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.

I love Luther

I love my boyfriend a ton.  When we first got together, I had doubts.  Then again, I have doubts about everything.  My spirit animal is chicken little.  The sky is always about to fall even on a sunny day.

Which is why I love Luther.  He is calm.  Zen.  Unshakeable.  Even now, in the face of this ugly terminal illness, he's funny, loving, horny and still calm.  I have fits of rage and sadness and complete fright and I wonder how we'll ever make out again with this thing taking him away from me and he puts the weight of all that on his ever-degenerating shoulders, allowing me to vomit out the negativity.

He's like my superman.  That's not really right.  He never changes from mild-mannered computer geek to a superhero.  He's consistent.  He's mild-mannered in the most excellent superhero way.

When I met him, I was hoping for a cave-man, drag me by the hair, boss me around kind of a guy.  I thought I needed someone who'd make me do stuff because I wasn't getting stuff done.  I realized, while this is a hot image, his mellow attitude centers me.

At times, I rail against the zen.  I try to create a little drama.  I think my past relationships have been filled with drama and uncertainty.  Now, with Luther, things are for sure.  He's here.  When I call from work to tell him I'm on my way home, his reply is always "I'll be here!"

He has his moments, sure.  Like when I decide at 10 on a Sunday night to rearrange the living room furniture. He lets me do my thing and then flees to the basement man cave where I'm sure he's wondering what the fuck?  But he took that in stride.  I couldn't finish the chaotic rearranging.  He let it go on another day and then asked if I needed help.  He didn't yell at me for the mess or give me the disapproving dad eyes or actually say what the fuck?  Instead, he helped me move a chair in to the exact right spot, sat down in it and said he liked the new look.

In the face of knowing I'll be a caretaker for someone I've known less than two years, I get pissed off.  I think, why me?  I've waited a million years to find someone to spend my twilight years and now he's going to die.  My turn to say what the fuck?

But I look at Luther and he has the best sparkly blue eyes and for god's sake, they're still all twinkly and happy and he's always smiling, especially when I'm having a fit over the fact I tried to rearrange furniture as a way to avoid cleaning the house or thinking about his terminal illness -- he's putting his arms around me, letting me rest my head on his chest when he's the one with this illness.

Luther is a really, really good man and I am a lucky, lucky girl.

Vacation

Home for the week, burning off vacation before the year end.  Nothing great planned like a trip to Vegas or Mexico.  Well, wait.  Great things planned like cleaning the  house!  Not the regular cleaning but doing the stuff I've been putting off forever.  And now, with the guy's ALS stuff going on, there's a sense of urgency to getting these things checked off the list.

He can't lift his arms beyond waist high.  3 months ago, he could lift chest high.  Now it's waist high.  Try it. Keep your elbows at your hips and try to lift your hands no higher than your waist.  Imagine getting dressed. Eating.  Reaching for jelly at the grocery store on the high shelf.  Brushing teeth.  It doesn't work out too well.

My vacation plan = rearranging to make his life easier.  I have tupperware and big bowls on a low shelf. Plates, bowls, glasses on high shelves.  Isn't that sort of the way we do it?   Those will be switched so he can reach the stuff we use most often.   Rearrange the closet and make his clothes lower.  I have to go to the hardware store and get key rings - those metal circles - and put them on his zippers.  Gripping zippers is tough and I think if he hooks his finger in one of the rings and pulls, life could be a little easier.

It's these little things we take for granted that make things so difficult.  Trying to think of new ways to make life less frustrating.