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.

Happy days!

So here we are at the pool (Jeff and Noreen's pool!).  Luther, Mia, me.

We've had some great days.  A few lazy ones in there (like today!). Perfect weather. Nothing pressing on the list of things to do.



It was Luther's birthday last week. I made plans to take him to the Hard Rock Casino in Tampa.

We were both pretty jazzed because he'd get to take a shower.  Isn't that as good a reason as any to be excited about a mini-vacation!?  He can no longer use the shower here - he can't get in to it.  We "hose him down" - the 'ole sponge bath...  but it just doesn't feel as good as a hot shower!

<----- At the casino!

The casino itself was amazing.  The accessible room had the best bathroom ever.  Grippy, non-slip floors.  The bench in the shower was padded - an important detail for someone with such a bony butt. Lots of space for his wheelchair.

It's funny how your priorities change... in the past an awesome happy hour and a great restaurant were on the list of "must haves" in a hotel. Now, we look for tall toilets and padded shower benches.

Luther liked going to casinos until his hands didn't work anymore.  Problem solved!  I got him this stick he holds in his mouth.  It's for lots of things - pushing buttons on a remote, a calculator, a computer - and slots!  The thing I love about Luther is he doesn't really care what anyone else thinks.  He pushed buttons with this stick in his mouth and had a great time!

I got him this t-shirt blanket for his birthday.  When he moved in with me 3 years ago, he had all these worn out t-shirts.  I wanted to get rid of them but he said NOPE!  Keep in a bag, maybe some day make a blanket.

I finally did!  It's a great way to preserve memories - he was pretty surprised.



The usual stuff is still moving along. Luther doesn't want to eat.  He's pretty tired all the time.  The birthday fun, the casino - all of that tuckered him out for a few days after.  We're coming to the realization driving more than an hour hurts his body... thinking of the drive home is daunting.

But all of that just feels like the usual.  Lately, I don't feel too bogged down in it, which is a nice change of pace.

Life moves along.  Today it's moving along quietly.  Gentle.  It feels nice.

I'm going
to capture this feeling and bottle it up!

Tuck it away so the next time I get wigged out, I can remember what a lucky duck I am for having these moments.

Just a moment of normal

Last night, around 3 a.m., Ed was in his wheelchair, restless, itchy awake.  He sleeps in his chair now. He's in his chair all the time.  I woke up to rub his arms, scratch his ears, massage his shoulders.

He laid his head on my chest, which he never does.  I don't know why, I only know it felt odd.  I kept rubbing his skinny shoulders; he fell in to a soft sleep.  He woke up and said stop.  Just let me stay here like this for a little while.

I forgot what it's like to just stop for a minute and actually comfort my husband without it feeling like I was duty bound.  A bitter, frustrated, overworked nurse.

In the dark, his head on my chest, my hands resting on his shoulders, it was nice.