Wednesday, September 24, 2014

Don't be a burden...

Luther and I were downstairs tonight, planning out our day tomorrow.  I have a dentist appointment at 10:40 then off to work at 2.

It will be good to get up early, have breakfast together.  I said we'd wash his face, brush teeth, change shirt. Yes, he agreed.  Armpits, too, I said.  We have to wash your pits.

Luther just gave me a mournful look and said, no.  No armpits.  That's just too much.

I started laughing.  The pits will send you over the edge?  Yes, he said.  I just don't want to be a burden.

Yep,  That's right.  It's the pits that burden me.  Not the zillion other things - talking about his end of life care, seeing him in pain all the time, the constant coughing/choking, the fact he's unable to reach out and hold my hand.   It's your dang armpits that weigh me down.

Note to Luther:

I love you!  Sometimes I'm running late or running around like a crazy chicken and I put your brushing hair or your teeth last.  I'm sorry for that.

Every day I want you to feel good! Washed up, squeaky clean, ready to rock!  I know there are some days you aren't rockin' out much and you don't feel like making the effort.

But I want to make the effort for you because I love you and you deserve to feel great.

Plus, you know.  Snuggling.  I want you to smell good for that.

Monday, September 22, 2014

How to not be annoying

Well, it's been two and a half days of togetherness.  I've started working part time this week, I'm going from 32 hours a week to 20 - 24.   I'm excited to be home with Luther, happy to simply spend down-time with him and not be rushing home from work, slapping a quick dinner in front of him, giving him meds, doing a load of laundry and then going to bed.

When I left work on Friday, it occurred to me I wouldn't be back until Tuesday afternoon and it was a mixed bag of feelings:  excited and happy to have this time, feeling fortunate that I am able to and a just a little melancholy (I know!  weird!!) that I wasn't going to be working.

I will say I'm not quite sure what to do with myself.  I'm bugging Luther every fifteen minutes:  are you ok?  What do you need?  Did you call for me?  Are you thirsty?  Let me put lotion on your scaly dry arms.  I think I need to trim your beard.  OMG!  Look at this hilarious kitty video I found online...

Mostly, it's awesome I can actually fix a meal, sit with him and have a conversation.  I cleaned out some of the laundry room and we could spend time together as I cleaned.  He helped make decisions so it was still a team effort!  It feels really good to be with him, to be relaxed with him and to enjoy his company without being so tired from work.

I realize I have to stop being a momma bear and find that line between thinking every cough is a cry that he's choking and just letting him be.

I do give my friends and family permission to let us know if we do get a little too crazy...

Thursday, September 18, 2014

At the hospital (false alarm)

Sitting in the emergency room at the VA.  

We hope nothing related to the ALS, just regular person sick stuff.  Either really bad indigestion or gall bladder??  He's in xray now.

The nurse put a blood pressure cuff on his arm and had to find a smaller one.  :(  My bony guy.

The doctor asked him to point to his pain but couldn't so I got to be the pointer.  Up, not there, higher..

We will see.  Just hoping a big `ole Tums will do the trick.

Yup, just gas!!  Yay!! 

UPDATE:  The next morning.  Reflecting on the fact I'm happy this is just a regular thing and not an ALS thing, I realized it didn't occur to me Luther might get a cold or gas or the flu.  Suddenly I want to keep him tucked away inside and not let any germs get to him.  

On my end, yesterday was over a 12 hour day.  I worked at 9, got home at 6 and we went to the emergency room right away.  Got out around 11 and couldn't fall asleep right away - had to get him situated, cleaned the kitchen a little, ate a bagel at one in the morning.  

This week is my last week of full time work.  I called in this morning and said I'd be late.  I'd like to stay home, make sure he's ok. just keep him comfortable, and frankly, take a nap.  

I keep thinking of my sister at these times - or any mom.  I've never had kids and my sense is this is a lot like having a kid.  I don't know how you guys do it - managing sick kids then going to work, going on an outing and making sure you have an extra jacket, a juice box, hand wipes... Many times, I forget his reading glasses.  I suppose I have to make a "kit" so I'm prepared for whatever comes up.

It's these times I realize I'm less wife and more caregiver.  We fired our third home health care worker and finally "fired" the agency.  A couple never showed up and one just sat there for 3 hours.  

I think I'm tired - I'm rambling and way too many random thoughts.  Oatmeal's on the menu this morning instead of the usual pop tart.  I think I've been slacking on the menu planning -- hence, the indigestion.  I'm not a cook at all.  Plus he can't really use his arms much anymore so he can't use a fork.  He gets lots of finger foods he can pop in a micro wave while I'm at work.  Clearly, this has caught up with his tummy.  

With going to part time next week, I can feed him more often and feed him healthier foods.  Bonus:  I get to eat healthier too!

Off to start the day!  (Update:  I just went to pour the oatmeal in to the boiling water and the water was all evaporated.  I realized I used the oatmeal quantity for the water.  OK - I'm taking a mulligan on starting the day.  Here we gooooooooooooooo!)

Update #3 - trying round 2 on oatmeal:  it cooked too fast so it didn't cook at all - must've had heat too high.  I can't cook oatmeal!????  I'll blame it on my old stove.  Awesome part of the update:  I had called in to work to see if I could come in an hour later.  My boss called back and said  they could cover my shift until 2.  Isn't that great?  Makes me feel better about staying with Luther.

Ok,  Now let's go check the oatmeal.  

Attention Deficit Dis - oh wait! Look at my cat - isn't she cute?

I'm in therapy.  Have been since Luther was diagnosed.

Apparently, I have ADD.  Which is Attention Deficit Disorder.  There is also ADHD.  The H standing for Hyperactivity but I do NOT have that.  I might have ADSD - S = Sedentary....

What I've learned is I've probably had this for a while.  Most of my adult life.  I don't recall having it as a kid.

A lot of us probably have some form of it.  I mean, who wouldn't in this day and age of so much input?  We multi-task, strive for more, do it all, set goals, lose 10 lbs in a week, read emails, texts, facebook, twitter, instagram, we watch tv on our phones, we get there faster, do it better, create more.  Who sits still to read a book anymore?  Calls a friend?  Sits on the deck on a sunny day and just hang out?  You get my drift.

ADD has served me well at work.  I can do 100 things at once without breaking a sweat.  I work in retail and between phone calls and customers and a pipe falling on the phone guy's head and hiring new people and watching a kid we think is stealing and the toilet overflowing and there aren't any quarters left and... I've learned how to manage this.

Sometimes, many times, I get really really distracted and it's tough to go back to #32 on that list of 100.  I've never kept lists - I usually laugh and point to my forehead and say, yup, it's all right up here.  It's the list in my head.  Which tends to make things even more chaotic.

People with ADD need lots of structure.  Self imposed structure.  The easiest example is car keys. Unless I have a bowl right by the door where car keys are kept, I never ever know where they are. Ever.  Same with shoes, purse, glasses.  I know a lot of you are nodding your head in understanding. Some of you might be shaking your head in disbelief, thinking, how hard can it be?

It's actually really hard.  For me, organization and order isn't something innate and it's nice to know it's not a personal failing.  It's not because I'm lazy.  It's a thing that can be addressed and understood and treated which is the process I'm in now.

Most of us tend to just manage it.  We get overly frustrated by losing things, not remembering things, with starting too many projects and not finishing anything and feeling like we got nothing done.  But - as grown ups - we figure it out, we eventually get it done, find the keys, remember we have a dentist appointment next week.

Since Luther's diagnoses and with his decline, I've become mega, uber, insanely scattered.  I forget dates.  I forget where I'm going, I start one thing and move to another and suddenly I'm late for work. I'm overwhelmed by the smallest project.  My feet, at times, feel like they're in cement and when I try to move, my body feels heavy and slow.  I'm too tired to unload the dishwasher, especially if I've worked.

In talking with my therapist, he says some of this is depression but he's keyed in on a lot of it being ADD exploding to the surface.  What's been manageable in the past, is suddenly completely unmanageable.

Accepting and adapting to the illness.  Trying to work, manage the house, take care of Luther - it's tough.  I beat myself up when I fail and I fail all the time.  But I've learned this is just the path I'm on. There's no roadmap.  I'll get lost, fall down, take a nap, call my mom or my sister or a friend and start again.  I don't beat myself up so much anymore.  No time for it!

But mostly I'm realizing - with such clarity - we all have only so much energy to expend in a day. My time with Luther is limited.  In the past, I was a pinball, just bouncing and reacting and careening wherever I was pushed or pulled or bumped.  Now, most every decision I make is calculated.  We're planning for so many things from small to huge:  daily schedules to bucket list items.  There are days it feels too daunting.  But it has to get done.  At times, this kind of calculated thinking drains me to the point I want to sleep for a few days.  I was, for a while.

If you've made it this far, you can probably guess my ADD medication has kicked in.

It's amazing.  It cuts through the spiderweb in my head.  It doesn't make me amped up or jittery but once I take it, things seem clear.  I don't feel heavy.  It isn't a euphoric or buzzy feeling, I don't feel altered.  Instead, I feel like a door has been opened and it's allowing feelings to surface. It's giving me a net to capture the tornado of thoughts in my brain and put them in some order.

What's unusual is the ADD med not only makes my head more clear, it also makes me more emotional.  I tend to keep the lid on that jar of emotions (whether good or bad ones) pretty tight.  Now, these little feeling of joy or warmth are sneaking out.  I've been hugging people.  I am not a hugger.

I've read the meds are addicting.  I can see why.  It's a pretty nifty feeling, this hugging and decision making and grocery shopping and happiness.

I think I can figure this out without taking drugs forever.  For now though?  I'd hug you if you were here.  I'm just happy and calm and feeling pretty rational right now.

It's a good thing.

Saturday, September 13, 2014

I had a great week. So great I have to blog about it.

It's weird to sit back and have this conscious thought: "I had a great week."    Weird because it shouldn't feel so foreign.  It should always be like this, right?  Or do the hardships, the tough times, make these moments even better?

I have to say how awesome it is, at almost one in the morning, to be able to feel that.  It's all good and gooey.  My feet don't hurt, my heart is happy, my head is clear.

We spent time with friends tonight. It was a fun night, played cards, talked a lot, laughed even more.

It's difficult at times just to get in to friend's homes.  Too many stairs, narrow hallways, awkward places to sit.   But that doesn't stop Luther.  I love that he lets people help him.

We sat outside for a while - perfect night.  When it was time to go in, the guys just jumped right in and helped Luther in to the house since the wheelchair couldn't fit.

When Luther and I got home, we felt giddy - all these emotions sort of bubbling to the surface.  I started crying - just little tears - because I want nights like this forever.  I'll even take a long time.

When we got in the house, we had this moment - a moment we haven't had in ages - I just leaned in to him and it was like our first date. We smooched for a while, it was a sweet moment.  It occurred to me he can't move his arms.  He can't wrap his arms around me and hug me. Or, you know, make a move.  I suppose I get the hint in a few other ways (!!!) but that thought intruded on our sweet moment.  His arms just stayed at his sides like a stickman.  But he's my stickman.

Fun night at trivia last night.  Here's the crazy crew.  We got first place last night!

I didn't want to go - I was all tucked in on the couch.  Luther was sleeping downstairs.  My sis, Ann, was calling and texting me to get up and come out.

I'm so glad my sister bosses me around.  We had a good time.

Fun at trivia, fun at the fundraiser.

Friends, family, love and support, making out with my guy.  It's been a great week.

Friday, September 12, 2014

Awesome night!!!

The fundraiser was a smashing success!  Isn't that how they say it??

First, let me promote the heck out of Adagio's Pizza Factory in New Brighton.

The owner, Michelle was super helpful.  The place itself has great divey bar food.

We're actually on a trivia league with some friends and family on Friday nights.  Definitely put it on your list of places to go for great pizza and a fun night.

Second, I have to thank my sister for keeping me on track. All through the planning stages, she was giving me daily lists of things to do, she was doing most of the work. Lately, I've been really forgetful, really off-kilter.  More on that in another post.  She's been my cheerleader lately and she really came through here.

<---  Ann - my sis - directing traffic at the bake sale table.

Third - we made $500 - yep - that's five hundred big ones on the darn bake sale!!  Can you imagine? On chocolate chip cookies and zucchini bread.

Actually, we had some really amazing bakers.  My brother's fiancee, Noreen, bakes like she has her on show on the Food Network.  Seriously.  We all love her a lot because she's a wonderful person but the baking skills... well... that makes us even luckier.  Another woman I work with, Debi, turned m&m's in to a work of art.  She also made these cupcakes that were adorable.

Last, I have to thank everyone who came. Seriously, as I type this at two in the morning because I can't sleep, it makes my heart all gooey and I get that cry feeling thinking about it.

We thought we had 80 folks committed so we rounded it up to 100 as the number to give Adagios, we'd rather have too much food than not enough.  We ended up selling 135 tickets. 135!!  Holy cats, I'm so grateful and humbled by everyone's generosity.

I know I am fortunate to have such a supportive group of friends, family, neighbors, co-workers.  I can be a pretty glass half empty girl at times because this whole thing feels so unfair and awful.  In those dark times, I will remember a night like last night, how much love and happiness and faith and support we felt.

It was an incredible night filled with amazing people.  Luther and I are so blessed.

Tuesday, September 9, 2014

Fundraiser dinner tomorrow night (9/10)

I've probably already hit all of you up for the ALS walk donation or invited you to this dinner.

But............ just in case I haven't -- we're having a fundraiser spaghetti dinner for Luther tomorrow night at Adagio's Pizza Factory in New Brighton   Here is the link:

It's a pretty awesome place to eat - kind of a little hole in the wall with great pizza and pasta.

$10 gets you a spaghetti dinner (you're on your own for beverages).  Adagio's keeps five, we get five.

We were going to donate all the $$ to our walk for ALS but after a lot of thought, we're going to keep some of it for us - and earmark it for his end of life care.  It was an odd discussion.  But we want to be sure when that time comes, we have some choices.

The dinner is from 5 - 8, tomorrow Sept 10.

Saturday, September 6, 2014

An ordinary day

Just a quick, quiet update.  Life is good!  Things are all right.  We did regular 'ole Saturday stuff today: cleaned, took a nap, watched college football.

I like days like this.  Normal.  No crazy angst, just a really nice day.