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!