Monday, March 31, 2014

Back to real life

Well, we're back.  Almost a week in Florida with my mom and dad.

My brother bought a retirement home in Florida with his awesomely nice girlfriend, Noreen.  It amazes me my brother bought a retirement home in Florida and he's not retired.  We tease him about not mailing Christmas cards in order to save the postage (he gives them to us on Christmas)... I guess the savings on all those stamps added up.

It was a wonderful week.  It was the coldest week they've had in Florida all winter but still in the high 70's. It rained a lot, too.  But we still wore flip flips all week.  No snow!  NO SNOW!

My parents are the best.  They got Luther all the invalid equipment he might need:  a wheelchair, a toilet seat riser, a shower chair.  They worried about what to feed him,  which car to pick him up in.  They gave us space, they carted us around, they fed us and put up with us.

The warmth did Luther a world of good.  It's like it warmed his bones, his muscles.  If you asked me two weeks ago how he was doing, I'd say awful.  He could barely get up.  If you asked me last week how he was doing, I'd tell you he was going to live with me forever.

I think a lot of it was the one level living, too.  We live in a 3 level townhome and it's a drag for me -- a healthy person - to lug myself up and down those stairs.  Sometimes laundry doesn't get done in a timely way... it's daunting, at times, to carry those baskets down two flights of stairs.  So I imagine for Luther it's tiring to lug himself up and down those stairs.

In Florida, we stepped outside the kitchen and there's the pool, under the screen, overlooking a canal with palm trees, big Florida looking birds, fish jumping and lizards skimming.  How can you not feel better hanging out in flip flops by the pool after being snowed under in a three level townhome?

Luther had tons of energy.  So much so that we talked of moving to someplace warm.  It was that dramatic of a switch.  I doubt we will.  Our support system of friends, family, the VA is here.  But we had these moments of thinking we'd fling our winter boots away along with our fear and anxiety and head someplace warm where the warmth itself seemed like a cure.

We're back, it's chilly, rainy.  I worked today.  We're back.  The chill is back in his bones, his muscles.  It was a joy to have this illness put on hold for almost a week.

Thursday, March 27, 2014

On vacation!

We are in Florida with my mom and dad.  Luther has had lots of energy which is great to see!  More later...

Monday, March 24, 2014

Diabetes, too...

Often times, we don't sleep together.  Like Lucy and Ricky but in a different room, even.

This morning I woke up to a noise, not words, just a groan.  It took me a minute to figure out it was my bat signal to get up and help.

Luther has Type II diabetes.  He had a heart attack in April 2013.  In terms of attacks, it was minor.  No heart surgery and a stint was put in to his leg, nothing in his heart.  Other than eating better, there was no real rehab stuff.

We did eat better.  Mostly low sodium, lots of fruit and veggies.  I was cooking more, less going out to eat.

Now, with the ALS, the doctors said don't even think about your diabetes.  Eat what you want.  Eat 3000 calories a day, if you can.  

This morning, he couldn't move because he was so weak.  The sheets were drenched.  His body felt clammy and cold.  We got him ice cream, orange juice, an english muffin with peanut butter.  More oj.   He did perk up a bit, he could open his eyes, he could move again.

I got him up to go to the bathroom and it was hard.  He couldn't lift his arms to put them on my shoulders, for support.  I put my arms around his waist but it was awkward.  He walked like a drunk Frankenstein. Lurching.  His right side seemed worse off than ever.

I could see the goose bumps on his arms and back.  He's so cold.

We got him back to bed.  Covered him up.  I'll check on him in about 1/2 hour and see what's up.

Wednesday, March 19, 2014

Three more pounds

Luther's down to 187.  The nutritionist told him if he loses weight, he'll die faster.  He's supposed to be eating 3,000 calories a day.  Can you imagine?

My skinny guy gets skinnier.

I don't want him to die faster.  I need to figure out a way to feed him better calories.

It's a little difficult at times.  He's like a five year old:  he doesn't like peanut butter.  He goes on these jags where he'll only eat a bagel for breakfast and then suddenly, hates bagels.

Most smoothies - which are an easy way to pack in fat, protein - sound gross to him unless maybe I could figure out how to make an orange whip one.  Orange whip?  I have a million recipes for high fat, high protein smoothies but no orange whip.  Add that to the list.  I'm on it!!  

Plus, you know, the hand thing.  He has a hard time using a spoon so lots of this stuff has to be finger food. He's on a pronto pup kick now.  I will admit, it's easy.

I'm off to make a slow cooker roast but I worry about his access to it.  He pantomimed the action of getting to it last night, in theory it seemed to work so we seemed to be covered.

There's always a Plan B, though.  If he can't eat that, what can he eat?  There's a couple of pronto pups left...

Tuesday, March 18, 2014


I'm meeting with Barb Brandt this Friday:

Her husband died from ALS in January.  He had it for two years.

I mentioned our situation to a customer at work and she knows Barb.  This customer thought it would be good for us to meet and connect.

It feels odd, this random connection.  I feel unsettled about the conversation.  Prying in to her life, opening up my own.

My chicken little worry hat is on too tight.

I sense it will do us both good to share our stories and I imagine her resources, her first-hand knowledge of caretaking will be invaluable.

I love this picture of Michael Brandt and his kids at a bike-riding fundraiser:

Luther and I were talking about his future.  How tough it is to think of things to do when your body won't let you do anything.  The reliance on others to not only get you places but to do things like wrap your hand around a glass.

I'm not going to be with him all the time.  Sure, it's going to be great to have a home health care worker here. But I want his time to be spent with people who love him, you know?  Sit with him, watch a movie with him... can he play cards?  scrabble?  He can't use his arms.  What's he going to do all day??

Looking at the picture in the link above gives me hope we can be outdoors, we can enjoy some ordinary every day things, we can find ways to adapt his immobility and make him feel like he's part of the world and not just a bystander.

Thursday, March 13, 2014

Hit in the head with a ton of bricks

Every so often, the fact my boyfriend is dying flies out of nowhere and hits me hard.

Most days, you just go about your business.  You don't think about it.

Even when he looks so small or can't scratch an itch because his arms don't reach a place anymore or now I have to give him his insulin shot (because his arms don't reach that place anymore) - I don't really consciously think about it.

But every so often, like this morning, it squeezes my heart and stops my world for just a second.

It's a bright, sunny day.  It's time to get up.  The world just keeps moving and so do I.

Wednesday, March 12, 2014

A link worth reading

I've linked this before, it's an excerpt from a book called "Until I Say Goodbye" - a book by Susan Spencer-Wendel.  She's a journalist who has ALS.  She's funny, insightful and moving.  It's a short read, worth a minute or two.

Things I never knew...

My life has been pretty insular.  I can be a glass half empty girl but generally, I view my world through rose colored glasses (albeit a few smudges here and there).  I have good things in my life:  my family, friends, a good job, my home, Luther.

We took a trip to the social security administration office yesterday.  What a kick in the head.  It was like being in an alternate universe but I realized this IS real.

I didn't know that drug-users or alcoholics can get social security disability.  Sure, I get that it's a serious addiction.  I don't imagine there are many addicts hanging out on a beach drinking a cocktail living off social security.

I bring this up because I could overhear virtually everything around us.

Let me back up a little.  The office opens at 9.  At 8:55, a line of 10 -15 people huddled outside.  The door opens, everyone moves in.  There was a security guard / host sitting behind a desk.  Part comedian, part greeter, he directed the line and told jokes about the weather.  You take a number, sit with the masses and wait.  I remember thinking they needed some music.  There's a poster with George Takei (Sulu from Star Trek) and Patty Duke telling you to boldly go to the SSA website.

There was a blind man waiting.  A woman in full snowmobile gear doing stretches.  A young, well dressed woman with an older scruffy vet; they made an odd couple.   A dad with his disabled son.  An asian english speaking daughter with her non-english speaking parents.

You wait until they call your number and you go in to another room with a row of... booths?  You sit at this window like booth.  The person helping you sits on the other side.  There are five of these booths on each side of the room.  So you're sitting right next to someone else who's pleading their case for why they should get social security.

Back to the drug-addict receiving benefits observation... A mom, in her mid-sixties, using a walker, was at the booth behind me.  She was trying to get her 42 year old daughter's benefits turned over to her.  Her daughter had been in and out of rehab for years but every time she got her SS check, she'd "run" (mom's words).  The daughter would take the money and relapse.  It broke my heart for this mom.

Another group of people sat next to us.  An older widowed mom, her adult disabled son and another woman who seemed to be their advocate.  Apparently, social security had been overpaying them for years and was now asking for repayment.  The mom was taking care of the son, living on a fixed income.  Her husband, I think, had recently died.  Living on a fixed income, dealing with the death of her husband and the fact she was her son's caretaker and now being asked to repay what was an administrative mistake.  All I could think about was the government waste we hear about and who was standing up for this woman??

I thought about our situation.  That Luther is dying.  His social security application will be fast tracked because of his illness.  It won't take the usual six months to be approved.  I thought about the people around us, who weren't terminally ill.  I don't know... you can't compare, I guess.  But Luther and I lead a good life. I'm not a parent chasing down an addict daughter I can't find.  I'm not a mom taking care of a disabled child. I can't even imagine.

It's so interesting that each time I feel despair or sadness there's something around the corner to kick me in the ass and keep me moving forward.  

Monday, March 10, 2014

Reality check...

At the Vets Hospital today.  Range of motion exercise test to see if Luther's eligible for a motorized wheelchair. He is.  Things are happening faster than we want to see, than we want to accept.

We thought for a time, he could use a cane.  In your head, you have this cool image:  a wandering nomad with his big stick.  Big Daddy with his cool cane.  But he can't grip so he can't hold the cane.

They're providing him with this techno-walker.  No tennis balls on his walker!  It's got four wheels, turns on a dime, has elbow rests (which he really needs - his arms are like heavy weights hanging from his shoulders), a basket!! and a seat.

He went from one brace on his leg to two.  They're actually kind of cool.  They strap around his leg and brace the front of his leg.  Knee high.  Super lightweight metal that curves under his foot and slide in to his shoe.

It's humbling to be at the VA.  My moments of "geez, I have to get up early" sort of pale.  I know I have to recognize my issues  - I think it's legitimate to say I'm tired and figure out how to find more time - and yet, when I put it in perspective, the scale of my issues are small.

It's a bright, sunny warm day today.  Feels good.  Feels hopeful.   <---- Power of  Two, Indigo Girls
"Baby I'm here to stop your crying
Chase all the ghosts from your head
I'm stronger than the monster beneath your bed
Smarter than the tricks played on your heart
We'll look at them together then we'll take them apart

Adding up the total of a love that's true
Multiply life by the Power Of Two"

Selfish thoughts on a Monday morning

6 am

My time is no longer my own.

Rearranging my work schedule on a weekly basis because of Luther.

Changing jobs, stepping down as a manager so I can be closer to home.  I'm no longer in charge; I've acquiesced a 16 year career.

This morning, getting up early, fighting traffic to get him to an appointment because he's given up driving long distances.

My days off will no longer be my sanctuary in my quiet little home.  Since Luther's no longer working, he'll always be under foot.

Little things:  last night... exhausted, falling asleep, realizing I couldn't because I needed to pull the covers up over Luther - tuck him in bed, so to speak - because he doesn't have the arm strength to do it.  It was just a moment of my time, really no big deal.  But I add up these moments and it becomes something larger than me.

This isn't a rant or a complaint.  An observation, perhaps?  I don't feel guilty for thinking these things.  Guilt creeps in occasionally because, you know, death trumps all, and I think quit, ummmmm - observing!  (I was going to say bitching but that felt too harsh).  I realize, though, I "get" to have these feelings. I'm allowed to wonder where I fit in.  I don't want to be defined as the girl with the dying boyfriend and yet, this is who I am now.

Luther is usually aware of this and works hard to give me space.  I appreciate this.

Just a Monday morning, too early!   Anxious about driving to the VA in traffic, big changes at work, unsettled about where I'm going next.

Ok.  Time to tuck those thoughts away and get moving.

Thursday, March 6, 2014

Retirement. Giving up? Letting go? The prospect of doing nothing.

Today is Luther's last day of work.  Last night, he was amped up like crazy and talked a mile a minute about everything.  Nervous energy, maybe?

I know he's jazzed about the prospect of not having to get up early, struggle to get dressed (make that me struggling to get him dressed after he's attempted to get dressed.  It's a 50/50 proposition whether he gets his socks on or not.  He tries and he gets major bonus points for still trying.), eat, get ready and yep - he's still driving.  I worry so much about the driving part.  He can't use his arms, remember?  Apparently he flings them in to the steering wheel since he can still move his arms side to side.  Just not up and down.

Giving things up is the hardest, isn't it?  Whether its letting go of a grudge, a past regret or resentment.  How many of us hold on to some old angry feeling because we want to be heard or need to be right?  Now take that THING we all have of holding on and think about giving up driving.  Work.  Putting on your socks.

The term "give up" feels negative.  Like you're a loser.  I give up.  I can't do it.  If you give up in the middle of having sex, well.  Lose.  You "give up" stuff for Lent and it's a hardship.  I'm giving up chocolate.  Suffer!  I suppose if you're giving up smoking, it's a good thing but it's still that feeling you're giving up something you enjoy.

As we age, we give up stuff.  Some things willingly.  I don't want to stay out until two in the morning like I did when I was 25.  Other things, not so willingly.  Same deal as quitting smoking.  I'm giving up mcnuggets, which I love, because I know - like the boyfriend I met when I was out until two in the morning - they're bad for me.  Youthful flings and mcnuggets.  So good and so bad.

Luther's last day of work.  He's giving up his work.  His income, part of his identity, his ability to produce, to take care of me.  It's all wrapped up.  He isn't choosing to retire.  The illness is forcing him to stop working.

My guess is he'll be relieved and excited about not working for about......... two to three months.  I imagine when you've worked for the last 45 years, you're ready to sit in the lazyboy and relax.

I'm treating this like he is retiring.  Although I'll still be working, I'm going to do my best to get him to do those things you equate with retirement.

He loves to fish.  I might have to hook the damn worm but a-fishing we will go.  Or at least we'll try.

<----My dad and Luther up at the cabin.

Tuesday, March 4, 2014

I fall in love a little more at the most random times.

I find that I fall in love with Luther a little more.  At the weirdest times.  I don't know why this is a surprise.  

He's so good.  He's so kind.  He's dying and he maintains this zen, southern cool attitude. 

I run around all morose or frustrated or insane and he let's me until I lose steam and run in to his arms that he can't hug me with and he leans in to me and says he loves me and then looks at me and says, "I wish I weren't dying" in the most matter of fact way and I start to cry... My heart just about explodes and I want to give him everything he deserves.

These grown up real things make me feel.  They send an arrow straight to my heart, piercing it deep and the tears just flow.  The love flows, too i guess.  Am I that unfamiliar with this feeling??  

I am being pretty melodramatic.  I've been crying on and off all day!  My poor customers.

My guy is six feet one, he weighed 230 when I met him.  He's sitting across from me right now talking to his sister.  It's like listening to Andy and Barney Fife have a conversation.  The word BED just became bay-ed.  He weighs 190 now.  His skinny little cricket legs crossed, all hunched over, laughing with his sister.  

I love these moments.  I love my guy.

Sunday, March 2, 2014

Disconnected connections

I spent the evening at Luther's room.  He has three roomates.  It's a weird thing.  Not many curtains.  All having different experiences, together in one room.

Luther was the only one with a visitor in the five hours I was there. I did buy the two guys I'd met yesterday little get well sock monkeys.  They seemed a little surprised...

Modesty kind of flies out the window when you're in the hospital.  They proverbial open back hospital gown.  One guy didn't have a shirt on at all.  Come to think of it, neither did Luther.  Weird body function noises.  The Oscars on one tv, Modern Family on another, some sports thing on a third.  Connected somehow but really, not at all.

Some Marines came in to visit.  It was heartwarming although as I type this, maybe a little funny.  I have a pencil and a bumper sticker from the visit. Luther said another branch of the military stopped in earlier to visit, too.  The band of brothers.  More disconnected connections.

Luther's in again tonight.  I keep thinking he's just in for a little tune up. They're pumping him full of fluids, vitamins, minerals, food, medications.  He'll come back to me a little healthier.

Another quiet night.

The house is way too quiet...

Sunday - noon.  Luther's still in the hospital.  We were hoping he'd be out today but his blood pressure is sky high so he's in another day.  

Yesterday morning was weird.  Do I take him to the hospital?  How do I get him out of the house?  Who should I call?  I was the proverbial chicken with head cut off for about 1/2 hour.  I kept asking Luther if he wanted to go to the hospital and it dawned on me he wasn't going to say "Yes!  I'd love to go!"  

I had to get it together and figure this out.  I've talked about this in the past - how we have these weeks of routine where life seems relatively normal.  And then *BAM* - something happens.  The illness lurks around, lets us fall in to some sense of false normalcy and then it pushes Luther straight to the ground, looming over us, telling us, "Nope!  You got too comfy!  Remember?  You're sick!!"

The VA (Vets Administration) is incredible.  They have an "Ask a Nurse" line so I called.  She asked for Luther's info.  I heard her type it in and she pulled up his file.  She's in Iowa but she had access to his file within seconds.

After talking about what happened, she said to get him to the hospital.  She called ahead and let them know we were coming.  How awesome is that?

I called my sister and had a moment of hysteria.  Her husband answered and I was crying pretty hard.  The thing about my family - which I've talked about before - is there are really no questions asked.  No hesitation to help.  I wasn't sure if I could get Luther up to the car.  We have a detached garage and it's a million mile walk up an icy sidewalk to the garage.  Bob - the brother-in-law - said he'd be here in five minutes.  

He and my nephew were here in about three.  In hindsight, I probably could have gotten Luther up and out on my own.  But I don't think he would have gotten up and out on my request alone.  Seeing Bob and Will here made Luther realize he didn't have a choice.  He was going.

It was a long afternoon of waiting.  Being in the ER was just like tv.  Lots of commotion, noise, different people coming in and out.  We had lots of attention in the beginning but as the day wore in, we were left alone, waiting.  We figured his situation wasn't too dire or we'd have more people hovering around us.

I think it was five or six hours of being in the ER when they finally got us up to a room.  The good news is - relatively speaking - Luther's fine.  No concussion.  No broken ribs.  His blood pressure is still too high so they're keeping him in another day.

I'm being lazy this afternoon.  The house is quiet.  Feels weird to have Luther missing.  I've gotten used to him here.  I like him here.  

There are two other guys in his room.  Neither have wives or girlfriends or kids.  It's sad.  I was thinking of bringing each a little get well gift.  How lonely to be sick and have no one to worry about you.

I posted what was happening to Luther on Facebook.  I texted friends to let them know what was up. Instant information.  I debated whether I should.  Not every last thing needs to be told or shared.  But there's something reassuring about being able to let people know what's going on.  Asking for help if needed. Sometimes it's a little too instant?  Too.... hands off?  But in the end, the love and care and kindness that people share - even if it's just a quick online message - is nice.  It feels good.  Yesterday, it felt necessary.

Going to get ready to go visit.  I miss Luther.

Saturday, March 1, 2014

Two a.m. scary thoughts (same day) Man down....

What a scare.  This is hard.  I type this in tears at 2:16 a.m.

Nice night out with friends; dinner at their house.  We had fun.

Got home, parked the car.  Luther went ahead of me.  I was texting one of the girl's I'd been out with so it was a minute before I got out of the car.

Rounded the corner to our place, the door was open.  I got closer, the diet coke we'd bought was scattered all over the floor.  I realized so was Luther.

He was on the floor choking.

This is our life.  This is it.  Super panic but try to stay calm.  Can you breathe?  Can you breathe?  I kept asking him, trying to hold his head to see if I could steady him.

Get me off the floor, he said.  Or gasped, really.  It's cold.  I have to get up.

We tried.  Several times.  He couldn't get up.  For lack of a better term, he was dead weight.  I got a chair, thinking he could use that to grab.

But I had to get his arms up to the chair.  Pull on his hips, get his hips square - he was all heaped in a tangled up mess.

Still coughing, choking, gasping for air.  I told him to kneel for a moment, catch his breath.  No, no, I want to get up.

He thinks he's bruised some ribs.  His whole side hurts.

We got him up two flights of stairs (damn townhouse!) and in to bed.  My trooper.

I can't sleep now.

Other than the day of the diagnoses, this has been officially the most scary moment so far.

Bracing for things to come.