Suddenly, we had nothing to say...

Went to IHOP last night for dinner.  It's close to the house, we were running errands, breakfast sounded good!  (Side note:  IHOP pancakes are NOT Perkins pancakes!  What's in those Perkins cakes!?)

I tend to yap yap yap about nothing and everything.  Luther's quiet, he listens.  Lately, he's been even more quiet.  I started talking to him about the disease, his feelings about it, I wondered if he thought about what was next.  He said he didn't know.  That was about all he said.  I made a conscious effort to stop yapping. Usually Luther gets in a yap or two but this time, all he said was he didn't know.  There was this uncomfortable moment of silence.

A few minutes went by.  I asked him if he was ok.  He said he just didn't have anything to say.

I'm not sure what to think about that.  At dinner, I asked him a few questions about it but realized he didn't appreciate the badgering.  (Yapping and badgering.  Fine qualities in a partner...)  So I stopped, just let it be.

But I'm just not sure what to think.

--------------------------------------

I have this Caregiver's Guide from the Muscular Dystrophy Association.  223 pages long.  I couldn't get past page 21 without crying.

I flipped through the pages.  There are lots of pictures of people in wheelchairs, people with vents (the equipment needed to help breathe), pictures of people being cared for.  That got me to thinking:  I haven't really seen, up close, what ALS looks like.

I see it in Luther every day, to some extent.  According to the Guide, he's in the early stages of ALS:

- Muscles are weak, soft, twitchy
- Significant muscle loss located in one region
- Milder symptoms spreading to other regions
- Experiencing fatigue, poor balance, slurred words, weak grip
- Needs assistance with physical tasks

I stopped reading after the late stage section:

- Most voluntary muscles are paralyzed
- Ability to move air in and out of lungs is severely compromised
- Severely limited mobility.  Unable to care for own needs
- Speech no longer possible
- Eating / drinking by mouth not possible
- Assisted ventilation - either non-invasive or a tracheostomy
- Feeding tube
- Possible catheter

I understand this is a process.  A 'journey' the Guide calls it.  They even included a poem about it, which, frankly, right now, I could've done without.  A coupon for a free drink would've been better.

As Luther goes through the stages, I understand - as I sit here right now thinking in a Spock-like, logical way - that we become more accepting of the progression.  He doesn't go from weak muscles to being paralyzed in a day; over time, we'll be more "used" to what's occurring.

I understand that with each loss of function, there comes non Spock-like emotions.  Sadness, anger, depression.  Almost like the five stages of grief.  Grieving the loss of mobility, of eating, of sleeping comfortably, of intimacy.  The thing is, each loss doesn't come at the same time and it's re-grieving each time. And --- we're still in the early stages of the illness.  Luther still has lots to lose.

The challenge will be to see what we gain amidst all this loss.  (Insert poem here...)  All the things we take for granted, even now -- he still walks, drives, works.  What can I give to Luther to mimize the loss?  More love?  More intimacy?  Less yapping?  More understanding?  I don't know.  All of the above, I suppose. And more.

Last night, I know he wanted nothing more than for me to be with him.  Cuddle up in bed and fall asleep next to him.  I couldn't do it.  As I type this, I think geez Lynn - what a complete bitch.  But last night, I felt that wall of Spock-ness coming up.  I didn't want to be close to him.  I couldn't (or wouldn't) - at that moment - see past my sense of loss.  I fell asleep on the couch.

This morning, as I helped him get ready for work, I took extra time to rub his back, to hug him and tell him I love him.  I wanted nothing more than for him to stay home an extra hour so I could give him back what I couldn't give him last night.

Maybe that's the insight I gained today??  That old cliche of not taking any time for granted.  I can't take back last night.  I need to find a way to take a few bricks out of the wall when I'm feeling distant..

We're going to our first support group meeting in a couple weeks.  I think that first time will be hard.  It's the visual that will be shocking:  the pictures affected me.  How will it feel to see people in various stages of ALS?  It will be difficult to see where Luther's headed and yet, it's good to see it now and be prepared.

Time to go read past page 21.

All is quiet on the Fridley front...

Tonight, not so scared.  Just one of those days you get up, go to work, do stuff because you have to do stuff whether or not someone's sick.  I think that's most days - you just go.  Do.  Figure it out.

I was breathing easier for a couple weeks because the disease - which had taken hold of him so quickly - seemed to slow down.  We were settling in to a routine.

Some of this is because Luther doesn't tell me stuff.  He is generally eternally optimistic and I think he thinks he doesn't want to worry me.  We've had the conversation that this isn't really the time to not worry me... I need to know what's going on.  So some of this "settling in" was because I didn't know he was feeling some weirdness in his chest/lungs, his right leg was more troublesome and his right hand had become even more wasted.  I hate to say I hadn't really noticed... but I had not.

Some of this is because the degeneration wasn't happening as fast as it had.  Luther is still working, driving, he's independent when I'm not here.  So we have this routine:  I get up when he does (I work random hours and get to sleep in sometimes), I get his breakfast ready and make his lunch.  If I'm getting home later than him, I try to have dinner ready for him.  He gets himself dressed; sometimes I help if it's too challenging.  The last thing I do before he leaves is help him get on his coat.

I thought this was ok.  I could handle this life.

Until I realized it doesn't work like that.  I've heard this is how it goes:  you settle in to a momentary routine and then something happens and you readjust.  This past week was my first adjustment!  It's why I got scared -- each day brings another adjustment.  Sometimes really small:  I leave a glass of water by his bed now for when he wakes up coughing.  Sometimes it's bigger:  I helped him brush his teeth for the very first time.

Today was just another day - nothing major happened, I worked, he rested at home, we ate dinner.  A good day.

Momentary Lapse of Reason (Suddenly, I'm Afraid of Everything)

What the heck?

Can't sleep.  Can't rally.  Withdrawing.  Feeling scared.  Afraid of the future, of wheelchairs, of decisions: do I stop working?  Power of attorney.  Remembering to make a dinner that he can actually eat.  Will we have to move?  Do we get that damned Life Alert (help!  I've fallen and I can't get up!) or a baby monitor or walkie talkies so if he chokes or falls or gets hurt when I'm in another room, I will know.

I know I know I know I should focus on positive, on what we have, what I can do.  And I will.  I'm just having a moment.

One of many, I'm sure.

His side of the story

12/2/2013 12:58:00 PM: 

I like to write and find that I'm generally better with the written word than speaking. I'm dealing with a very serious illness and trying my best to cope. 

I was diagnosed with ALS (Louis Gehrig's disease) almost two weeks ago. The disease is terminal with no cure and only one FDA approved drug that might add a few months to your life. 

I'm losing the use of my hands and arms and it's starting to move into my right leg. I suspect that I only have a few more months of mobility left before I'm confined to a wheelchair. 

What is my life going to be like? Your mind usually stays sharp and all of your desires and urges are still active you just can't move to act on them. 

I get depressed and frustrated and have some emotional lability. I'm lucky that I'm with an amazing woman and we are working through these issues.

11/4/2013 1:09:02 PM: 

I don't know how to express how I feel. 

I'm not in physical pain but I hurt. My body doesn't feel like my body anymore. I sleep yet I don't feel rested. 

I go about my daily routines without the zest I used to feel. I feel distant from everything and everyone. 

We had a nice weekend planned but only parts of it actually happened. We missed out on our relaxing part of Saturday. 

I feel somewhat alone as I begin my journey with this newly diagnosed disease. 

I know that I'm not the only one affected and my deterioration impacts us both. 

I know that the load you are carrying is burdensome. 

I can't do the things I want to do and that is truly frustrating. I'm fighting with a monster and right now the monster has the upper hand. 

I'm afraid this is a fight that I can't win but I hope that once in a while I can get the upper hand. 

I suspect that I'll never be the man I was but hope the man I am will be enough. 

Oven mitts, coughing and the art of knowing when to shut up

Oven mitts

oops - coughing.  Gotta go - see what's up...

Back.

We can't find gloves/mittens to fit.  More precisely, we can't find something to cover his hands that he can get his hands in to.  Fingered gloves are just no good - his hands are kind of claw-like so putting individual fingers is too tough.

Mittens seemed like the next solution - no fingers!  Of all the mittens we looked at, the wrist part is tight and he can't get his hands in them.

It's like fourteen below zero right now and he needs something.  Oven mitts seemed like the next best solution!  Roomy, thick - just slide your hands in and you're set.

Unfortunately, the lobster claw oven mitt - the only oven mitt I own - was not appealing.  Come on!! Hipster ALS guy wearing lobster claw oven mitts as mittens!!  He was not amused.

I gave him a towel to put around the steering wheel as Plan B.

Plan C was the kind of booties dogs wear on their feet.  A girlfriend's mom made her dog these fleecey boots you just slide on each paw and wrap the velcro around the ankle.  Modifying that to my human guy's hands, I thought no fingers, no tight wrist part, I'll just wrap the velcro around his wrist and instant warm!

I'm not quite the crafty girl so I put my mom on the job.  She's super awesome at sewing and creating stuff out of practically nothing.  MacGyver with a needle and thread.  We'll see what happens but in the meantime:

Plan D = these wool slippers my mom knits.  From oven mitts to dog booties to slippers as mittens.  She brought them over and I know the guy was reluctant to wear them.  It pisses me off to some extent because you have to do what you have to do, right?  Here are your choices:  frostbite at 14 below or wear the damn slippers on your hands.  Plus,. really, who's going to see you?  No one.  We just got the slippers tonight, so we'll see if he has a moment to think it over...

Coughing

Luther has this ungodly cough.   It has annoyed me to no end, especially prior to the ALS diagnoses because it's caused by smoking.  I figured that it's worse now because of winter:  walking out in the cold seems to aggravate it.  Plus the dryness inside - it's miserable.

The last several nights, he starts coughing around midnight and it doesn't end for an hour or so. It's not consistent - it's random but it keeps him awake.

So tonight I googled "ALS and coughing."   Man.  Here's what I learned :

Especially after eating, persons with ALS may cough for a long time, due to food particles or saliva that is stuck in the throat. This is uncomfortable for persons with ALS and for those around them but the far greater and more serious problem is the depletion of available energy and strength that leaves the person fatigued and vulnerable.

As I was reading this info, he was coughing.  Usually, I let him keep coughing, figure it out, eventually fall asleep.  After I read this, I realized I need to step up my caretaker role.  It didn't occur to me that coughing was part of the energy management stuff.  That this would leave him tired and worn out.  I went upstairs to see what he needed.  Of course, he says, "nothing."  Got him water, got him some congestion medication, hugged him for a few minutes and put him back to bed.  No coughing in the last 1/2 hour.

The Art of Knowing When to Shut Up

All of the above ties in to what happened tonight.  Oven mitts, slippers as mittens, when a cough is more than a cough... I get annoyed, I get pissed...it all gets wrapped up together in to this 'what I learned' moment...

It's Christmas Eve and we spent time with about 25 family members.  As soon as we got there, he was eating.  My mom was trying to chat with him and he was ignoring her.  I did the old eye roll and asked, "are you listening?"  His reply:  I'm eating and I can't do any more than that right now.  My eyes quickly unrolled...

After being there about an hour or so, my nephew - 13 - walked up to Luther and said, is anything wrong with you?  You look really sick.  Luther said he was tired and then my nephew quickly said, I'm sorry if I made you feel bad.  Talk about a moment!  My heart tugged in 100 different ways.

I put my caregiver hat back on and decided we needed to leave.  My brother-in-law asked if he could start the car for us and Luther said no.  My sister jumped up and got my coat and then Luther's and I could tell Luther was a little irritated.

On the drive home, I was giving Luther a hard time for not accepting help.  Hey!  If brother-in-law wants to start the car - yay!  Let's let him!  If my mom wants to give you slippers to put on your hands as gloves, right on!  Warm hands!   If my sister wants to help put on your jacket - what's the big deal?  I asked him why he wasn't talking and seemed to be ignoring people who wanted to talk to him.

I type this with tears in my eyes because it's so hard for me to put myself in his orthopedic shoes.  Eating takes all his energy.  All of it.  He can't have a conversation while he eats because he can't do both.  I learned tonight that noise level zaps his energy.  25 people in a room is a big 'ole zapfest.

I also realized that what I take for granted as help from friends/family is hard for him to accept  because it means accepting he can't do it anymore.  What I see as one less thing I have to worry about, he sees as acknowledgement that the disease has taken one more thing away from him.  Can't eat.  Can't zip up his jeans.  Can't lift a bowl.  He wants to hang on to everything he CAN do because he can.

I'm his energy manager.  His caretaker.  I need to keep my mouth shut, sit back and listen to him.  How do I walk that tightrope between making him feel "normal" - allowing him to do what he can, even if it is a struggle?  How do I take it out of his claw hands and say it's now in my hands without taking away his manly stuff?  He's wired to take care of me.

It's hard for him to ask me to unscrew the top off the milk.  W'eve now settled in to this routine where I just take it off in the morning before he gets up.  f I give him a granola bar in his lunch, I make sure I just cut off one end so he doesn't have to monkey around with peeling it open.  Little stuff you don't think of until he realizes he can't do it anymore.

Each day makes me more aware how important it is to take a step back and really listen to what he's telling me, really watch how he's doing and figure out a way to help him without making him feel less than.  The disease is doing a good enough job of that without me taking away even more.

Energy Management

This disease - ALS - is all about managing your energy.  Think of it like this:  if you, as an able bodied person, went to the gym at 5 this morning and worked our hard for 3 hours and then went to work and stood the whole time you worked, then rode your bike home, cleaned the house, cooked dinner, did laundry and finally at 10 pm, sat down to watch the news before bed... if you did this, your muscles, your brain would be pretty darn tired.

We met with consultants, doctors, therapists at the U of M two weeks ago and everyone talked about conserving and managing the guy's energy output.  Make decisions on what is valuable to you:  is it more important to get your own self dressed this morning or be up for taking your girlfriend out later that night :)

Yesterday, we spent the whole day together, which is pretty unusual for us.  I work retail and have random, crazy hours.  He has the traditional Mon - Fri job 8 - 4.  Synching up our schedules is tough, especially on the weekends.

The muscle degeneration seems to have slowed - at least outwardly, to me.  Life has stabilized somewhat and feels 'normal'.  We chose to have a normal day yesterday.  The kind of days we used to take for granted.  Monkey around at home, leave for a late brunch around 1.  Walk down Grand Ave, hold hands, people watch, shop.  We ran a few more errands, went to 'our' nail place and got mani's and pedi's.  Ran a few more errands and got home around 7.  6 hours of out and about.

We had plans for today - just more stuff around the house.  My dad called to do something.  The guy is downstairs, in his man cave and I think he's sleeping.  Earlier, we were sitting together here in the living room and he'd close his eyes but say he wasn't sleeping.   I told him to go downstairs, hang out and we'd figure something out for later.

I figure, let him rest.  Conserve his energy for the upcoming week, the holidays.  We're still hanging out together.  I'll do the stuff around the house while he sleeps and we'll spend time together later.

The new normal.

Sex

It's a delicate issue, right?  I don't want to spill the details and I'm sure no one wants to hear 'em.  And yet, sex is important.  Not only from a purely logistical point of view - I mean, if you lose your muscles, how do you HAVE sex?  Always on the bottom?? Geez.  I call unfair!!  (I kid, a little...)  But also from the point of view as a care taker.  I just wrote how much I love Luther but when I put on my caretaker hat, sometimes it's hard to jump in to romance girlfriend mode.

We were at Snuffy's Malt Shop last night, having this sex discussion over burgers and, of course, malts.  Last week, Luther lost three pounds without changing anything about the way he eats.  So the dietitian said EAT.  Eat a lot.  Keep up your weight.  (For my part, this is probably a whole 'nother blog post at another time....)  So Snuffy's seemed appropriate.

The table behind us was having a discussion about math!  The table next to us was on a date.  We were talking about having sex with a disability.  Those are the surreal times where you realize life just moves along no matter what your situation is.

The thing about ALS is that you do become paralyzed.  However, many times being paralyzed also means a loss of your senses, too and you don't feel anything.  In the case of ALS, you still feel stuff.  If a mosquito lands on your arm, you'll feel the itch but you can't itch it.

http://twohlson.com/2010/11/01/my-life-with-als-a-work-in-progress-2/ 

This is a great description from the blog linked above by Tom Ohlson who has ALS:

In ALS, the motor neurons die, which in turn causes the muscles to waste away. For the most part, your senses, cognitive abilities, bowel, bladder, and sexual functions all remain intact, but the rest of your body wastes away until you are pretty much a complete vegetable. 

As an example, you can smell the food near you, see and hear the fly buzzing around the food, feel the fly when he lands on you, and even taste the little bastard when he flies into your gaping, drooling mouth. Because you still have all of your mental faculties, you are really pissed that you can’t do anything about that damned fly. 

To add to your frustration, you’re also very horny. The disease hasn’t affected your sexual desire or function, but because you now have the mobility of a potted plant, you can’t do anything about it. Even if someone took mercy on your condition, you are probably no longer in the mood because you can’t get the taste of that cursed fly out of your mouth!

So last night at Snuffy's, disabled sex talk.  It felt weird and good and awkward but necessary.