What to write? What to write? Guilt, frustration, boredom, more guilt. Same 'old story.

We're in Florida, hanging out.  It's a perfect day.  Humidity gone, low 80's, sunny.

I'm watching Dateline in the living room.  He's in the bedroom watching American Dad.

Does something seem wrong with this picture?!

I'd love to throw him in the van, go to the beach.   Maybe we should. Everything's been a little rough lately.


We spent the weekend in the ER. He doesn't eat or drink enough water. Says he feels full, like throw up full.  I cannot get him to eat.  People tell me to make him eat.  How do I do that?  I've begged, yelled, been sweet, offered him up donuts.  The doctor in the ER told him TO EAT. DRINK MORE WATER.  I hate that I'm not someone to listen to but the doctor is.  Well.  I suppose he is a doctor.  Qualified and all...

TMI - He was constipated.  5 days later, he's still not eating.  The constipation part has been remedied but... for a guy who's supposed to be eating 3000 calories a day, he's eating about 5 - 600.  Because he's still full.  Of what?  Air?  Poop?  What???

It's not that the eating part is too hard -- he's swallowing ok.  Food just doesn't sound good.  Well you know what?  Too dang bad. If you want to stick around longer - you gotta eat.  I finally told him he's a grown ass man, he can figure this out.  Tell me what sounds good.  Help me out.  I make stuff, he doesn't like it.  I go to the ice cream store to get a shake, doesn't want it.  I go to the "sure things" - peanut butter cookies, pound cake.  That's all he eats.  Seriously.  Two pieces of pound cake a day. Two peanut butter cookies.

I've kind of - at least for today - given up.  Eat, don't eat.  I can't fight this fight alone.  I don't want to spend my time arguing, begging, getting both of us upset.  Let's relax.  Enjoy the sunshine.  Enjoy each other.

He has a feeding tube.  The last few days he's taken water through it with Miralax.  That's a step in the right direction.  Prior to ER, he wouldn't do it.  Now, he sees the serious side of this.  Taking an almost 2 hour drive to the VA ER wasn't fun.

Baby steps.  I'm tired of finding sneaky, creative ways to get him to eat and drink.  It tires me out to be constantly scheming, worried, angry.  Even today, on this nice day - I'm wiped out and I haven't done anything.

I asked if I could move his arms around.  Rub his shoulders.  No.  Everything is no.  I quit my job to be here, take care of him.  Make him feel better.  He doesn't let me.  So I shut down.  I stop asking. It's a weird cycle -- sometimes he wants help but is afraid to ask because I seem so tired.  I want to always be on, be up, be happy.  Mostly I'm quiet, always waiting for the next request.  I don't ask because most of the time the answer is no.

The breeze through the open door feels good.  It's a perfect day outside.  I'm going to go smooch Luther, see what he needs because that's what you do.  Never stop asking.

ALS Guardian Angels

Last August, during "every August until a cure" - when I got the bright idea to take the ice bucket challenge every single day in August!!! -- I asked you to donate to the ALS Guardian Angels.  

While research is necessary (which is where the bulk of the original ice bucket challenge money went) - my heart goes out to the people who are directly in need RIGHT NOW.  People who can't afford a ramp, can't afford a wheelchair or a van, who can't afford to hire a home health care worker.  

The ALS Guardian Angels is one of the grassroots organizations who does offer immediate support in the form of monetary grants, equipment, support in finding assistance.  

Unfortunately, the man behind ALS Guardian Angels unexpectedly decided to shut down his organization at that time.  ALS is a cruel, ugly disease.  There is no cure, no treatment.  My heart breaks a little more every single day with Luther.  I can only imagine trying to reach out and help so many people with so few resources.  

Click here to go to his site and donate, if you can:

http://www.alsguardianangels.com/

Here is his story.  I ask you to take a moment to read it.  

A SLAP IN THE FACE

The human mind works in strange ways. At least mine does. I started The ALS Guardian Angels to help those that I saw as the most helpless among us. And to feel good about myself. I didn’t look at it as a sacrifice. After all, I had plenty of time. And I could afford to help. So I did. 

Year after year I saw what I could never have imagined. People choking on their saliva. Once vibrant individuals lying on their backs staring at the ceiling. Day after day. With no end in sight. Proud adults suffering the indignity of having their diapers changed by their spouses. Or their children. Or complete strangers. People suffering in ways the public never imagines. 

Did you know that there are four degrees of bed sores? First degree. Second degree. Third degree. Fourth degree. What could a fourth degree bedsore possibly feel like? Who ever heard of such a thing? 

I thought I had the strength to handle seeing the obvious horrors of ALS up close. And I did. But it was the less obvious horrors that got to me.

ALS exposes a person to a whole new world of suffering. It goes far beyond losing the use of one’s limbs. Or ability to speak. As I sit here, I am consciously trying to avoid swallowing my saliva. One minute. Two minutes. That’s it. Beyond that I feel as if I am drowning. Think of what it would be like to have a cold and not be able to clear your throat. Or cough. Or have a rash you can’t scratch. Or a bulging disc in your neck from lying in one position. And not even be able to move your head to relieve the pressure and ease the pain. 

Our ability to act reflexively evolved as a survival mechanism. We never think about it. That is until the ability to act reflexively is taken away. Then a minor irritant can become an all-consuming horror. We feel as if our very survival is at stake. 

People survive waterboarding. But they feel as if they will drown during the process. And panic sets in. Now try lying on your back. Don’t swallow. Don’t clear your throat. Don’t cough. Let your fluids accumulate in your throat and chest. You can’t. Many ALS patients don’t have a choice. Now try it the next time you have a cold. Waterboarding ends. ALS doesn’t. I could go on and on without scratching the surface. But you get the idea.

When it’s called to our attention, we can at least grasp the magnitude of the physical anguish an ALS patient suffers. And shudder. And grimace. And shake our heads. 

But what about the psychological pain? We simply cannot get into a patient’s head and imagine what they are thinking. And more often than not, that’s all they can do. Think. I can’t begin to imagine where an ALS victim’s mind may wander. As they ruminate on their condition. Their future. Their present. And how it is affecting not only them, but their loved ones. 

Have you ever been depressed? Not sad. But suffered from full blown depression. Where you wake up wanting to cry. And spend your day fighting to hold back the tears. You think the pain can’t get worse. But it is a walk in the park compared to what an ALS patient may suffer. 

Psychological pain is hard to describe. It’s even harder when you can’t communicate. Let me give you an example. One of many. And not the most extreme. 

ALSGA had a patient who was at the latter stage of ALS. He had been locked in and helpless for years. He had a traditional marriage. The man provides and the woman takes care of him. But he could no longer provide. And they were destitute. But his wife still cared for him. Every day. Every hour. Every minute. For years. Until finally, she couldn’t take it. She called 911 and left her address. And then killed herself. And left behind was a man who could do nothing more than stare at the ceiling. And think. And suffer. Now think about the same man. Except he has no one. Just four walls and a ceiling. In a cold institution we refer to as a nursing home. His human contact consists of an orderly that comes in to change his diaper on a schedule. And do other chores that do no more than maintain his existence. There are hundreds of patients in similar situations. Maybe thousands. We’ll never know. They can’t reach out. And the ALS charities and associations don’t look for them.

Einstein said everything is relative. But ALS takes relativity to an absurd extreme. An ALS victim with a loving family that is willing to care for him until the end is considered “lucky”. I hear it all the time. And I guess he is ”lucky” relative to the hapless soul mentioned in the previous paragraph. 

But think about it. A person is locked into a life of physical and mental anguish. At the same time his family is locked into a life that becomes vastly different than what they could ever have imagined. His prison becomes their prison. His anguish becomes their anguish. And ALS devours all of their assets, dreams, and financially security. In the world of ALS, this is being “lucky”.

I began this rant by saying that the human mind works in strange ways. I’ve been a firsthand witness to the horrors of ALS for years. But I’ve never had a family member or close friend afflicted. You can say it hasn’t affected me personally. I live in a beautiful house. I have the love of a wonderful woman. My health. Good friends. Financial security. And a dog that can melt my heart at the wag of her tail. 

By any stretch of the imagination, I am one of the lucky ones. But like I said, the human mind works in strange ways. And in August of 2015 I began feeling sorry for myself. I lost sight of what was important. ALS. The suffering. The anguish. The pain. And that through ALSGA, I was in a unique position of being able to ease someone’s misery. But it became about me. And the bucket challenge funds we never received. And the donations or lack thereof. Never mind that for some reason, God or good fortune or circumstance or whatever you want to call it, gave me a gift. The gift of being in a position to give without sacrifice. Never mind all that. I’ll shut it down. And so I did.

Sometimes a symbolic “slap” in the face can make someone see reality more clearly. And my symbolic “slap” in the face came in the form of a phone call from Becky Gasper. And my reality is that there are people who give of themselves far more than I do. Even though they have much less to give. And Becky Gasper is such a person. I know that we will never be able to adequately help all of those who come to us for help. And there will always be a backlog of deserving grant applications. And desperate phone calls that need to be returned. But from this day on, if you have been helped by ALSGA, it is because of Becky Gasper. And a “slap” in the face.

Another point of view from another caregiver

This is a post from a Facebook friend whose husband has ALS.  They started a non-profit foundation called Matt's Place.  So many families are unprepared for the expense of dealing with ALS - from ramps, remodeling bathrooms, wheelchair access.  

They started a non-profit foundation called Matt's Place.  Here is a link to their foundation for more information:  http://www.mattsplacefoundation.com/

ALS fact of the day - this is slowly becoming a fact of the week instead of a fact of the day.  Trust me, it's not for lack of things to talk about!  I just debate on how much information I should share or what anyone really wants to read on a given day.  

I cannot explain how the days are high to love to high again, in some weird bipolar plunge of emotions. (I suppose there are drugs to help.  But the idea of going through this completely numb, although appealing in so many ways, doesn't seem like an option I want at this time.)

Is it because I am with someone who is dying?

I have an image of myself in some strange cartoon character, walking along, happy as can be...hips swaying, arms swinging, whistling my little tune, a smile on my face...happy as can be...

Then, without warning, I fall into some strange pit...I logically know that all I need to do is climb out and I'll be on my way again...but I'm stubborn...I don't want to ask for help and I want to do it all by myself...

After a few days, I climb out...I feel better....proud of myself for doing it all by myself...but angry as I look around, noticing everyone just walked by me...

Why didn't I ask for help?  Why didn't they see I needed help?

But then, I go back to being my happy self again...start walking, swaying my hips,swinging my arms and happy once more...until I fall back into another pit...

That is the only way I can explain what happens.

I get sad...angry..frustrated...overwhelmed..

Sometimes when Matthew and I are talking, I can't imagine how hard this must be for him...I think sometimes he looks at me and feels the same way.

Each of us are alone in what we are going through, no one around us can relate or understand, and each of us feeling like a burden to others...

So, when I fall into my pit, I need a few days to just be angry, and sad, and lonely in my experience...

Thankfully, when I dig myself out, Matthew is waiting for me, there for me to lean on...

I promise tomorrow, I'll write about something happy...

Happy - almost - birthday to Ed!

You all know Luther is Ed - Ed is Luther, right??

Ed's real name is Luther.  As a kid, he was Eddie.  In the Air Force he was Cutch (rhymes with hutch). Our last name is Cutchins.  As a grown up, he's Ed.

When we first met, we had several other friends named Ed.  He wanted to use his given name - Luther - so for the last couple years, he was Luther.  We tend to go back and forth.

Now that's cleared up - it will be Ed's 62nd birthday on April 7.   I am going to make him a virtual birthday card from his friends, family, co-workers.

Because he can't use his hands, he stays off Facebook and email and I know this keeps him far away from his friends, family.   He misses his co-workers.  He misses friends.  I know he'd be so psyched to get a birthday greeting from you all!!

We did get his wheelchair hooked up with blue-tooth and technically, he's supposed to be able to get on his phone or computer.  But he had to use his head to scroll and he was bouncing off his head piece like crazy.   His head piece beeps whenever he presses against it so it was like beep beep beep beep over and over trying to read Facebook.

The whole point of this is to ask those of you reading to rally and send me a short video wishing Ed a happy birthday.  You need a smart phone for it!  I'm going to link all the videos together in to one virtual birthday card.  I figured out how to do it -- I'm pretty excited about that!!

Send your video to lynn.schlieff@gmail.com in the next week.

Thanks everyone!!!