There's no space for fear...

Sunday night.  Got home from the  nursing home about an hour ago.  The ride home is always rough. I get a good cry.

Ed's ok.  He's not really his "old" self.  At the VA, for a time, he was.  He was clear, lucid, smart. This was in November.  Even he said he felt better, more like himself, than he had in a long, long time. Now, at the end of January, he's just ok.  Weaker for sure.  But I'm trying to figure out him.  Usually I think he's here with me - pretty lucid.  Sometimes, though, I'm not 100% sure.  

It's little things like not remembering I was with him the night before.  Or if it's night or day. He'll wonder when we're going someplace but doesn't know where.  I try to be gentle with the fact we're probably not going anywhere anytime soon.  

We tried last week - when it was warmer.  We were going to see a movie but when I got to the nursing home, he was freaked out.  I can read him so well now.  He had those scared eyes.  I told him it was ok - we didn't have to go.  Maybe a movie was too big for the first outing.  Maybe we just needed to get him in the van and drive a block and come back. We didn't go to the movie.

Mostly, it's all good.  Like in this picture.  We sit next to each other.  I hold his hand - like I'm his anchor and I keep him from floating away.  

Around 6 pm most every night - when it gets dark - he has a panic attack.  I can tell.  We'll be watching the news and suddenly, he's agitated. Making noise, moving his toes. 

Within minutes, he'll be panicked, shouting to get off the blankets, turn down the heat, move his arms around.  

I try to anticipate it without making too big a deal of it.   Rub his legs, his hands.  Brush his hair.   In the end though, we always end up with an extra dose of anxiety medication.  Maybe we should just start with that.

Ed's vitals are good - his blood pressure is a little high.  His breathing is good.  His attitude is actually really positive.  Tonight, he got his catheter pulled out.  It was, at first, pretty painful and gory.  The nurse asked why we had it and honestly, I couldn't remember. Hospice shoved it in him back in September and that led to hallucinations and the trip to the VA.  I honestly think hospice did it out of convenience.  Once he got bedbound, it was too hard to use a urinal.  We never had the conversation, though, about why.  And we never revisited the why.

Tonight, the nurse decided to take it out; it seemed painful and tender.  At first, it was awful to see Ed worry about whether he was going to wet the bed, see him in pain as he peed, it was hard to hear him say he didn't want to pee because it scared him.  

A few hours later, he woke up and was smiling.  He said he felt soooooo good!  It didn't hurt to pee, he didn't feel like he was connected to tubes, he felt pretty free wheeling!  I had to laugh - it made my heart happy to know that's the old Ed... he's still in there.   

I want him to feel loved, secure, comfortable.  I think he does.  I hope he does. We both have a great support system of friends and family.  

Time is weird.  I feel it breathing down my neck, like I don't have much time left with Ed.  

Our time is so limited.  He could be here another year, maybe more.  How lucky I will be if he is.  

But time at the nursing home almost stands still. It's quiet, we're quiet.

I used to be able to share my fears, concerns, dreams with Ed.  But now, that's too much.  It overloads Ed's sensibilities.  Instead, it's all about the moment - being present with him, making sure he's happy, peaceful, content.  I keep my fears, concerns, dreams to myself.  I think I can deal with things later.  When there's more space for those things.  

Waiting...

This feeling, this lonely sad feeling is hard to describe.  It's consuming.  I think it's ok.  I've tried to push it aside, thought about re-engaging with the world.  But I can't.  I want to spend every moment with Ed.  I feel a shift in his demeanor.  Something is lurking around the corner.  I know it.  We've been through this enough in the last 3 years that I see the signs.

But what?  What's left for Ed to lose?  He's totally immobile.  He can't move his head anymore.  He can't eat anymore.  The next thing for him to lose is his voice.  The thing that's kept us connected for the last 3 years.  I get to hear that he loves me.  He can tell me what hurts, what he needs.  I've become obsessed this past week with what happens when he loses his voice.

We met with our speech therapist today to see what kind of technology is available.  We know there are programs out there which will allow Ed to "talk."  My worry is his energy level.  It's gotten harder for him to sit up in his wheelchair.  It's hard to use the computer in bed because his head doesn't move.  It takes a lot of brain power to concentrate on the program and sometimes, Ed just doesn't have it.

So what happens when he can no longer communicate?  I don't have the answer.  We're still working on the computer... we'll see how that goes.

I wonder if I'm being too negative?  Looking for signs that aren't there?  Whatever is going to happen just will happen.  I can't prevent it.  Even when I gear myself up for something, I'm still surprised when it happens.  Heartbroken.  How must Ed feel??

We're at a point where I can't really talk to him about it.  We used to.  Now he seems far away.  If you sat with him, he'd be fine.  Quiet, maybe.  Or he might fall asleep as you talk with him.  Lots of drugs, I think.   No energy.  Plus I don't want to talk to Ed about sad things.  I want him to feel love and happy and comfort.  I spend lots of time touching him, massaging his swollen, heavy arms and legs.  We don't talk much.  We did a crossword puzzle about a week ago and it made him anxious.

This is hard.  It's going to get harder.

I think it's ok to be this sad.  To mourn the loss of our relationship, the loss of having him here at home.  It's amazingly scary how easy the tears just flow.  Sometimes it feels good to let it out.  Other times, the sadness is too much.  I hope if I get it out now, when he dies, I won't have any tears left.

Added:

This is the question I just asked my online ALS group:

I've been thinking about this a lot the last couple of weeks. Our ALS doc discussed end of life with us way back when end of life seemed far off. Back in the day when we were worried about other stuff like losing his job or his legs. Our doctor said my husband has control over when he wants to die. He'd stop tube feedings. It's up to him/us - along with input from the doctor - when this happens. I keep hoping he'll just pass peacefully. And maybe he will. We have an advanced directive but it never included this locked in scenario. We're getting closer to it. He's completely immobile, recently lost use of his head. He's tube fed but he can talk. His voice is going. We're in the process of getting an eye gaze system. That being said, he's so tired. He's rarely in his wheelchair anymore. I worry about his lack of energy in order to use a communication program. I guess my question is - have you thought through this scenario? Once bedbound and locked in, what next? We've discussed some of it -- but not really pinning it down. Can it be pinned down!?? If he's unable to communicate, how will I know? Ugh. Tears. I hate this.


These are the thoughts that keep me up.

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.