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.

A link worth reading

http://www.today.com/id/51147520/ns/today-today_books/t/until-i-say-good-bye-living-love-face-als/#.UyB0xz9dWSo

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.