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.