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.

On vacation!

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

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.

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...

Connections

I'm meeting with Barb Brandt this Friday:
http://www.startribune.com/obituaries/detail/13999710/?fullname=michael-f-brandt

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:
http://www.edenprairienews.com/news/people/i-ll-be-just-like-granny/article_c399f3e7-94ee-562e-b9ba-c99a32cfa20f.html?mode=image&photo=0

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.

From my niece, Molly

A surprising, wonderful post from my niece, Molly's Tumblr page:

http://sexynyancat.tumblr.com/post/70326074338/love-you-auntie-lynn

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.