The day before therapy post. What is left to say?

Ugh.  I've sat around all weekend, alternately freaked out that Luther was sick and pouting because we didn't get to go to the Twins game OR to Chicago to see U2.

Here it is Monday.  I had a lazy lazy day.  Luther tried morphine again today - we weren't sure if that's what made him sick.  Plus:  it didn't make him sick.  Minus:  it made him woozy and really out of it.

I don't know what this is.  This malaise.  Isn't that a great word?

malaise: a general feeling of discomfort or unease whose exact cause is difficult to                   identify.   unhappiness, unease, discomfort, melancholy, depression, despondent

Hmmm.  Maybe malaise is too strong.  I just don't wanna do anything.  I'm trying to grab the bull by the horns and all that good stuff.  My arms feel too weak to grab much.  Ok - that's dramatic.  I guess I'm just adjusting to accepting this new phase.  This new phase of not being able to leave.  To plan. Or if we do plan, it has to be planned to the letter.

Part of it is that we're not going up to the family cabin for the fourth of July.  Here I am, finally not working - which is the thing that's kept me from going for so many years.  And now, we can't go because it's not accessible.  We went up Memorial weekend and it was really uncomfortable for Luther.

No baseball game, no road trip, no 4th of July with family.  It's a lot to realize in the course of a week.

I'm sure we'll settle in -- I'm sure I'll figure out this is just fine.  We plan smaller things, closer to home.

Last week at therapy, the therapist was somewhat amazed my thoughts seemed organized.  I guess that was a nice week.  I just don't feel so put together this week.  Things fell apart and I just wasn't quite ready to rebound.

Cliche to end the blog with?   Hmmm.

Tomorrow's a new day.
Always look on the bright side
Happiness is a choice
Lemons... lemonade??  with a little vodka!

Tomorrow's a new day.

It's been a weird week.

A few posts back, I talked about waiting for the other shoe to drop.  How ALS is this odd disease where something awful happens like you realize you can't get out of a chair anymore or feed yourself.  But then you adjust to that awful thing and life skips along and we skip (he rolls) with it, trying to keep up.

Life's been pretty routine these past few months.  He lost the use of his right hand but could grip just a teeny bit.  Gripping the tv remote and pushing the wheelchair joystick were doable.  He could pull down his pants to pee.

This past week, something changed.

You know how we're all supposed to live each day like it's your last?  Dance like no one's watching?  I find myself torn between wanting to crawl under the covers to make all this go away plus the tired factor vs dancing the day away in order to entertain Luther.

Generally, the day falls someplace in between.

I bought tickets to see the Twins play baseball.  It was an afternoon game - I figured traffic would be ok.   Nice summer day, outdoor baseball, great people watching.

No go.  Luther got sick.  The picture above is from the VA.  The game was Wednesday and he woke up Wednesday morning, throwing up and coming out the other way - all darn day.  Plus he was uber tired.  He couldn't keep his eyes open.

Thursday we took him to the VA and he spent the night.  He was so dehydrated, they couldn't find a vein.

Sitting with him Thursday night, it was really truly the first time I thought about him actually being dead.  This whole dying thing is an idea.  A thought, not a reality.  Some thing that will take place in the future.  He was so weak.  So tired.  The nurse came in and said "you're DNR and DNI, right?"

Do not resuscitate.  Do not intubate.  I've heard those words before.  We've discussed them.  But those words are for way down the road.  Not right now.  I sat there, frozen.  This giant lump in my throat.  I didn't hear anything the nurse was saying.  All I could think about was what if... what if? What if some flukey thing happened and his heart stopped.  They wouldn't bring him back to me? He's fine.  He still talks, eats, gets around.

It's so weird - thinking about these huge things when all this other stuff is going on.  When is the right time?  When you sit down and think about all the death options, it's hard to wrap your head around what could happen.  Of course, I don't want him suffering.  Quality of life and all that.  But his quality of life is A-ok right now.  Shouldn't there be an equation you could apply to each situation? The value of DNR / DNI is equal to x.  X being the current state of health.

It was too much.  I had to rally and set all this stuff aside and focus on the moment.

Took him home Friday, he seemed so much better.  Ate lunch, he was alert and ready to rock.  I was relieved.  Then Friday night rolled around.

Last December, we decided to get tickets to see U2 in Chicago.  It would be me, Luther and my sister.  Ann - my sis - and I have seen the band many times and we saw them a few years back in Chicago.  We thought a road trip would be great.

Wed/Thurs the trip was touch and go.  We all sort of accepted the fact we might not go.  Then Friday rolled around and he was great.  Jazzed to go.  We all did a happy dance and didn't care who was watching!

Friday night, around 6'ish I decided to run a few errands.  Get the oil changed.  Mundane stuff. I can usually leave Luther for a few hours, once he's settled.

I got home after 8 and he was in the bathroom.  On the toilet.  With his pants on.  He'd been sitting there for almost 2 hours.  It was awful.  I'll spare the gory details.  Let's just say my life is ruled by poop.  I can't leave the house until he's pooped.  When I do leave, I have to make sure there isn't more to come, so to speak.

I understand that other people who are in wheelchairs deal with this issue. It's not like this is some special thing to ALS.  It is something new for me, for us.  Learning to set aside the embarrassment that comes with stuff like poop.  It's a private thing, right?  It's about dignity.  Not anymore.  It's just another thing.  It has nothing to do with Luther's dignity.  Or mine.  Wiping his butt is just another thing like giving him meds.

Fast forward to today.  No concert.  We had to cancel.  Luther's in bed.  His body is still doing gross stuff.  He's so tired, so weak.

The other shoe has dropped.  The little grip he had in his hand is gone.  He can't be left alone anymore.  Planning is a thing of the past.  That bucket list just got smaller.  These changes are heart breaking.  It's hard to watch him fade away.

Do not resuscitate?  I want to rethink that whole thing.  I want him here with me.

Tomorrow will be a new day.  He'll feel better.  We'll set our sites lower in terms of baseball games and road trips.  Just being together is enough.  Doesn't matter where we dance, as long as we're together.

Morphine and therapy and love, oh my!

Tomorrow is therapy.  I've been seeing this therapist pretty much since Luther was diagnosed.

Many times, I have no idea what to say.  Same stuff, different day.  A lot of times the conversation spirals out of control, looping from one thought to the next.  I give him credit for keeping me reigned in (at times).

Last Tuesday, he felt like I was the most coherent I've ever been. Hmmm.  Wait - let me rephrase!  I was talking in a more linear way.  My thoughts seemed more put together.  I don't think I'm suddenly this organized thinker!  What changed? I wrote in this blog before therapy.  I figured I'd give it another whirl and see if it helps.

Luther's in a ton of pain.  9 out of 10.  It runs from his bony butt down his thigh in to his calf.  I always say it's the ALS.  Of course he's in pain.  All his muscles, his padding is gone.  So his bone must push against his skin, his nerves.

We made an appointment to see his doctor.  It was interesting because the physical therapist thinks he aggravated it somehow.  In my layperson's brain I was thinking, umm yeah.  He's sick.  ALS aggravated it.  The way she described it though, made sense.  Like anyone with a muscle/nerve injury, you have to work on it.  Stretch it, massage it, ice it.

So we'll step up that stuff.  I don't mind rubbing on my husband at all :)  especially if it makes him feel better.

His doctor doctor (not physical therapist) put him on morphine.  It's slightly worrisome because it's such a strong narcotic.  She said eventually he'll get used to this level and he'll need to up it.  My feeling is we'll worry about that when the time comes.

He took the morphine when we got home and man, was he happy.  He had this floppy grin most of the day, which was great to see.

He lost five pounds this past month.  That isn't good.  When I met Luther, he weighed around 220. He's down to 178.  My tall, skinny guy.  I have to up the massages and now, I have to up the tube feedings to get additional calories.

So what will I talk about in therapy tomorrow?  This doesn't feel like it's helped clarify much.

I just typed a whole bunch of stuff that was even less clear so I deleted it.  It's late.  Luther's rolling around in his bed - time to check on him,

At times, my heart bursts with how much I love him.  I get scared of how powerful that feels.  Maybe it's just being scared of the thought of losing him.  People have said to me, we all die, I could get hit by a bus tomorrow.  Yep.  True.  The difference is we all KNOW Luther is dying.  He wastes away in front of my eyes.  He's in pain.  Our lives have fundamentally changed because of ALS.

Awkward segue because I don't know what else to say:  the picture above is a lyric from "Beautiful Day" by U2.  I first saw this band over 30 years ago in a small theater here in Minneapolis.   This weekend, Luther, my sister and I are driving to Chicago to see them again.  How fun is that?

Waiting for the other shoe to drop

4:30 a.m. - Thursday.  Luther slept with me last night (yay!) because his hospital bed developed a leak.  Like a waterbed but an airbed!!  There's a huge dip in the center.  He's already up, I'm up too.

It got me to thinking:  ALS is a weird disease.

For sure it's a mystery disease since there hasn't been any advances in the last 75 years.  No treatment, no medicine, no remission, no cure.  I can see how it is hard to find a test group to study. Every single person is affected in a different way.

The weird part comes in because of the sense of normalcy settles in. What I mean is something happens - arms get weak.  Hands stop functioning.  Legs now weaker. Arms now useless.  Coughing gets worse.

In between each of the things I just listed is time.  A span of time where we get used to the change and learn how to live with it. A false sense of the new normal occurs.

Each new normal seems to last several months.  We settle in to a routine.  There's always, always a sense of looking over my shoulder, though.  Waiting for that other shoe to drop.  What will the next change be?  Will I see it?

The shoe's dropped.  The next change has occurred.  The "tone" of Luther's cough has changed.  Is this a big deal?  It didn't seem like it at first.

I've talked about this before, but just a little ALS refresher:  ALS attacks your muscles and nerves. Once the nerves die, they no longer talk to the muscles.  The muscle then stops working and wastes away.

(Weird side note:  as the nerves die off, they twitch like crazy trying to find the muscles they're supposed to be talking to. It's crazy watching them under the skin.  Like drunk ants are running through his veins.  Once the twitching stops, the nerve is dead and the muscle won't work and begins wasting away)

The tongue is a muscle.  The throat has muscles.  This is how you talk and swallow.

For people with ALS, they lose the ability to do both of these.  For Luther, this has been a slow process, which is awesome.  Lately though, this cough thing has me worried.  The spit you usually just swallow without even thinking about isn't swallowed so easily for Luther.  This means it gets backed up in his throat.  Have you ever had a cold and you can feel that junk draining down the back of your throat?  Ugh.  This is what it's like for Luther.

Before, he would cough it up.  Now, he can't anymore.  He coughs like crazy, trying to get it out and he can't.

We've ordered a cough assist machine.  It's this contraption you put over your face, it blows a huge puff of air in to your lungs then immediately forces that air back out of your lungs, taking the mucus out with it.

The last change I remember was the loss of his right hand.  His arms/hands now hang at his sides like dead weights.  We got used to that.  The loss of strength in his legs has been pretty gradual.  He's weaker but he can still walk to the bathroom.  I have to get him up, out of chairs or out of bed.  At some point (he's guessing 3 - 6 months, but who knows?)  I'll have to use a lift to maneuver him around.  We have the lift.  It's a big 'ole thing.  It's tucked away for now.

Am waiting for the cough assist machine.  Wish we had it now.  It's awful to listen to him cough.  It's odd though, his coughing is actually less.  He doesn't cough as much as he used to.  It's just that when he does cough, it goes on for a longer time and sounds more forceful.  Grosser, to be honest.  And more painful for his lungs and throat.

Ok - I've been up rambling about coughing for the last half hour.  Back to bed for a while.

Update on rotten mood from last post:  You know?  Life just goes on.  My brain still feels a little fuzzy.  A wave of tiredness will wash over me like nothing else.  But I just plunk along and eventually, that moment subsides.  It doesn't seem to go away but it's lurking in my toes instead of my entire body.  The perspective that gets me out of bed and keeps me moving forward is I have to take care of Luther and I'm here to make his life comfortable and as happy as possible.  It forces me out of the funk and in to reality.

Life moves on.

Full out robot mode

I should:

- feel grateful
- choose to be happy
- stop feeling blah
- stop eating oreos
- pull myself up by the bootstraps
- live life to the fullest
- make my dying husband happy
- pull on my big girl panties
- get over myself

should should should should should should should should should should

Nothing particularly awful happened today.  Nothing much happened today at all.  Luther slept most of the day.  He isn't feeling the best.  I didn't do much, either.  Hung out.  Did laundry.  Ran a few errands.

So why this frown, clown??  Why this shield of armor around my feelings?  Why do I feel the need for a cape to summon my super hero skills?  It's as if every step, every thought, every minute is in slow, tired motion.

Maybe it's just a down day and I should roll with it.  I don't feel scared or anxious.  I was going to say numb but honestly - and this is really really hard to say out loud - I feel resentful.  My therapist (who I see tomorrow) will tell me I'm allowed to feel this.  I'm not allowed to stay in this moment forever.

Why resentful?  My life is not my own.  Every thing I do is based around taking care of Luther.  I get it.  In my head I completely understand this is an extraordinary situation.  (I wrote "temporary" but that made me cry)   Although I get it, at times, I can't accept it.

I just wrote a whole bunch about sleep schedules but it's redundant.  My entire life revolves around Luther.  99% of the time it's good.  I was afforded the luxury of quitting my job to stay at home with him.  He's my full time job.

We are best of friends, we get along famously.  He laughs at my stories.  He is ok with me leaving for a little bit to have some "me" time.

Every so often, though, like today, I have a twinge of sadness for a life I don't have.  I feel a sliver of anger that ALS has taken away both Luther's and my independence.

Should is a terrible word.  Guilt is a rotten feeling.  Anger toward things that cannot be changed creates resentment.  This negative space is not a good place.

Tomorrow's a new day.  We'll see how it goes.

Cold Feet

Below is a post from a woman whose husband has ALS.  He's in the final stages of this awful disease.

She writes about having cold feet, in both a literal and figurative way.

Luther is usually always freezing.  Sometimes his skin is actually cold to the touch.  So I get the literal part of this post.

In the figurative sense, we haven't experienced friends or family getting "cold feet" and leaving us at the aisle, so to speak.

We've been super fortunate in our ALS journey in terms of having the people in our life stick around. Our family and friends have been very supportive.

Here is the post.  It's long but it's worth the read if only to get a sense of what it's like to have ALS.

Cold feet.

Literally. Roger's feet are often cold. There never seems to be a rhyme nor reason for his feet to be cold and most times he doesn't mind it. I hate having cold feet and will quickly don warm comfy socks. If I am nestling in my recliner/bed at night, I wrap my feet in a blanket.

Roger can't do that. His comfort is completely dependent on others to adjust and move and cover and uncover. Cold feet is just a piece of his comfort puzzle. When you have a chance, take a few minutes and consciously focus on all the little moves you make to get comfortable. Then take a few more minutes and stay perfectly still without making any of those moves. Roger will spell out directions as best he can using an alphabet card and blinking on the letters he wants as we point to them. Left foot. Cold. Hot. Lift leg. Stretch. Move right. Pillow under foot to hold it up. (His feet have dropped without the muscles to hold them up, and this causes a strain.) Rub heel. Lidocaine on top of foot ... From toe to head, his comfort relies on others to adjust. Head down. Sit up. Pull me left. Falling. Finger cramped. Arm hurts. Pillow out. Pad in. Fleece. Itch cheek. The late stages of ALS with paralysis are a continuous cycle to adjust and reposition for comfort and to ease pain, and warm cold feet.

Cold feet. Figuratively. ALS is the monster in the closet and under the bed that crawls out of nightmares into the light of day. The fear is palpable. Emotionally, the patient and their family are faced with the reality of death, and 'locked-in syndrome' where the monster will chip away at all those abilities to eat and swallow, to talk, to walk, to hug, to move, to smile, to breathe, until the patients are completely entrapped inside their bodies.

Families and friends face the fear of seeing their decline and sharing their suffering. Love means never wanting to see them in pain. Love means saying all too often, 'I'm sorry.'

Then there are fears - financially - not to be able to pay the mortgage and taxes, or to find and be able to afford to pay help, or having to choose between buying groceries or medicine, or paying the fuel bill or keeping the power on, getting new tires or ... So many caregivers are faced with the fears of losing all they have because they have to give up their jobs to provide the help needed.

There are the fears of not being capable of being a caregiver, of being able to operate the medical equipment, of using a feeding tube, of giving the medicine correctly, of ordering the supplies, of not making mistakes that will harm them. Fear that you won't have the strength to get through the days and nights due to exhaustion, or of being strong enough to lift and dress and change the bedding with them in the bed. Fear of hurting them or doing anything to make things worse.

Cold feet. Figuratively. Sometimes cold feet walk away. Sometimes the fears are just too much. The cold feet leave quickly, or maybe even after years of care. Maybe the cold feet are too old or too young to manage. Maybe the cold feet are ill themselves. Maybe the cold feet have another loved one ill and in need. Maybe they didn't have the support they needed. Maybe the cold feet have become depressed. Maybe the fears are beyond anyone's understanding.

Please pray for ALS patients and their caregivers and families to have the resources and strength to warm their feet and keep going. If you are able, perhaps you might even help them in ways that will warm their feet and warm your heart.

I would ask that you pray especially for those cold feet that walked away. My heart aches for them because they have added another layer of grief by leaving. I know that they may have very real reasons why they had to go, but those reasons won't totally erase walking away. Cold feet can lead to a chilled, sad heart.

One woman left after 9 years because she said her little girls had lost most of their childhood and had no idea of a normal life. She wanted them to have a chance. What a heartbreaking decision.

Please consider sharing this post to raise public awareness a little bit more.

May your feet always be warm.

Welcome home??

Just checking in.

We've moved in to my parent's place.  Oddly, my car keeps driving me to my townhome!

It doesn't quite feel like ours yet. Living out of boxes, going from 1500 square feet to about 700.

Downsizing.

Good stuff:  we're on one level. Luther can roll right out the back door and be outside.  Saving some money.  Parents right upstairs if we need help.

Not so good stuff:  See above, the part about going to 700 square feet.

I haven't written much because I'd say I've had no time.  Really though, I have no thoughts in my head.  I head out to therapy in a couple hours; there's always a feeling of dread because I have nothing to say.  Funny though, I always find a zillion things to say.

Just wanted to check in.  Sometimes I come to this blog page and it's easy to write.  Other times, like today, it feels like therapy:  nothing to say, brain shut down.  I looked at that picture above and it feels like my brain.  Actually, it looks like my new space!  To calm the chaos, I turn everything off. Feelings.  Heart.  Planning.  I know this isn't good.  It isn't dealing with the issues that shut me down. That's what therapy is for - to help figure out chaos aversion.  Turning in to a robot isn't helpful.

This is really a random post and doesn't feel very illuminating.  Must everything be insightful? Thoughtful?  Therapeutic?   Geez, that feels so tiring.  Sometime a nap is more helpful.  Or is that robot behavior?