tired...

I'm so tired and I haven't even done anything out of the ordinary.  What's going to happen when I go in to full time caretaker mode??

I need to take better care of me so I can take better care of him.

On CBS News tonight - the Krispy Kreme caper..

Fun story on CBS News tonight - making an ALS dream come true!

http://www.dailymotion.com/video/x1973bc_the-krispy-kreme-caper_news

A 3 a.m. thank you

It's 3 a.m..  Trying to get back to sleep, thinking about a zillion things and nothing.  I started replaying yesterday in my head.

It must be said:  I have an awesome family.

My parents and my sister came over yesterday to do stuff.  I got a call from mom who said:  "we're coming over, we're going to help where we can, what time do you want us there?"

Ummm, ok.

So they cleaned, threw my stockings filled with ice on to the roof, put plastic on a window, did laundry, changed some lightbulbs.  Stuff you should do but put off.

My mom and dad - in their 70's - have been married 53 years.  What a big deal!  They seem physically smaller lately.  But they are still giants in my eyes.

My mom has a forgiving heart, that whole unconditional love thing.  A mom heart, I suppose.  She'll give you her time, a loan, advice, a kick in the ass when you need it most and want it least.  She's pretty.  She has the white-gray hair you envy.  She'll tell you she's wrinkly and wonders about a face lift.  I'll tell you she looks great.  A life, well-lived.  In my eyes, the ideal of aging gracefully.

My dad is a quiet leader.  He's honest and true, he lives by his convictions.  I'd say that I live my life in gray places, in uncertain shadows.  He lives a life in black and white.  He wants to climb Mount Everest.  At 70, he road his bike to New Orleans.  He does these big things that make you go "wow" but he does these little things - taking the grandkids skiing or iceskating, coming over to fix my door and put in smoke detectors, he shows up at every single football game of my brother's - it's these little things that make me say wow.

My sister is 7 years younger than me.  She's married with two boys.  She's the energizer bunny.  I don't know how she does it.  She works.  She's a full time mom.  She took the time to come over and clean my laundry room when I'm sure she had 1000 other things to do.  She came over with food I could put in the freezer,which is the third go-round on the food.  "No big deal," she says, "just made some extra."  It's a big deal.

I live in between my parents and my sister so we're close.  Close in proximity.  Close in heart.

My brother doesn't live as close.  We aren't as close.  But I know, I really truly know, that not if, but when I need him in the coming months, years,  he will be here.  His girlfriend (wait!  fiance!) has made us food, has offered support.  That whole family thing.  It's a blessing.

My laundry is caught up and the laundry room is cleaned out.  Bags of donations lugged up to the garage.  It feels good, light.  One or two less worries.  But what feels even better is the knowledge that when I need it, even when I don't ask, my family is there.

I'm a grateful daughter.  A fortunate sister.

Holy mackerel!!

Luther and I drove up to Walmart.

Seemingly uneventful, right?

I had to go with him to the gas station to take the gas cap off and fill up his truck.  

Ate at Culvers which was interesting - late in the day, he's tired, he couldn't pick up his fries.  Seemed worse than ever.  He's kind of spastic, he moves weird.  

Coming out of the restaurant, he couldn't drive.  His truck is a stick.  I don't drive a stick, so I couldn't drive or I would've.

I had to put his hands up on the wheel.  Help him turn the steering wheel.  It was a little weird.  Not scary at first, it was teamwork!  

After a while though it was scary sad.  How the heck does he get to work?  What happens if his hands stop working while he's driving?  He said that he almost had to call me last week to come get him because his hands didn't work.  But he warmed them up, calmed himself down and was able to drive.

He's supposed to fill out this form for Metro Mobility.  He saw his doctor today for other things but the doc needs to approve the Metro Mobility form.  We've had the form for several weeks.  I asked him why we didn't fill it out, I felt bad I forgot about it - bad caretaker :(    

He said he was putting it off.  Once he gives up something, he won't get it back.  

I understand parts of that... as much as I can.  However, in this instance, I said think of the Metro Mobility ride to work like a limo.  It's a ride to and from work - that's it.  He can still drive to Walmart.  Take me out on a date!  This Metro Mobility thing is just getting a ride to work and back.  

I'm going to find the form.  Help him fill it out tonight.   

No more crazy scary rides in the truck.

An interesting excerpt from a Fresh Air interview with Tony Jundt, who has ALS.  The actual radio interview is available in the article..  (PS, if you've never listened to Fresh Air, it's on NPR locally at 8 pm.  Worth a listen)  
click here for the article ---> http://www.npr.org/2010/03/29/125231223/a-historians-long-view-on-living-with-lou-gehrigs
a second article by Tony Jundt --->http://www.nybooks.com/articles/archives/2010/jan/14/night/?pagination=false   It's worth a read; it's rather stark and scary but illuminating.

A good problem to have...

First thing first.  It's a new year.  That John Mayer song is in my head:  Come January, we're frozen inside, making new resolutions a hundred times.   A time to look ahead with optimism. It's our yearly mulligan.  The karmic do-over.  Wipe last year's slate clean and move forward with new resolve.

Last night, new year's eve, we were at a friend's house for dinner.  It was a lovely time.  Games, dinner, friendship. We went 'round the table and proclaimed what we'd like for the new year.  Drink more water! Work less.  Read more.  Be present.  Enjoy each day.  

The thing is, the slate really doesn't get wiped clean.  The past is always with us.  It shapes us, forms our future choices.  Some of us live in the past - maybe it's because it was such a good time, maybe the present isn't such a good time.  Some of us live with regret because of the past.  We can't move past the regret and look ahead.  

And sometimes, the past gives us things we can't wipe clean.  Things we have to live with and can't change.  

Today, new year's day, was a lazy day.  My parent's invited us over.  They were getting together at their house for lunch.  

It's an odd thing. 

Last night, at dinner, all but one friend we were with didn't know about Luther's diagnoses.  At one point, the friend who did know asked if she could bring it up.  I said no.  We were having a good time, a night out without the illness sitting at the table with us.  A normal night.  She asked why I had to think that talking about his illness wasn't normal.  Maybe it should be a part of the "new normal."  

She mentioned she'd asked Luther if she could bring it up and he said fine.  That's Luther.  He's fine with everything.  Maybe I feel more protective.  Let him have these nights where he won't be the one in the wheelchair, where he won't have to be fed. 

Toward the end of the night, she did bring it up to one couple.  The information fell a little flat, a little second of awkward but it was sweet and supportive and the fact more people are praying for Luther is wonderful.

At my parent's, it was nice.  Their friends are people I've known all my life; they've had these friends since high school.  And yet, I had a moment where I felt like Luther was on display.  It was only a moment.  I know the invitation to their house was only done out of love and kindness and because we live three miles away.  

I guess the point is how do we (maybe, really, just me?) deal with this love, this caring?  Sure, I know that sounds silly.   Accept it.  Welcome it.  Stop writing about it.  It's a wonderful "problem" to have.  It IS a good thing and I love my family and friends for wanting to step up and give us their time, their support, their love.

Maybe it's figuring out how to open up my arms and just accept.  On the flips side, figuring out when to say no because I'm not prepared to be in protective mode, not willing to talk about his illness or how I feel.   

New year.  New changes.  New ways to look at life.  Finding balance in our new normal.

To hear the John Mayer song stuck in my head,
click this link --->  https://www.youtube.com/watch?v=UTHCT5jOoZ8 )  It's a sweet song.

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.