I miss Ed

I haven't written here in a long time.  Not sure why.  In the past, it's been cathartic.  A release of all the sadness, chaos, anger held in my head. My heart.

Lately, though, writing feels too heavy.  A rehash of the shit.  Or maybe... I don't know.... I'm not superstitious but Ed's ok now.  If I write stuff, will I upset the balance??

Nah.  I'm just too tired to write these days.  Tonight, though, I'm restless.  Sad.

For the past month, I've been in this weird limbo stage.  Ha!  As I wrote that, it occurs to me - what am I saying?  This past three years has been life in limbo.  I guess what I mean is Ed's relatively ok after an awful three months.  You've been on this roller coaster ride with me.  How many times did I think he was near death?  And now, he's stable.  He's lucid.  We laugh, kiss, have good conversations, do crossword puzzles.  I decorated his room for Christmas.

Yep.  He's at a nursing home.  "Living facility."  A rehab / hospice center.  Really, it's a warehouse for old people.  It smells gross.  There are lots of odd noises.  Lonely people.  We really need a new system for elder care.  You just don't think about it until you get old, I guess.  Or have a loved one hanging out there.

Ed was checked in to the VA hospital in early November after an insane September and October.  He was in the VA hospital for a month wheb we realized it was going to be too hard to bring him home. The guilt I carry over this weighs heavy.   Who puts their spouse in a nursing home, for God's sake?  I did.

My parents were amazing during this couple of months leading up to Ed being checked in to the VA. Although we had home health care and hospice, 25 hours a week just wasn't enough.  I couldn't turn Ed by myself.  He's in diapers - we call them briefs but they're adult diapers.  Dad would turn him, I'd clean him.  Ed was out of it.  We were tired.  It'd try to get Ed out of bed by myself using the lift. This is a job that both the VA and the nursing home won't allow one person to do.  I just laugh about that now.

In September and October, I was shoving drugs in to him at a crazy rate.  Morphine, hydromorphone, ativan.  Crushing up pills because he couldn't swallow anymore.  Using liquid versions.  Even injecting him with these huge needles.  It was insane. I'd be up at 3 a.m. with no sleep, trying to remember what to give him.

A new nurse showed up every other day, changing his plan of care.  One day, another new one showed up and shoved a catheter in to him.  Uhhh - what?  Now what?  Three days later, his penis is infected and full of green goo and the hallucinations he had randomly in the past become ramped up to 24/7 within the week.

Clearly, being at home with me as his nurse wasn't working.

Ed was in the VA for the entire month of November.  The first two weeks, he was still hallucinating. The last two, he was back to the "old" Ed.  Funny, smart, totally in the present, making plans for the future.  It was then we realized I was back to the "old" Lynn.  I was his wife.  I remembered why I fell in love with Ed.  We both felt lucky we had this second chance.

Making a decision to put him in a nursing home wasn't that difficult when we looked at it objectively. The thing is, my heart isn't all that objective as I sit here tonight.

I miss my husband.  All of it.  I want him laying here next to me.  His arms wrapped around me.  I want to wake up with him, complain about how cold it is and see us both off to work. Instead, I'm alone.

Each time I leave Ed, I walk down this long hallway.  Out the door.  I get in the car and cry.  I usually spend 8 - 10 hours there.  Just sitting with him.  I've tried to spend less time there but it's hard to be away from him.  I keep thinking I should try to start finding more time for myself.  Lead a more normal life now that he's being cared for by others.  But that hurts my heart too much.  I'll have a lot of time for my "normal life" when he's dead.  Right now, I just want to be with him.

Maybe it's the holidays.  Maybe it's because, after a month of Ed being Ed, tonight he was in pain, he was more drugged up than usual.  Maybe it's because I'm lonely, sitting here in the dark, wishing I could feel my husband's presence.

Most of the time I'm grateful.  Grateful he's still here with me.  Grateful my parents support us so openly. Grateful for my friends and family who give me the space to figure this out.  Oddly grateful Ed has a disease that's given us time to say our goodbyes.  Given us time to create some really good memories.


I try to keep things in perspective. Lots of people have loss.  Are caregivers. Deal with things much worse than this.  Sometimes that perspective helps me stay focused on the good things in my life.  In our life.

Tonight though, my robot heart is weak and sad.  My skinny, sick husband is alone.  He can't move. He waits up to two hours for someone to respond to his call button.  He takes pleasure in eating jello. I wonder how I can be grateful for that?  I sit here, alone.  I can't seem to stop crying.  The depth of sadness and loneliness I have in my heart is too much.

Tomorrow's a new day.  Another day to hang out with him.  Fill my heart back up.

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.

Hospice. Poop. Passing out. The new normal.

Things are so weird.  Not good.  I want to be glass half full girl.  I want to think things are going to be ok.  I'm sitting here waiting for Ed to poop.  This is our life.  A 3 a.m. poop.  Our life revolves around this now.

I'm supposed to be thinking about getting him on a bowel regimen program.  This is where I'd be sticking something up his butt (my finger?  A suppository?) at the same time each day so he'd just go and get it done.  No more 3 a.m. worries.

Going to the bathroom now is about a 30 - 45 minute ordeal.  We just don't have this thing down quite yet.  The last time he went was Saturday and it was a MANUAL EXTRACTION.  It was horrible and we both cried and I tried so hard to make it be like it was just another thing, no big deal.

Right now, at this very moment as he's going, it's a frustrating nightmare.  Up, down, up down --- I don't want to stand next to him as he goes so I walk in to the other room but within minutes he needs me to do something.  This is how my entire day is.  Up, down, up, down...

OMG - so now it's 3:50 - we did the manual extraction again.  Bowel regimen is looking better.  The issue with this is you have to do it while lying in bed.  I can't get him in to bed correctly.  He's like a sack of potatoes I'm slinging around in this lift.  Ugh.

Ok - let me back up.  So you know he was in the VA so I could have a weekend off 2 weekends ago. This, for some reason, seemed to be the start of the next decline.  Neither of us think it was the VA stay itself.  The decline would have happened anyways.  But it was the stress of going down there, of the lift system

I can't even write.  I just cry.  So is Ed.   I'll just sum it up:

- Hospice

We started hospice Monday.  Unclear how this helps us quite yet.  It's only Wednesday.  Well... now Thursday.  So we'll see.

- Coughing

He can't get that junk out of his throat anymore.  We use this thing nicknamed a "pickle" or an accapella.  He breathes in to it then I do this "quad cough" thing - I press between his chest and his tummy to help him get the junk up.  This can go on for the whole hour (on and off) before it comes up.

- Anxiety / panic attackes

Ed's anxiety is through the roof.   He can't breathe, he can't move, he freaks himself out even though I'm right there.  He wakes up in the middle of the night, feeling trapped as if he's in a coffin, getting no air.

- Passing out

I'm not sure where this comes from.  The panic attacks?  Lack of air?  It's happened 4 times.  It happened tonight.  He'll call out my name, I go running to him.  His eyes roll back in his head but eyes don't shut.  His head falls to the side.  His mouth goes slack.

The last time prior to this one, it lasted 30 seconds or so.  I was slapping him across the face, screaming at him.  He wouldn't wake up.

When he comes to, he doesn't remember it.  He'll be very unfocused.  The 3rd one happened on Monday afternoon and all day Tuesday he was so out of it.  The nurse comes tomorrow and we'll discuss this with her.

- Unfocused

In general, Ed seems to be less focused.  He told me yesterday, he's having a hard time listening to me with the tv on.  Or, if two people are having a conversation around us, he can't stay focused. Sometimes when he looks at me, he looks right through me.  I'm not sure if I'm making more out of this than I should.  It's just different and it feels scary.

- Breathing decisions

So these passing out incidents lead us to the talk about breathing decisions.  Ed's "DNR" or do not resuscitate.  But that's for those big moments, right?  Like end of life, no quality of life times.  Not now.  Right????

He isn't using the breathing equipment he's supposed to be using.  He doesn't have to.  I think it's silly not to but I don't tell him this.  It's his decision.  But... what happens if he passes out, stops breathing or is gasping for air.  Do I just sit and watch that happen?  What are his wishes in those smaller moments??

- Pain

When you read about ALS, everything tells you ALS isn't painful.  This is WRONG.  He is in more pain than ever.  His knees hurt.  His legs hurt.  His feet hurt.  His elbow hurts.  His butt hurts.

He's on morphine as well as another opioid.  Now the Ativan.  Lately the pain bursts through the medication.  Hospice will provide us a massage therapist.  I've been stepping up the range of motion stuff.

This is getting hard.  If I'm scared and sad, I can only imagine how he's feeling.  And that's when I cry - when I see him hurting, scared, sad.

Everything changes in an instant

Not even sure where to start. This used to be a safe place to vent, to get the chaos out of my head.  It doesn't feel this way anymore.

Everything feels too hard.  I couldn't make a peanut butter sandwich earlier today.  The knife felt too heavy in my hand, the countertop was so sticky from something else, some sugar packets had fallen on the floor and that distracted me.  I couldn't cut the crusts off - it was too confusing in that moment.

But it wasn't the sandwich.  It was Luther.  The weight of what's been happening manifested itself in a stupid peanut butter sandwich.  I got over it in a couple minutes and fed Luther.

With ALS, you live life fairly normally and then BAM!  Something happens.  Like 8 months ago totally losing his hands.  Even though it really was gradual, it was just one day on the drive down to Florida, he looked at me and said, this is it.  My hands don't work.  We adjusted and then we lived our "new normal."

Well - something happened.  A bunch of somethings.  Big somethings.

1.  Total loss of legs

Prior to this, Luther's been able to stand.  Not for long but it made peeing and changing clothes easier. He could also do things like kick open a door, use his feet to tap a button.

One day, he just couldn't stand up anymore.  Now what?  It was a scary, freaky moment.  Now what the heck?  I was superwoman with the hoyer lift. And now we use the hoyer lift for everything.

Yup - this is a hoyer lift.  (It's not Luther)  It's become another piece of furniture.  Poor Luther. Long, skinny legs dangling from the sling.

He'll be all crunched up, dangling, butt sticking out of the bottom.  The first time I used it went fairly slick, although I did whack him in to a wall.

2.  Loss of core strength

This is a big one.  You know how weird Steven Hawking looks in his wheelchair?  That's a thing. ALS people lose their muscles.  Stomach and neck muscles, too.  This has happened to Luther.

Last week, he could lean over to get a drink of water.  He could move himself forward to itch his nose on a piece of equipment.  It made him feel independent.  It seems that in an instant, he lost this function.  He can't move anymore.

As much as I've been with him these past 2 years, I haven't been at his total beck and call. I've been able to leave for an hour.  I've been able to be in another room or outside.  Now, in the last 3 days, it's overwhelming.  For us both.

3.  Diaghragm strength worse / Breathing worse.  

With ALS, you lose the ability to swallow and cough.  Which then leads to not eating, not talking and eventually, not breathing.  This really hasn't been an issue, for which we've been grateful.  The fact we still talk, we eat together is a blessing.

Now, what seems in an instant, I have to put my hands, palms flat on his lower stomach and shove hard up as he coughs so he can breathe.  His cough is weak and sad.  We do this several time a day for several minutes a time.  Eventually he clears his throat and he feels like he can breathe.  After each time, he's wiped out.

Think of it like when you have a cold and that gross junk/snot gets stuck in your throat. That now happens constantly.  He can't get the junk up.  He can't swallow it, he can't cough it up.  It affects his breathing.

So the not being able to breathe is clearly the scariest.  At the VA clinic in early August, his breathing was at 50% - basically his lung capacity is at 50%.  He's been reluctant to use his bi-pap.  Said he doesn't need it.  That's partially true.  I haven't heard him having too much trouble with breathing... it's been a once in a while thing. Sometimes eating too fast would make him struggle for deep breaths.   Or if he got anxious about something.

In this past 3 days, suddenly, he just can't breathe.  At least once a day, he's gasping for air. We've set up the bi-pap but he can't use it.  He's so claustrophobic he has a panic attack with the mask.  This would've been a great reason to try using it months ago - just to know what the feeling of having on the mask felt like.  So here we are, I watch him, like a fish out of water, gasping for air and the mask freaks him out worse than getting air.

4.  Hyper anxious

Everything, everything is bugging Luther.  I know it's just anxiety and fear.  Once we settle in to these changes, as we have with every change in the past, Luther will settle down as well. I hope...

I try to put myself in his place.  How scary is it that he can't move anymore?  That his breathing randomly gets so shallow he's gasping for air?  That his dependence on me has increased dramatically in just a few days?

And yet, this hyper sensitivity to things like his eyebrows are touching his skin, there's a wrinkle in his shirt that's bothering him, his toenails feel weird... it's ALL weird.  In one hour I think I was up out of my seat 10 times adjusting his legs, brushing his hair, wiping his nose.

Earlier in the evening, he was outside smoking.  (yup, I know... no comments, please...)  All of a sudden he was bellowing, panicked.  He was frozen.  I got him calmed down but he was in tears. Scared.  I pulled him forward, rubbed his back.  Told him it's ok.  Just let him cry.  I couldn't cry.  Just held him until he stopped.

I got him inside but it was another hour of adjusting.  Fingers felt curled.  Shirt felt in "disarray" was his word.  Pant seams were out of whack.  They weren't but I pretended to adjust.  Was there a bug on his neck?  No.  But I scratched his neck as if there were.

We ended the night with me getting the wheelchair tools out because the chair didn't feel quite right. Nothing's changed.  Nothing.  But he knows it has.  So I take the attitude it has.  I'm not in the chair. At midnight, I was on hands and knees, flashlight in hand, allen wrench ready, trying to figure out exactly what the issues was.

So here we are.

Oh, and another thing.... Hospice called earlier today.  The doctor wants to make a home visit.  He explained it's just something to get ahead of.  Something to talk about.  He wanted to discuss what the next year might look like based on the last year of changes.

Hospice.  Even if it is precautionary, it bums me out it's on the radar.  I am super grateful the VA takes the initiative with stuff like this.  And that Luther's super open to talking about it.  But still... it weighs heavy.

Luther asked me to sleep with him tonight.  Generally, we sleep in different rooms.  Tonight, he asked if I'd sleep near him.  He's so fragile.  My heart breaks for him.  For us.

How do you convince someone they're not a burden?

Is it really any wonder I've built up this giant wall to prevent FEELINGS?  My wall has a moat to make it even harder to get in.  I'm behind the wall in a gigantic suit of armor.

Yeah yeah yeah, I know.  I know everything.  I do!  About feelings, anyways.  If I keep the wall up, I can't experience any true feelings, good or bad.  If I keep the wall up, I eat or drink or overindulge in some way that isn't really good for me.

But you know what?  I need this wall right now.  I cannot, I CANNOT feel this grief, this sadness, this frustration and loneliness.

I wish a part of me was awesome enough to put these feelings in to working out or taking walks or gardening.  Something more constructive.  At times, I do... I rally and get it together.  What choice do you have?  Feeling not awesome all the time gets old.   Plus I have this thing I have to do which is not letting my sick husband feel any worse by my depression.

The thing is, apparently I have.  OMG.  I can't stand it.  He said to me, in this heartbreaking way, that he hates being a burden.   It takes my breath away to imagine how he feels.  I just can't.

I dismissed his feelings with "you're not a burden" and left it at that.  Which, on my part, was not the best thing to do.  One of those feelings lessons I've learned is YOU GET TO FEEL WHAT YOU FEEL.  Me telling him he's not a burden negates his feelings.  I didn't let him talk about it.  I shut him down.  As if me saying "no you're not" makes him feel instantly better.

Tonight,  I talked to him about it.  He did admit that sometimes I say things that hurt his feelings. My heart cracks in a million pieces thinking this.  Words are so hurtful.  Sometimes they fly out of my mouth before I realize what I've said.  I do try so hard to stay quiet, to not let him see my grief or frustration.  Clearly, I haven't been doing a great job.

We have home health care now and that's different.  Ed begrudgingly accepts that I need help.  More for my mental state than physical.  I think he's a little hurt that I don't want to spend 24/7 with him.  I mean, he's stuck in this body 24/7.  He doesn't get to go anywhere.  He doesn't get any relief from ALS.  Why should I???   The home health care aid gets here and I pretty much run out the door.  He sits here for 4 hours with a stranger.

Guilt is a terrible thing.

Even writing this isn't helping me sort things out.  I think I'll just go hang out with him for a while and hope we both fall asleep early.

just a quick update - i got some sleep & Ed's ok!!

Posting updates at 4 in the morning isn't always the wisest idea.  I should make a rule to post only in the light of day!  I did feel pretty crazy.   A moment of thinking I wasn't able to take one more step.  I was so tired, so frustrated.  

One thing I've learned along the way is time will just keep moving and usually, the mood moves along with it.  The sun comes up, I take the dog for a walk, make Ed coffee.  You just get up and keep moving forward and suddenly, you aren't stuck in that same sad place.

So right now, as of 6:30 on Wednesday night, all is a-ok.   Ed's slept all day. I'm hanging out.  I got some time off this morning because a home health aide was here.  We really have no plans for the rest of the week, which is good.  

Time to rest, catch up on sleep lost over the weekend.

We have a clinic next week so I'll update everyone then on how he's been doing over the last 3 months.

4 a.m. sh^t show - a talk about poop.

I haven't written here forever.  What is there to tell you unless it's another bitchfest about how tired, sad, frustrated I am?

I'd like to tell you it's the same old same old.  In some ways, that would be good.  It would mean there was no change.

But here it is, 4 a.m. and the smell of poop is everywhere.  I can't get it out of my nose.  So of course, I have to tell you.  This insane frustration I don't know what to do with... if I talk about it here, it helps a little.

Something is off with the poop alarm that goes off in Luther's body. He has no idea if he has to go until he's going.  What the heck?  I've read over and over this is one of the only body functions that is NOT affected by ALS.

We are playing russian roulette with his legs... he can barely barely stand anymore.  He does to pee and to transfer him to the toilet to poop.

I finally fell asleep at 3 a.m.  This is a whole 'nother story.  I cannot, CANNOT sleep.  If I get 2-3 hours a night, it's a good night.  I'm unclear why.

There's a whole thing going on with menopause and hormones but I'm already discussing other bodily functions.  I'm reluctant to regale you with that, too. Needless to say, I'm 90% sure my body being out of whack is affecting my sleep.  Along with, you know... 100 million things swirling around in my head.

Back to tonight,  I've been asleep for all of an hour and I hear him shouting for me.  He has to pee.  It doesn't even occur to me to get him in to the bathroom just in case.  I can barely think.  He stands to pee, I hold a urinal and then he is all freaked out, crying about having to poop.  This has happened 3 times in the last 10 days.  I suppose I should be happy he's going.  In the support groups I'm in, I've heard a lot about manual extraction for constipation.  :( :( :(  I've had to do that once.  I guess that's a bright side?

I pull his pants back up, which are now... gross.  I'm telling him it's ok - it's just poop, we can clean it off, stop worrying about it.  I'm sure he feels everything that would go along with a grown man shitting his pants.  He wheels himself in to the bathroom, which to me is a feat in itself.  I have to circle around the long way to get to the bathroom and meet him there.  We count -  1-2-3 and lift him to the toilet.  This part is easy - he's like a skinny ragdoll.  I can maneuver him to the toilet AND take off his pants at the same time, only this time it's poop sliding in places it shouldn't.

The tough thing is - besides this mess this time - is how difficult it is for him to go.  I totally realize this is too much information.  Let's just say this whole process is one of the most difficult for me to deal with.  I have to stand by, waiting... and waiting and waiting.  It's like an awful metaphor for our life with ALS.  I sit by and wait as I watch him suffer and there isn't much I can do about it.  I just stand by and wait for him to tell me what he needs.

This whole bathroom thing takes anywhere from 30 minutes to an hour depending.

Man, I'm going to cry now thinking about the next part.  Getting him off the toilet is amazingly scary. We have to start using the hoyer lift - this gigantic contraption - taller than me - that will lift him from one place to the next so he won't fall.

The thing is, it's just a huge drag.  This sling will have to sit underneath him all the time.  I'm trying to think of a way to describe it.  Think of a six foot man sitting in a swing.  All hunched over, skinny limbs hanging out of the sling as I commandeer the lift to get him to the right place.

Yet again, back to the story at hand.  I have to lift him off the toilet.  Both our lives flash before my eyes as I do this - I am so scared he'll fall down.  He fell about 2 weeks ago when we were out and about, we were in a family bathroom.  Fortunately, I was standing behind him, holding on to him and he fell back on to me.

In this scenario, I'm standing in front of him, I hook my arms under him and lift.  1-2-3 up.  I can't do it anymore.  We are going to have to start with the lift...

So now I have him up - he's still full of shit - he can't stand, I'm trying to wipe him off - he's hollering at me to get the shower chair and we can shower him off - I run to get the chair (about 8 feet away) and he start hollering he can't stand anymore so I run back and tell him he's just going to have to deal with it.  My heart is breaking as I write this.  My man, my rock my dependable husband is now sitting in his shit and he's ok with it because he's so tired, he's so worn out, he's so defeated he just wants to fall asleep.

Life's been really weird lately.  This slow chipping away at the two of us. People tell me to get out there, do stuff.  Take online classes.  Go to the gym.  I tell myself this stuff.  Clean a closet.  Catch up on my reading list.  I can barely move.  I can't focus on a book long enough to absorb what I've just read.

We have more home health care now.  16 hours a week.  We've had it for about a month.

It's actually averaged out to about 10 - 12 hours a week because someone doesn't show, or they pull our aid because we're not a high priority case.

I'm grateful we've started it.  And yet, I'm not quite in the groove of having someone sit in our part of the house, just hanging out.  Luther sleeps a lot so most of the time, they just sit there in the dark with him.  There's not that much to do. They're here so I can leave.  Some days, though, I don't want or need to leave.  I'm sure we'll get a routine down one of these days.

Well - it's now 5 a.m.  What else can I tell you?  We have a clinic coming up next week so I'll give an update on Luther's status then.  For now... ??  I don't know.  Sleep feels elusive.

Up for the challenge??

I try.  I swear I try to be happy.  I know, I know, I know!  Turn my frown upside down.  Ok wait. See? Gotta run.  I've been summoned.

Ok back.

Perhaps this post comes from lack of sleep over the last two days.  Or menopause - this eternal sweating is making me nuts.  I don't know.  I can't seem to get over this feeling of boredom.  Apathy. Unhappy.

Ed's legs itch to the point he can't sleep.  Which means I don't sleep.  This has happened over the last two nights.  Nights are especially hard.  He gets a little anxious.  Restless.  He upped his night meds and has been sleeping better since March.  Getting 5-6 hours of straight sleep is gold!!

But the last couple nights have been up 'til 4, then back up at 6.  Long days of figuring out why the itch.  Tried Benadryl, cortisone, prescription lotion, some over the counter itch lotion that cost $12.99, warm wet compresses.  Everything provides relief for about 30 minutes and then the itch starts again.

We go to the doctor tomorrow to see what's up. We're wondering if it's coming from the inside - maybe the denervation occurring?  For months, those fasticulations in his legs have been crazy. That's the twitching from muscles trying to connect to nerves but the nerves are dying/dead.

Click on the video below - it's Ed's leg from last year.  You can see the fasticulations.

I told Ed I was tired of being his caregiver and immediately I felt terrible.  What a rotten thing to say. But it's true.  I want to be his wife.  His friend.  The woman he monkeys around with.  I grieve the loss of this relationship.  

Minutes after saying this, I apologized and he told me to put the foot rests up on his wheelchair.  He is laser focused on his little world, on himself, on his comfort.  I get it.  There isn't much else going on. 

I wrote 1000 other things but just deleted it.  

I am grateful for many things.  80% of the time, I'm content.  I do love being here with Ed.  

It's just that the feelings of grief and sadness and frustration come on so strong.  Adjusting to this new life is challenging.  

Most days, I'm up for the challenge.  Tonight, for a moment, I was not.  

I'm not cut out to be the cool cucumber

It's been an odd, odd day.  Quiet.  It's weird.  Time stands still and yet it flies right by.

Luther seems so fragile.  Really tired.  He doesn't eat much.

I've given up trying to be anything but the person who's with him 24/7, keeping him comfy.  No more cheerleading and even more to the point, no more bitchy nurse.

I just can't spend this time fighting with him to do stuff or eat or use his bi-pap.  It makes us both crazy.

My husband is dying.  This isn't supposed to be my life.

It's too hard.  I can't stop crying tonight but I do it alone.  Early on with this disease, Luther and I used to cry together.  It felt bonding.  Now, he doesn't want it - this grief.  He can't bear the weight of it.

I was out earlier this week with a friend.  We went out to dinner, went to a play.  I had this elusive "me" time.  Hard to get.  I know it's necessary.  I had fun but there was this underlying thing - like this cloud over me.  It's hard to explain.  (PS - thanks to my sister for staying with Luther... it's hard to find a "sitter")

I go back and forth between wanting a normal life - spending time with friends, getting away for a couple hours vs. wanting to be with Luther all the time.  Our time is limited.  One year?  Three? Doesn't matter if it's ten.  He's sick.  He doesn't feel good.  He doesn't really trust the outside world anymore.  I'm his connection to it.  I want to make him feel better or at least feel like our world here at home is a good one.  I don't want to be without him.  I don't want him to leave me.  I just found him.

This disease is awful. It's this slow, awful, relentless stripping away of everything.  The life we thought we had together.  The ability to touch, hug, hold hands.  He can't move. Everything hurts.

This constant weight of grief feels unbearable tonight.  Generally, it simmers just below the surface and I can keep the lid on it pretty tight.  Tonight, it's just too much.

I think part of the hurt is a realization Luther's changed.  His personality is different.  Remember I used to tell you what a cool cucumber he was?  My anchor.  Whenever I started feeling flighty or anxious, he kept my feet planted on the ground.  We were a pretty good fit.

Now, he seems to be turning inward.  I can't say selfish because it's not exactly that.  I just don't think he can see outside himself sometimes.  When I got home from dinner and a play with my friend earlier this week, he was so consumed with going outside to smoke, getting out of his blanket, getting his back itched, he wanted a snack.  I didn't fit in to the equation as his wife.  I was the person who was going to light his cigarette, feed him, put on his slippers, help him pee.

We don't have that husband/wife stuff anymore.  We don't smooch, we can't hold hands.  When I touch him, it's always in nurse mode.  We don't talk like we used to.  There's nothing to talk about except what's on tv, where he itches, what can he eat?

I grieve the loss of my best friend.  The loss of intimacy.  I miss my super smart, super calm and collected husband.  I wasn't cut out to be the cool cucumber.

I know tomorrow, in the light of day, I'll be ok.  I think I've done a pretty good job these last two years of being a good caregiver.  A caregiver cuke.

It's 3 a.m. - I can hear his wheelchair beeping - he's awake and restless.  I hate that he can't sleep through the night.  I better go see what's up.

Added later:  He was awake.  Needed his legs scratched.  His shin bones felt like they could cut me, he's so skinny.  After lots of itching, it was time to go outside and smoke.  It's 3:30 in the morning.

This isn't how things are supposed to be.

EDITED.  THE NEXT MORNING (as in today)  Ed is feeling really perky!  Up at 6 a.m., eating, chatting.  Yay!

The value of sitting still

Not much is going on.  I don't write stuff when life is kind of lazy and quiet.  I think it's because it feels like there's nothing in my head.

Which is totally not true.  I get a little restless when things are too quiet.  These days, I always have my nose in the phone or the tv on or am on the computer.

It's like I can't have a quiet moment. I need to occupy my brain every single second.  If left alone with my thoughts for too long, all that stuff starts:  when will Ed die?  what will it be like if/when he can't move?  what will I do for a job?  am I going through menopause?

Life is so weird right now.  We have these long stretches of time, just hanging out.  I was trying to line things up for Ed to do.  He told me to stop.  More and more I realize my expectations of what life "should" look like are forever altered.  I always think we should be doing something.  Anything.  Taking a walk.  Seeing a sight.  Heading someplace.

Ed doesn't really want to do anything.  It's too hard.  He's content being at home, watching tv, getting on to his computer, talking with me. He enjoys his comfort.

I'm realizing the value of just being here with him.  Slowing down.  I'm guessing I'll never have this kind of time on my hands again.

Once I accepted that life looks different and it's ok just to hang out with my husband, I then had to convince friends and family he isn't wasting away in the basement of my parent's home. Most of us are in the "ing" mode.  A verb state, I guess.  Doing, walking, reading, swimming, traveling...  we can't sit and just be.  I feel guilty or lazy or unproductive if I'm not in motion.

It's odd how quickly my brain shifts to the negative

These days, though, I'm getting used to this pace.  Naturally, those demons in my brain wonder what the heck I'll do when I'm required to re-enter the real world.  But I push those thoughts aside.  This is my real world right now.  I'm learning to appreciate this time without those demons screaming out the "shoulds" - you should be reading more!  you should be cleaning the closet!  you should get to the gym!

I'm finally making the shift to realizing this slow time is good.  It allows us to just enjoy each other. How great is that?

Yay for technology!

Happy news from the speech therapist - he said it in sort of a casual way - he told Ed he's slow progressing.  I'd never really considered it in that context.  But he still has his speech, he still eats normally.  As Ed put it - he's not dead... We'll take it!! :)  :)

We were at the VA yesterday getting hooked up with new technology when the speech guy said it.  They were trying to figure out future computer use:  would his voice go first or his neck muscles?  

Ed uses Dragon Speech on the computer - he has no hands to use a mouse.  It's daunting and amazing to watch.  He hollers at the computer:  MOUSE GRID.  8 quadrants come up across the entire screen and he'll say the number the corresponds to where he wants the mouse to go.  It sounds like a football game:  8 7 7 mouseclick!

Now, his voice is getting tired after an hour or so of this.  So we're getting this camera that follows a dot/sensor put on either a baseball hat or glasses.  It will follow Ed's head movement and the cursor goes where his head goes.  Pretty cool.

He's also getting his wheelchair rigged up to the tv, the lights and the fireplace.  Happy happy for both of us -- independence for him so he can use his head to change the channel, turn up the volume, turn on the lights or the fireplace.  A small return to wife status for me vs. robot ordered to change the channel every half hour.  Yay for both of us!  Yay for technology!  Super yay for slow progression!

May is ALS Awareness month.  The picture above is my niece, Molly, spreading the word about ALS.

 

Luther update: Learning the one thing we can control with ALS is how you die.

It's been six months since we've been to a clinic at the VA.  We had one yesterday.  A clinic is where all the doctors/specialists/therapists see us in one day.  One stop shopping.

Sometimes too much infois shocking.  It used to put me in overdrive.  A panic.  Even despair.  Now, when a change occurs, I feel battle-tested.  Ha!  Maybe battle-worn.

His numbers weren't good.  They measure 3 things:

1.  Weight
2.  Lung capacity
3.  Cough strength

WEIGHT

is down to 166.  When I met him he was at 225.  Prior to meeting him, he was at 260.

Losing weight in ALS is NOT a good thing.  You die faster if you lose a lot of weight.  Enough said.

LUNG CAPACITY

When Luther first entered the VA, his breathing / lung capacity was at 87%.  Now, it's at 53%.  He doesn't use anything to help breathe.  We do own a bi-pap but he hasn't used it.  I don't notice that he's short of breath but his breathing might be more shallow.  It's like having a yawn isn't satisfying because he can't take that deep breath.

If this number gets under 50, he should be using a breathing assist machine several hours a day.  This is not a trache/vent like you see Steven Hawking use.

Luther's decided not to be vented.  It's a big decision.

Selfishly, I'd like him to be around for a long, long time.   Without the vent, most ALS people die within that 2-5 year range.  Luther's coming up to year 3 this November.

I asked him to consider having that hole put in his neck and be hooked up to a ventilator that would breathe for him.  I want him with me!

Ultimately, I respect his decision NOT to have a tracheotomy.  At that point, he'd be totally eating through his feeding tube, not talking.  His breathing would totally be dependent on a machine.

Even as low as 53%, he seems like he's breathing ok.  Not shallow, not panting, doesn't feel air hunger.  The specialist said he will see the change as he gets under 50%.

COUGHING

So the  coughing thing is important because he needs to get that gunky stuff out of his lungs.  A healthy cough has a 500 rating.  Last clinic, it was at 227.  This clinic his cough strength is at 150. His diaghram has gotten really really weak.

This means he needs help coughing.  We have this machine that's a monster.  It weighs a million pounds, there's this vacuum-like tube hooked up to to a face mask.

You put the mask over your nose and mouth and it reminds me of having an octopus smashed on to your face, using those tentacles to suck breath out of you.  Luther hates this machine and won't use it.  My sense is he will soon enough.

Listening to Luther cough is frustrating.  His cough is soooo weak.  I want to smack him on the back to help him get it out.  If he doesn't get this gunk out of his throat, it can leak down in to his lungs and create an infection, pneumonia or choking.


<------ You decide!  Is the face mask just as claustrophobic as an octopus on your face!?

The speech therapist said a provocative thing:  that we can control how Luther dies.

In ALS there is no control.  None.

You have no choice that your hands no longer work, that someone else has to wipe your butt, that you can't get up and grab something to eat when you want.
                                                                                                                                                                                                 

 I've seen people fight that idea.  They do not want to give up driving, walking, working.  There's a gentleman in one of the groups I belong to who gets up each day to walk.  He should not be walking.  But in his mind, that's giving up.  He's broken ribs, ankles, a foot.

In my mind, acceptance isn't the same as giving up.  Acceptance means you can move on, enjoy your life, stop being consumed with slaying the ALS dragon and enjoy a steak or take a vacation.

So when the speech therapist said this, it was a little shocking.  You dance around the assisted suicide / right to die issues.  His example was Luther has a feeding tube.  This will extend his life.  Many many people choose not to get a feeding tube.  This will shorten their lives.  Luther does not use his cough assist or bi-pap.  These choices will shorten his life.  When it was put in that context, Luther realized that shrugging off doing some of the therapy was a choice that led to big consequences.

This idea of controlling death, of fighting a good fight, of how we choose to live with ALS - I think that's a whole 'nother conversation.

In the mean time, we'll just keep moving ahead.  What else should we do?  I'm familiar with the stuck place.  At times, I feel just as paralyzed as Luther.  The mental tiredness is heavy.

Today, I had a dentist appointment.  I almost fell asleep even as he was drilling.  You know how you jolt your body out of a light nap?  It shook me awake and the dentist thought he hit a nerve.

Nope  I was happily drifting off to some nap space because I was lying back in the middle of the day with no worry surrounding Luther.  It secretly felt pretty good.

Now that we're back in Minnesota, Luther is eating better.  He's chatting with me, helping me be better organized.  I like that.  It's like we're back to being a pair.  Partnered.

It's time to have a fun summer.

Here we are..

We're home.  Six days of driving.  We got home Sunday - today is Wednesday.  I'll probably be unpacked by Saturday...

It feels like Florida was a dream. Ok - ok - we missed the snow and the below zero weather.  But man oh man!  The four months we were there flew by.

First and foremost I have to thank my brother and his wife (Jeff and Noreen) for letting us stay.  It's their place and they're generous enough to let us be warm for the winter.

And, I have to thank my parents. They've gone down for a few years before us.  We showed up last year and invaded their snowbird space!  It's been such a blessing for Luther - his skinny body feels so much better in the warmth.

We wanted to stay through the end of May.  Mom and dad were leaving end of April and we'd stay a month for the extra warmth.

Luther got sick.

Not sick-sick in the hospital sick but back to not eating.  He threw up what he did eat then it came out the other way.  It was a couple nights of being up, trying to figure out how to stop the gap, so to speak. I was tired, he was weak.

I just knew I couldn't be in Florida all by myself with Luther.  I need help.  It was so hard to admit to myself, much less tell Luther I just couldn't do it.

I want to give him everything.  Keep him warm, make him comfortable.  His world is his wheelchair. He's in it now 24/7.  He amazes me - he's taught himself to sleep in it.  No pillow.  He's in the same position every moment of the day. He says he gets restless but it's mind over matter.  Or in this case, mind over body.

<----- From Disney, last year!

In Florida, he could roll outside, sit by the pool with the sunshine warming his bones.  There's a lot to see - birds, alligators, fish.  I'd spend time in the pool, he'd be parked next to the pool and we'd spend time together.  It was good.

When I told Luther we couldn't stay, it was a sad, sad moment.  It hurts my heart now to think of the look on his face.  He has no control over anything.  I try to make him feel like he does but we both know he does not.  Every day is a struggle to maintain energy, to find a way to be positive, to stay warm.

A month ago, he could stand up and walk a few steps.  Today, he'll stand but he can't walk.  I have to lift up his feet to put them back in to the wheelchair.

We decided to leave Florida with mom and dad.  That way, if we needed help along the way, they'd be around.

As much as I want to be grateful we're home in one piece, we missed the snow, we had four incredible months in Florida...  Luther is miserable and cold and tired.  Since we got home, he's been wrapped up like a burrito in his electric blanket and hasn't moved much.  He is eating - that's a good thing.

We're settling back in to Minnesota.  We're back home.  I'll keep him warm, try to keep him entertained and occupied.  We'll keep our Florida state of mind.