated with ALS.  However, dementia isn't hallucinations.  Ed's still as sharp as a tack.  He knows who people are.  He doesn't know where he is but he does... for example, he saw men in gas masks with weapons outside and said "you know we're in a military facility.  There's something going down."

So what causes hallucinations?  It could be medication related.  But he hasn't been on many meds for at least a week due to other reasons so that's questionable.  But it's still an option.  Last week he got a catheter and it became really read and icky within a few days.  Now he has a urinary tract infection, which can cause hallucinations under the right circumstances.  Maybe that's it.  They eliminated organ failure with a blood test.

So now it's a waiting game.  They're monitoring his meds and giving him antibiotics.  All I can do is wait.

I'm here, alone.  It's hard.  I wonder how he is.  That is my overriding worry and hurt.  Yes, for sure I feel awful he said these things to me but I know it's not him.  My worry is for him.  How tired he must be.  His brain is always, always working.  Even as I was massaging his legs earlier, I could see his eyes darting around, his mouth moving.  His body was still but his brain was on overdrive.  I don't think he's sleeping.

My wish is for him to be peaceful.  Relaxed.  His body has failed him and now, his brain.  My smart, loving, kind husband is in turmoil.  He doesn't deserve this.

This, by far, has been the hardest....

<<< One of my favorite pictures of us.  At Disneyworld's 3D "Bugs Life" - 2014.

5:45 a.m.   Think I've slept about 3 hours total. Probably 2 yesterday.  I'm pretty sure Ed's slept even less.

So the latest development is Ed might have dementia.

The roller coaster of grief, sadness, frustration and what the fucks??  has been far too much.  I feel like I just got off the worst ride of my life.

I sit here, across from Ed, watching him as I type this...  he's full of nervous tics, he's hallucinating, and sometimes he's totally lucid.

The most heartbreaking of these hallucinations was around 3 a.m.  He shrieked with fear, looked at me, breathing heavy and kept saying "oh my God, oh my God."   He said he was walking and fell in to "this" -- he nodded toward his body.  "This is the worst nightmare I ever could have walked in to" he said.  It took him an hour to calm down.  He kept asking why he couldn't lift his arms.

Earlier today, he thought a friend was on fire.  He asked me if Mia - our dog - was ok.  He heard she was in a fight on the playground.  He heard someone screaming and had to go outside to check.  He was screaming he had rats on his body.  Several times throughout the day, he's thought ants or gnats were swarming on his face and in his mouth.

The hoyer lift was over his bed (which was true) and he felt oil dripping on him.  I was holding the remote to the bed (true) and he thought the cord was falling water.  He called out for my nephews because he new they were here in the house.

He's constantly mumbling, non-stop talking for lengths of time.  He talks to various people - our aide, my dad.  Right at this exact minute he's telling me about seafood selling for $2.49 a pound.  About an hour ago, he was making these weird mouth moves.  I asked him what he was doing.  He said he was eating pecans.  I went with it and asked him how they tasted.  Not like they used to, was his reply.

Leading up to this possible dementia diagnoses has been weeks of changing meds, of thinking (once again) he has days to live, of spinning like a grief-stricken tazmanian devil trying to manage ever-changing nurses, aides, end-of-life "stuff" (paperwork, bank stuff, last minute laywer advice).  The worst - the very very worst of this past week is seeing my husband so uncomfortable.  My God, he's a rock.  Even with hallucinations, he's sweet, kind, never complaining.  Through these moments of thinking we're trapped in an elevator, he's worried I'm ok.

These past few days have created a screaming monster in me.  Do you remember that scene in Term of Endearment?  Where Shirley McLaine is pleading with the nurses to do something, do anything to help her daughter who is dying of cancer?  This was me times 1000.  The goal of hospice is to make the patient comfortable and this was not happening.

Everyone in hospice has been nice.  They've been trying hard.  But for god's sake -- Ed's been on so many different meds and has had three different nurses who've never seen him before proclaim he's got days to live while he hasn't had more than a couple hours sleep in the last few days.  Where's this comfort care?  Why isn't he sleeping peacefully?   MAKE MY HUSBAND COMFORTABLE.

(He's now asking me about his boat.  He hasn't had a boat in years...)

Today is Wednesday.  On Monday, I was crying and screaming to anyone who would listen... the hospice social worker, the substitute nurse, the clinic manager, the VA nurse who has nothing to do with hospice but just happened to call to say hi...

By Tuesday I knew I couldn't do this anymore.  It didn't seem like he was dying but what do I know? He's breathing like a champ.  His blood pressure is awesome.  He's pooping and peeing regularly.

(He is now asking me why he can't move his legs to get them out from under the covers.  I told him he can't move.  He said "that's stressful"...)

Yesterday I called the VA social worker to ask about nursing homes.  Could I use one for respite so I could regroup, figure out a plan?  Do I need to look at one for forever care????

(Ed's now crying and saying this isn't working.  I said what?  He says he's not talking to me, he's talking to the pastor)

So the social worker said she'd help find something and call me back.  The substitute nurse was going to order new meds (yet again), stronger meds, to get him to relax and to sleep.  In the meantime, I get a call from the head of the VA ALS hospice department saying he's gotten wind of all of this nonsense and needs to help us.

I thought I was going to fall apart right there.  Finally.  Finally someone took my hand and pulled me out of this tailspin and said we're going to figure this out.

Ed's going to the VA today, to their hospice center.  A bed hasn't been available in over two years. The ALS doctor said he always asks to see if he can get his patients in to the center but there is never an opening when he requests one.  Yesterday, there was an opening for Ed.

(Ed is now wondering who's changing his diaper... he's asking me who's next to him.  He thinks the bed is flipping over.  I got up and pretended to stop it from flipping.  He was literally shaking.  I told him the wheels were on the ground and the bed felt stable now.  Yes, he agreed, it felt much better.)

The doctor then told me he thinks Ed has dementia.  About half of all people with ALS have behavioral changes but those changes don't impact their ability to function.   They might just not "be themselves."  Of that 50% - 25% develop dementia.  I'd always assumed dementia on-set was early with ALS.  Not three years in and not overnight.

The doctor isn't sure it's dementia.  It could be end of life hallucinations but, the doc said, that isn't really how people with ALS die.  In his 20+ years of working with ALS, he doesn't typically see people go through this as they approach the end of life.

It's now 6:42.  Ed wants to get out of bed right now and get to the hospital.  I know he's worried about so many things but isn't able to specifically verbalize it.  He wants to be on time so he's wigging out about leaving right now.  He's worried about how he looks because he's in a diaper and wonders if I'll wheel him in to the hospital like that so he's asked me 50 times to take off his sheet to see how his legs look.  He's wondered about which pants he'll wear to church.  How will he smoke when he's in the hospital?  I sit by his side virtually 24 hours a day and attend to his every need.  Who will be there to change his channel?  Itch his nose?

Ed sort of understands why we're going.  He knows he's "not right" and wants to feel better. Yesterday, however, we were talking with my niece, who's in Russia.  Ed told her he had some good news.  He doesn't have ALS anymore and he's going to the hospital to talk to the doctor about it.  I had to tell him that wasn't exactly right.  He still has ALS.  The look on his face was awful.

So..... balls are still up in the air.  Nothing is certain other than the fact this sucks.  But now I feel a sense of relief that Ed will be getting round-the-clock care.  I can get some sleep, so can he.

As the thought of this possible diagnoses sets in, more roller coaster thoughts creep through me.  I was (somewhat) read for Ed to die.  Well, not really.  I want him here forever.  But not like he's been. I want him to be free of this wretched disease.  If he has dementia, how long can he live?  Will this life be worse or just different?  I know I can't handle how it's been the last several days.

I'm sweeping those thoughts aside.  One thing at a time.  (Right now Ed thinks we're in the hospital and we need to go faster to get to the room... I'm going to pretend I'm pushing him in the room)

I can't cry in front of Ed.  That makes things a million times worse.  How can I hold in these tears any longer?  I keep looking at him.  If he's looking my way, I smile and say "hey baby...."  If he's here with me he smiles too and calls me baby.  If he's somewhere else, he looks past me.

It's now 7 a.m.   Time for me to get ready.  Ed's now talking to someone else.

This is by far the hardest, hardest thing I've ever done.

I cannot stop crying

Midnight.  I can't stop crying.  For so many reasons.

I was just holding Ed's hand and rubbing my face along his palm.  It's been so long since I've felt my husband touch me or hug me or hold my hand.

He's on day two of another "is this it or not" episode.  Right now, he's in and out of reality; the nurse thinks it's because he's on so much medication because yesterday, he couldn't breathe.  We just kept pumping morphine in to him in order to get him to relax and breathe.

It stabs at my heart to see him this way.  I cry because I can't understand him.  Either he's mumbling or slurring so much he's incoherent.  Or he'll say something like "I love you baby.  Where's Mrs. Murphy?"   At one point, he woke up begging me not to hurt him.  My heart got stabbed big time.

My dad was downstairs a couple hours ago and said I should think of it as him getting a LOT of sleep.  Ed's relaxed, he's breathing good now, he's not choking.  So there's that.  And that's the overriding thing -- he's not in pain, he's not gasping for air.

I'm crying because I don't know if my days with him are just that:  days?  Months?  I don't know.  I'm so sad because I just found Ed.  I waited so long to be with someone.  I'm crying because how fucking selfish is that?

I'm crying because I'm scared of of my mind that I won't be able to help him in the next 10 hours before a nurse gets here again.  That he'll choke or be in pain or vomit and I won't know what to do.

The other night I had to give him a syringe full of this last resort medication for when he was choking.  The needle seems like a foot long.  It didn't work.  I was going out of my mind with fear -- it turned out the liquid med was too thick to go in to the skinny needle.  It wasn't me at all but holy cats, in the moment, I was insane with listening to him choke, hearing him plead with me to fix it, not being able to get the syringe loaded.... will that happen again tonight???

I'm crying because my life without Ed feels scary.  I know I don't hold the prize for having a loved one die.  People pick themselves up and go on all the time.  I try to shine up my shield of armor.  Life will move on.  But tonight, at midnight, I feel empty and scared and anxious.

That's just a little part of my tears.  Mostly I'm just so sad.  So sad for Ed, all skinny and sick.  I crawled in to his hospital bed the other day and we both felt so good lying next to each other.  It's a pretty small bed so I had to scooch up real tight next to him but it felt so nice.

12:18 - he just woke up and saw me crying.  He said "I just thought of something" so I got up to sit next to his bed.  I asked him what he just thought of.  He told me it's going to be ok.  Don't cry baby, he said.  I kissed him and said, yes, it's going to be ok.  He fell back asleep.

I'm back in the chair across from his bed.  And I cannot stop crying.

Happy to be here.

The last time I wrote here was September 28, when Ed came home from that awful weekend in the hospital.

The weekend I thought he was dying.  We all thought he was.  I look back at what I wrote because I wonder what I missed.  Did I jump to conclusions?  Did I overmedicate Ed?  What could I have done different so we didn't end up in the ER?

It makes me feel so weird and anxious and sad.  I'll admit - selfishly - I feel really awkward that I put it out on Facebook.   I took everyone on this crazy ride with me.  I guess I wanted everyone to walk in to the ER with me; I wanted that virtual support.

I know this isn't about me, even though I write so much about my feeling toward this.  I know it's about Ed.  Lesson learned.

Now that we have two weekends at home, how the heck is Ed?

First off, he NEVER had pneumonia, like the ER thought.  :(    That was a fiasco.  But thank goodness for the no pneumonia.

It's so weird to look at.  How quickly things change.  Ed's in his wheelchair, sitting next to me.  Life has changed dramatically.  Even though we were together all the time before, I could leave him alone for an hour or so.

He was still independent in the sense he could move his wheelchair with his head. I wasn't worried about his breathing.  Even though he couldn't stand for any length of time, he could stand for a moment and pivot in order to use the bathroom or change clothes.  He could use his knees to tap buttons that allowed him to tilt his wheelchair.

Now, someone must be with him all the time.  If his legs fall off the wheelchair, he can't put them back up.  He cramps up a lot.  His head is tilting so his ear sometimes touches his shoulder. There is lots of massaging going on!

His breathing is good but his swallowing is bad.   Bad to the point he can't eat via mouth anymore. Everything goes through the tube, except water.   He choked on some medication to the point we both got scared.  Meds go through the tube.

Because the swallowing is bad, the coughing and choking gets bad.  It's random though.  Some days he's quiet.  Then out of the blue, he'll cough for hours trying to get up phlegm.  We've had a couple situations similar to the weekend that got him in to the ER.

One of the situations, he thought he was ready to die. He just kept telling me he was ready.  This time, though, I stayed off facebook.  I didn't wake up my parents.  I just held his hand and figured we got through the last scare, we'll get through this one, too.

After three hours of telling me he wanted me to carry him outside because he felt so light, he sort of snapped out of it and asked for a cup of coffee.   A third time, I was out running errands and an aide called me back home because of the choking.

Ed's decided not to use anything to help him breathe or to suction out the junk.  We go back and forth on this, especially when he can't breathe.  Imagine that.  This sounds good in theory.  Black and white.  When he's unable to breathe, though, we question that decision.

Every morning Ed wake's up, he smiles and says it's going to be a good day.  This is why I love Ed. He's comfortable.  He's warm.  Happy.  So this makes me really really happy, too.

Ed's home!!!

Wednesday 9/28 - 11:30 pm

This is CRAZY.   The last time I wrote here was 8 p.m. Sunday night.   We were wrapping our heads around the fact the we heard the doctor say Ed was actively dying.   Our hearts were breaking.  I guess we were thinking he'd die in his wheelchair, I had this vision he's close his eyes and just go.

Instead - even crazier - is that by midnight Sunday, I was screaming at a hospice nurse on the phone to MAKE MY HUSBAND COMFORTABLE.  He was still throwing up, he was still so miserable and hospice was not providing any answers.  None.  They were spinning us in the same direction over and over with the same results.  

They finally decided to send us to the ER.  The paramedics came at 12:30 and we were in the ER by 1 a.m.  

The goal was to get to the ER to stabilize Ed.  That was it.  Help him stop throwing up.  We started at 1 a.m. -- at 3 a.m. someone came in to our room and said "we think you have pneumonia.  So you want to be treated for it, right?"

Ummm.  Pneumonia?  How did our hospice nurse miss this?  How did we get from puking to pneumonia.  But ok.  Pneumonia.  Two hours later, Ed was rolled in to a hospital room and put on antibiotics.  Apparently we were no longer on hospice at this point because we said "yes" to getting treatment for pneumonia.

The whole hospice issue is a secondary issue that made me super crazy.  It just added to the insanity of the weekend.

I can't even remember the timing or what happened.  It's like this crazy blur.  I just have flashes of things.  The most vivid moment was Monday night, hearing Ed just say over and over and over he was ready to go.  He wanted to die.  I just held his hand, watched him breathe, scared to move because I might disrupt some electrical flow in his body.

Now I'm home.  He's in bed.  

What the heck happened???

A week ago, we knew he had a decline that forced us to face the tough decisions we might have to make soon.  But "soon" - at that time - was months away.  A year away?  A while.  

48 hours ago, we thought he was actively dying and had days to live based on what the doctor said and how Ed felt.

Yesterday, the nurse at the hospital said he's transitioning in to death.  

Today?  I don't know.  I have no idea.  I don't even really care anymore.  We can only get through today.

Our days ahead will be tough.  He is completely bedridden.  I realized this weekend I cannot take care of him by myself anymore.  

I can't type anymore.  I've been running on adrenaline, rage at hospice and the hospital, and giddyness that Ed's finally home.  The crash is coming on fast!  It's time for bed.

How did this happen?

Ed is actively dying.

These are the words the hospice doctor used.

What?  What????   How did this happen?  He's still talking, breathing, eating.  Just two days ago we were talking about plans for the winter.  How, in a day, is he "actively dying?"

I can't even remember the last 24 hours.

We went to sleep Friday night.  Me on the couch, about three feet from his wheelchair.  We leave a light on because the dark is too scary.  Sometimes we leave the tv on all night, too.

Around 4 a.m., he woke up yelling "help, help."  In the four seconds it took me to get up and turn on the light, he was passed out and not breathing.  I shook him, slapped him, yelled at him but couldn't get him to respond.  I remember thinking I'd taken CPR classes in high school - should I get his wheelchair back and do that?  Instead I ran upstairs to get my mom and dad.  When I got back downstairs, Ed was awake.  Breathing.  He had no idea what happened but he was really non-responsive, out of it.  Loopy.  Drunk.

Parents went back to bed, at 5 he passed out again and stopped breathing.  Within seconds, he was awake again.  But this time he was begging me to get him out of bed.  I told him you're in a wheelchair.  No - no - no he said, I'm 18.  I'm in bed, get me out of bed.

I decided to wheel him outside.  He looked at me and said "I know I'm 63.  I know I'm sick."  Just like that.  Out of the blue.

I called the hospice nurse.  I ended up calling her 5 times yesterday morning.   This is how we learned he has maybe 2 days.  He is actively dying.  In the active dying phase.

My heart hurts.  I keep rationalizing things.  I know I don't corner the market on loss.  On sadness. We've had this time to say goodbye.  To be together.  We've had an amazing two years of travel, warm winters, visiting family.  Of just being together.

For as much as I'm grateful, my heart hurts.  Ed is my rock.  How do people do this?  How do they go on???  I look at him and burst in to tears.  I have friends who've lost a child.  A parent.  A spouse. They have moved forward.  Ed's son died in 2012.  Only now can I appreciate the weight of that grief.

I feel like the sheer force of my love should wake him up, heal him.  Carry him through just one more week.  I find myself bargaining with God.   Just one more week, please?  But how would that make it any easier???

Do I feel any luckier he won't suffer through the horrors of ALS?  He'll die being able to tell the people in his life he loves them.  He hasn't had troubles breathing or eating.  He'll die peacefully.

His skinny little body is just so tired.  He doesn't feel good.  How do I make him feel good?  He doesn't want drugs, he wants to be lucid, he wants to tell people he loves them.  My goodness, though, I just want to wrap him up, hold him, have him fall asleep and just feel comfortable for a moment.

How do I do this???

update 8 pm Sunday night --  I wrote this earlier, around noon.  Around 4 pm, he called for me and said he was ready to go.  We'd talked to the chaplain earlier today, prayed with her.  He talked to his son.  He was really ready to go.

He seemed peaceful.  In and out, sleepy.  Ed and I said our goodbyes yesterday, in a way.  We talked about how lucky we were to find each other.  How much we loved each other.  We never fought.  We remembered healthy days.  Traveling.  We kissed a lot.  Cried a lot.

Today, he doesn't want to be touched.  He's tired.  I kiss him and he tells me he can't breathe.  I want to eat him up, wrap him up, never let him go but he can't be touched.  So I just sit and hold his hand. Since four this morning, he's been throwing up.  Everything.  Meds, water.  It's painful to watch.  I just want him to be comfortable.  At peace.

We've had a busy night.  Family over to say goodbye.  A hospice nurse stopped by.   She got him to try more meds - he threw those up.

Everyone is gone.  My sister is here, trying to get me to eat.  I came here for a short break. Wondering if I should post this??  Let people know what's going on.

Whether Ed dies tonight or tomorrow or next week -- I'm so grateful he's in my life.  He's a part of my story.  As selfish as I am to want him to fight and stick around, I want him to go peacefully. Knowing he's loved by so many.  Knowing what an imprint he's left on my heart and on so many other people.

I wish you all knew him like I do.  Kind.  Generous.  Super smart.  Forgiving.  Funny.  He was my cool cucumber.  My anchor.  How will I keep my feet planted on the ground without him?   When I met him, I'd ask him how his day was and he'd always, always say FANTASTIC!   No matter what. His glass was always half full.

I love him so much.  I will miss him so very much.  He is truly, truly the best thing to happen in my life.  I will keep my feet planted on the ground because of his love.

Card campaign!!

My handsome husband (on the right) being enlisted in to the Air Force.

Ed had a 20 year career that took him all over the world.

Thought it would be fun to share.




The reason for this post is to get all of you to send Ed a "we're thinking of you" card.

I got the idea from his co-workers at the State Police in Virginia.  They got together to send him a card.

Ed is always so uplifted when I read him FB posts - he loves hearing from friends.  He uses his computer as much as possible but he gets tired pretty quickly.

I thought that in this day and age when emails and texts are our usual way of keeping in touch, a good old-fashioned card would give him a smile.  And that is always, always my #1 goal.

Our address is:

Ed Cutchins
500 12th Ave NW
New Brighton, MN  55112

Thanks so much!!!

Last year in Florida, at the Hard Rock in Tampa. It was a fun trip!!

We aren't making the trip to Florida this year. That's definitely been sad.  We're grateful we have the memories from the last two winters.

Don't put off those things you want to do!!  Both Ed and I wish we would've traveled to 100 more places!

Life really is way too short.  So now, we're enjoying our time together in smaller ways.