Sunday, May 31, 2015

Dignity. A few thoughts about brushing teeth, peeing and q-tips.

It's been a while since I've written anything.  Mostly because of the move.  It's never ending.  Poor Luther sits around all day waiting for me to run in and eat lunch with him then run back to townhouse to find yet another thing - old mortgage documents in a random bottom drawer, the leaf for my dining room table hiding under the bed, Luther's baseball cap collection.

We had a little mishap the other day.  He's got a yen for technical toys.  He has this monstrous 60" tv. 7 speakers, I think.  Lots of cable twisted up in spaghetti like fashion in the back of the tv.  Guess who got to untangle the cables?  Yup. Me.

He decided to come to the townhouse one last time to help me unravel the insanity.  It was rough for him to walk from the garage to the townhouse - it's a jillion step walk.  (Which is why we're moving)

We both totally forgot we had no furniture.  He can't stand for more than a minute.  So he tried sitting on the floor but he can't sit up, either, without support.  Holy cats.  He slid on his side then his back. He can't roll over without a lot of help.

In my husband's awesomely "let's get 'er done" way, we got the cable untangling done as he laid uncomfortably on the floor.  However, a half hour later, I couldn't get him up from the floor.  I had to call 911.  It was a bummer of a moment.  The police were great and super helpful but I know it was just one more thing to chip away at my husband's dignity.

Little things chip away - I can see it.  He won't say it.  He's too collected for that.

We have a new home health care person.  She is very careful with Luther.  The first time she walked with him to the bathroom, she held his hand.  He can walk to the bathroom on his own.  She stood behind him while he peed.  I mean really.  How would you feel having someone watch you pee?

We have a bidet at home but there are times I have to, ummmm, take care of matters back there. How would you feel having someone wipe your butt?

I don't really know how Luther feels about all this stuff.  He just takes it in stride.  He rarely gets upset or frustrated.  I'm sure he does but he just moves along.  I think his mantra is what can you do?

I mean check him out. Tan.  Smiley. That's generally how he always is.  Sometimes tired.  Or really really quiet.  But rarely angry or frustrated or mean.  Never mean.

He seems to get frustrated when I q-tip his ears.  Or brush his teeth.  I swear - brushing someone else's teeth is a drag.  I can't do it exactly right.

Whether it's having to pull up his pants after he pees or having my dad feed him or having me do all the heavy lifting when we make out -- every thing is a loss.  A slow chipping away at the man he was.

We're both new people.  Different.  This disease has obviously changed him physically.  But emotionally we're becoming different.  I never thought I'd love anyone this much.  I don't think I would've loved him like this if he wasn't sick.  ALS made me slow down.  Stop taking things for granted.  Especially stop picking on things that don't matter.

In Steve Gleason's quote above, he says "we can choose to focus on the beauty of now."  I read a similar sentiment from another guy who has ALS.  He called this a perfect disease.  He writes it sets your soul back to zero, your perspective changes, you get a do-over in a way.  The past doesn't matter.  Only now.

How do you see beauty in a terminal illness?  In diminishing dignity?  How can our past not matter? But it is true.  It's a choice on what we choose to see.

When I look at Luther, I don't see a skinny guy who can't move his arms.  Instead, my heart overflows with love and respect and I want to throw my arms around him and never let him go.  I see a man with infinite patience, unwavering kindness and a great sense of humor.

Our time is now. Life is too short.  The stuff we fought about, the annoyances and the hurts of the past are wiped away. They do not matter.  What matters is right now.

Tuesday, May 19, 2015

Clinic (Luther update)

We had what's called a "clinic" yesterday.  We see everyone in one day.   Dietician,  physical therapy,  social work, doctor, speech therapist.  

The biggest change was in his breathing capacity.  Last clinic his lung function was at 81%.  It's now at 61%  That's a 25% decrease in his ability to breathe.   I can't imagine what 3 more months will bring.

Remember that ALS is the degeneration  of the brain's ability to send info to motor neurons connected to spinal cord and then to muscles.  Your muscles waste away. 

There are two forms of ALS: bulbar and limb onset.  Bulbar affects swallowing,  speech and breathing.   Limb onset paralyzes your arms and legs.

Luther has limb onset.  He's gone from having a little trouble lifting his right arm to being in a wheelchair full-time over the course of 18 months.  

Changes in ALS people are generally subtle.  Even in the beginning when it seemed like we were hit with a ton of bricks but really, the official diagnoses took six months.  

We went from thinking he had rotator cuff issues because he couldn't lift his right arm as high as before to getting steroid injections in his back to wondering if he had Lyme disease.

For sure it's been a drag going from there to here.   But when you think about it, lots of folks are in wheelchairs.   You learn to adapt. 

He agrees that if we could freeze him now in this stage, we'd be happy.   He can talk to me, he still eats, he isn't drooling (don't forget your tongue is a muscle so it will eventually not function anymore which means you don't swallow all that spit and it just builds up all slimy and gunky in the back of your throat).

But this change - this 25% decrease in lung function - scares me.   From 81% lung function to 61%.  Still better than half, I guess...

The speech therapist is also concerned about Luther's ability to swallow:

-  Chewing makes Luther tired. 

-  He immediately starts  choking on crumbly food like toast.  He has a delayed cough/choke thing going on after eating every meal. 

It's a long explanation about food getting trapped in some secret vault in your throat at the back of your tongue.

You know when you swallow something that goes down the wrong "tube" and you start coughing/choking and your eyes water like crazy?  That's exactly Luther's situation after every meal. 

Sometimes it's just a little cough.  Other times I think I'm ready to call 911.  It's awful to listen to.  I can't imagine what it's like for Luther.

It seems the bulbar part is creeping its way in.  I've felt fairly safe in my ALS bubble because it's only been the limb stuff so far.  Bulbar onset generally means a faster decline.

Luther says he's not worried.   He didn't want to know test results and he says he feels fine. 

Mind you,  I'm typing this at 4 am because he woke up coughing at 1:30.  I had to get him up and vertical and once the episode was over, I put him in a chair to sleep.  He woke up at 3:30 and I put him to bed. 

He's thinking he doesn't even want to go to clinics anymore.  What's the point?   He feels how he feels.  He doesn't need numbers to verify where he is on the degeneration scale.  He knows where he is.

But we have to go to continue getting drugs and equipment.

We have a breathing assist machine.  Not to belabor the muscle thing but breathing is driven by muscular action.  Using this machine will help keep lungs expanded.

(Side note:  people have asked why Luther isn't going to gym to build up muscles if ALS is causing his muscles to waste away.  Luthers legs still work a little.  Plus his core. Why not do a few sit ups to build strength?  

It's because the brain isn't "talking" to muscles anymore.  Wouldn't matter if he went to gym,  the brain wouldn't be able to let muscles know what's going on.  Exercise tears or breaks down remaining muscle.   Plus there's a whole conserving energy thing going on.  Chewing makes him tired.  Imagine what doing sit ups would do.)

The speech therapist ordered a cough assist machine which clears the gooey stuff out.

Mechanical breathing.

Bulbar onset has knocked and let itself in.  He's an unwanted guest. 

The changes are subtle so far.  Enough to keep that undercurrent of fear close to the surface.

I guess it doesn't change anything in terms of our day to day.  Maybe being aware he'll get tired faster?   Doesn't matter, really.   Life goes on. 

Birds have started chirping! I just realized it's 5 am.  My alarm is set for 6:30.   See?  The day isn't waiting for us to figure this out, for me to catch up on sleep.   Best to put numbers aside and move along. 

Saturday, May 16, 2015

A year ago

I wrote this over a year ago.  I've come a long way in accepting this life.  My life isn't awful, like I thought it was a year ago.  My life is different.  It's difficult but (usually) wonderful.  I've learned so much in this last year about love, moving forward, being grateful, keeping things in perspective and what's really truly important.
I told Luther when he first got ALS that I didn't think I could live up to this illness.  I feel the weight of it every day.
I'm back to square one.  Actually BEHIND square one.  I'm not a decision maker, not aggressive, not organized and linear.  I met Luther, a large and in charge guy and wanted him to be a partner in my scattered life.  I asked for his help in getting me back on the straight path, rather than running circles over and over, all by myself.  
Unfortunately, now I feel like I'm alone again.  Chaotic. Uncertain. This life I waited for so long has blown up in my face.  There are days I can't get off the couch. I can't pick up the pants I just took off.  I keep the blinds shut.  I don't do much with friends anymore.  I forget everything.
The other day, I was at a stop sign. Down a block ahead was a stop light - the light was red. I sat at the stop sign, waiting for the light a block away to turn green.  I didn't realize what I was doing until a car behind me honked.
My brain is on overload so the rest of me shuts down.
I'm not looking for anyone to FIX anything. Getting it out there, just getting it out of my head sometimes, feels better. Generally the moment passes and we're on to something different.
ALS sucks. it's a scary disease. I get mad at my guy for not being able to do stuff.  I should rephrase that. I get frustrated with the disease.  It's heartbreaking.
I try to rally at times. mostly I do... I have to for both of us. I've shut down physically. It's been over a month since I've shaved my legs. Frankly, the thought of being intimate makes me feel weary.  That makes me really sad.  Part of this has to do with the fact i haven't shaved my legs in a month.... I haven't taken care of me.
I should be clear, I feel very much in love with Luther and when I look at him, when I'm with him, I think he's the best ever.  It's more me - trying to make me feel like I can be his wife.  I can be anything more than a robot nurse/fake cheerleader.
Part of it has to do with the fact I'm in caretaker mode so much.  I know i need to let that go. I want my guy to know he's still wanted and loved. 
It feels all too complex when really, it should be so so simple. Make every day a good one. It's cliche but it's super true. 
 I try to make each day one that matters. I fail a lot, sometimes because of circumstances - work keeps me away.  Plus the whole can't move, can't get off the couch thing keeps me bogged down.  Clearly it's my my mood... but I keep the mantra in my head because I don't know when he's doing to die.  When he'll be taken away from me. Every day needs to count.
Haha.  I can't figure out why some days i can barely string a few words together and the thought of typing anything, the thought of moving or thinking is too much.  Then days like today I spill it all out.

Tuesday, May 12, 2015

Well that sucked: caregiver failure.

Tuesday 7 a.m.

I woke up around 5 to go downstairs and get Luther up.  Early morning bathroom break.

The three level townhome routine is I put him back to bed, I go back upstairs and we sleep 'til 8 or so.

I'm up on the third level.  Usually I'm on the second level, sleeping on the couch but the couch got moved to mom and dad's.

This ghostly moaning reached me up there around 6:55 - it was Luther shouting for me.

I ran downstairs and he's in major distress, screaming he can't breathe and that he's been screaming for me for the last hour.

Before I got him up (I have to hug the back of his head and get him up sideways), I told him he could breathe and to relax.  Wrong words.  GET ME UP GET ME UP he shouted.

So I did.  It took him several minutes to catch his breath.  Then he went outside and smoked.

I'm up here now, venting.  Feeling guilty.  Pissed off the first thing he did AFTER NOT BREATHING FOR AN HOUR was smoked.  Feeling guilty.

Tonight I guess I'll sleep on the floor on the second level.  Maybe I'll build a fort and hide out under the covers for a while.

Off to make coffee, feed my husband.  No time for guilt.

Monday, May 11, 2015


Midnight.  Monday night.  Luther's downstairs, in his hospital bed.  He's really down.

The only smile I got from him today was when I was helping him out of his chair and his face got smooshed in my chest.   Small joys, I guess.

We're stuck in this limbo of moving!

It's rainy and cold.  He had to go up to the garage today.  Walking is hell. He takes little steps and one at a time.  So he takes a step, brings his other foot to the first one.  Almost like a bride walking down the aisle. Slow and deliberate and tiring.

We were over at the new place (at mom and dad's) checking it out. We're looking forward to being on one level.  This morning I got up at four a.m., down two flights of stairs to see if Luther needed to get up and use the bathroom.  He did.  He'd been awake for a while, the covers had come off.  He was cold.  He can't pick up the covers.

Tonight, as I was putting him to bed, his fingers got curled up under his hand and he couldn't straighten them.  Can you imagine?  I had to uncurl his fingers so he felt more comfortable.  He can't roll over.   Lie in bed, pretend your arms are dead weight and can't move.  What if you roll over and your arm gets stuck under you?  Your covers come off and you can't reach them?

Once we're on one level, I'll only be ten feet away.

In Florida, we slept together.  I could just reach over and move his arms or shove him over or cover him up.  But he missed his hospital bed.  It moves all the time to prevent bed sores.  He used to be able to grab the remote and lift his head up which allowed him to get out of bed.  Now, he can't grab the remote.

I'm not sure why all this is on my mind tonight.  I feel a little guilty he's stuck in this chair all flipping day.  I worked a little bit in the basement cleaning out closets so we hung out together for a little bit. Ate dinner together.  But mostly I was up here, cleaning.  Packing.  He's stuck downstairs.

I want our life back.  Well.  We can't have our life back.  I want a life on one level back.  I'm trying to figure out how to interact with him and get everything done.  In Florida, we had all this awesome time.  Was that real life?  I keep saying it was this dream world.  But why can't that be our real life?

I can't leave him stuck in the basement, even if it's just for the next week.  I have to figure out a way to get out of this limbo and put a smile back on his face.  This weather doesn't help.  I get caught up in packing, cleaning, running errands.  I need to get caught up with Luther.  Life really IS too short to be crazy with moving, tired from cleaning, crabby from the rain.

Tomorrow I'll bring back a Florida state of mind!!

Sunday, May 10, 2015

Life on one level.

Cool t-shirt my cool niece, Molly, is wearing!

One of the best things about living in Florida for the past three months (besides sushine, being warm, no snow, Key West, Disney World, awesome sea food, did I mention no snow?) was living on one level with an attached garage.

Right now, we're in a three level townhome.  As I type this, I'm on the middle level.  He's in the basement (lowest level).   

So he's sort of stuck in his chair until I go get him.  I check on him every half hour or so but yesterday I kind of forgot about him.  Not really but I felt like it..... I ran an errand, got stuck doing some stuff and didn't return for two hours.

Poor guy was just immobile in this lazy boy for two hours.  While I think hanging out doing nothing in a lazy boy for a couple hours sounds great, this is Luther's life at the moment.  It gets unbelievably boring.

If you think about it, he doesn't MOVE while he sits there.  He can still fling himself a little bit, so if he's set up just right, he can get a drink of water.  Unless the straw floats weirdly to the other side of the glass, then he's cooked.  

Our garage is like nine miles from my townhouse.  It's pitiful.  I always wonder what I was thinking when I bought the place.  Like I'd never have to carry groceries in the rain or snow down this million stair sidewalk.  Luther leaves his wheelchair in the garage and walks down these treacherous steps and pretty much stays plunked downstairs until it's absolutely necessary to leave the house again.  

In Florida, he just rolled out the back door to the pool.  I didn't have to run up and down flights of stairs to check on him.  In Florida, he could roll right out the front door to take a walk (roll).  It was just a few feet to get to the car.

Here, he has to muster up the strength to walk up the stairs to the garage to get out and about. Once he's walked up (then down) the stairs, he's pretty much done for the day.   Plus the whole legs won't work one day thing.  I think we're getting closer to that day.  

So now, we are finally finally moving in to mom and dad's house!  We can't wait.

First, I have to take a moment to say thanks thanks thanks to my parents for giving up their basement to let us live on one level.  I'm not sure how many folks would say sure, we'll be happy to give up part of our house, live in dust with frustrating contractors and let their 50 year old kid + hubby move back home.

I will say, it's not like we're living in THE BASEMENT.  It's been renovated and looks great.  Sort of a "mother-in-law" style pad.  

I've moved a bunch of furniture. More goes today.  It's such a big limbo.  Part of it is getting Luther's bed moved and then me moved at the same time.

Luther can't get out of bed and all that jazz by himself.  So he's stuck here (in my basement!!) while I pack pack pack until the bed is moved (hopefully this week).  

It's going to be so great being one one level.  I'm off to check on Luther and pack more.  

Monday, May 4, 2015

Sick Sicker Sickest

Sitting here alone, in the house.  We got back late Thursday night.  Today is Monday.  Or did we get home Friday?  Doesn't matter.  It all runs together.

Mom and I just dropped Luther off at the VA.  Feeling a little guilty for dropping my dog off at the boarder....  Ugh.

Backing up a bit - I got sick on the second to last day of trip.  I felt the moment it happened - some rogue viral microbe got stuck in my throat when we were at a rest stop.  I felt it lodge and started coughing.  I had a day and 1/2 left.  It's like my body knew I had to keep it together in order to get home.

It was Thursday night we got home.  Late - maybe 8:30 or 9.  We crashed and Friday morning I couldn't get up.  Yuk.  Coughing, hacking, sick sick sick.  Saturday and Sunday my sis, mom and dad pretty much took care of Luther in terms of feeding him. I could barely lift him up out of his chair.

Finally today - Monday - I called the VA and asked if I could drop Luther off for a few days.  Like checking him in to a hotel?  Except with hospital food.  They said sure, bring him down.

So he's dropped off.  Checked in.  I couldn't even smooch him goodbye.

Back to bed, time to get healthy so I can bring him home.