Monday, January 18, 2016

Random Stuff

1.  Eulogy for Luther's hands

At 2:55 today, January 17, 2016, Luther let me know his hands and arms were completely dead.  It happened slowly, over time,  First his shoulders, his right arm, then left arm.  The last couple months, he's been able to use his fingers to hold the remote to his chair and to the tv.  And to smoke.

The remote stuff stopped about 3 weeks ago.  He still holds the remotes, like some sad life preserver. It makes him feel better, so I pretend I'm adjusting them just right and he thinks he has some control.

Imagine that.  No control over anything. Haha!  And having to depend on me to change your channel, wherein I make a comment about every show we click through.  Reminder to self:  Just quietly change the damn channel.

We were at a gas station in Newnan, GA when he told me his hands were dead.  I actually cried - it was the way he said it.  Where we were.  How hard the last couple days have been on him.  I looked at him, so small in his wheelchair, in the parking lot at this gas station.  This man I love so much.  I want to give him back his hands.

2.  Breathing/Coughing

At the last clinic, in November, Luther's breathing capacity remained at 60%.  When he was first diagnosed with ALS and they did a bunch of baseline tests, his breathing was at 87%.   I guess it's called FVC - Forced Vital Capacity - how much air your lungs hold.  60% isn't great but it's held steady at 60% for the last 6 months.

I'm curious to know what it is now.

With ALS, you lose the capacity to swallow. Right now, Luther eats what he wants.  The time it takes him to eat is much longer than even a few months ago.

He's very careful to chew slowly.  He's careful to eat things that aren't too thick (ie, an awesome piece of french bread or a thick bagel). The speech therapist showed him how to lower his chin to his neck when he swallows so he won't choke.  I'm careful to cut his food in to really small bites.

Chewing makes him tired.  At times, he breathes heavy, like he's run really fast, just because he's chewed too much.

He coughs a lot.  It's a gross, "wet" cough, full of gunky phlegm.  About six months ago, he could cough up that junk.  Now, he has this soft, really weak cough and at times, I want to pound him on the back to get that stuff out.

With ALS, it's possible your speech goes because you lose control of the muscles in your tongue. Lately, I've had to ask Luther what he's said over and over.  I can't hear him.  I don't know if his voice is quieter -- it's almost like he's losing the strength in his diaphragm.  Especially when he's tired.

Sometimes I just think it's me, looking for the next thing to happen.

3.  Rollin'  rollin'  rollin'

Luther's wheels have been outfitted with this crazy headset.  Since he's lost use of his hands, he can't use a joystick to propel his chair anymore. He tried using his feet but that just didn't work at all.

He doesn't want me pushing him around!  So the awesome OT crew at the VA rigged his chair up with the headset you see in this picture.

It's a monumental pain in the butt - or maybe his head!? - he has to focus so hard just to turn a corner.  He pushes his head back to go forward and then left to go left, etc. Think about it, though.  We don't really talk when he "drives" -- it takes too much concentration. He's worried he'll run in to a door, over someone's toes, in to the table when we go out to eat.  It's tiring to watch, but he's a champ.

4.  I love Luther

This is such a weird place to be.  Right now, I'm sitting in a motel 8, it's 2 a.m.  Luther was asleep but his electric blanket got too hot and he freaked out.  He thought he was trapped.

Ok wait.  I didn't mean it was weird to be in a motel 8 with Luther.

It's weird to think - after being single forever - I'm finally crazy in love with this gentle, patient, awesome guy.  Who's dying.  Who's deteriorated right before my eyes.  That's the weird place.

In sickness and in health.

Every day I think I cannot do this.  I can't live up to this.  I'm not a caregiver by nature.

I know people have worse things.  I know everyone has a burden to bear.  I don't corner the market on sadness or frustration.

But geeze Louise, this is the hardest thing I've ever done.  I love Luther so much and sometimes I don't know how to make him feel better.  I can't take away his pain or frustration.  Sometimes I just sit, feeling idle and helpless.  I'm his full-time caregiver and often time, I suck at it.  I hide away from him -- he naps a lot and I kind of hide away, letting him.  I'm not sure what to do.

Other times, I make this full-out effort to be Mary Poppins, Florence Nightengale and a sexy Stepford Wife all rolled in to one.  It doesn't really last long because generally I don't get out of my pj's until 3 and I'm lucky to brush my hair.

I suppose there's a middle ground in there somewhere.

All I know is that I look at Luther and I think I can't love him any more than I do.  My heart feels like it will burst.

But every day, I fall in love with him more.  Even when he pisses me off, which happens more and more lately.

This crazy sense of control he wants to hang on to.  I want to take his pain and frustration away and he wants to hang on to it, like some medal won for going the distance.  I get it.  I do.  Which is why I love him more.

How can I not live up to this awful disease?  How can I not be Luther's hero?  He is certainly mine.  I thought we'd be partners in crime as we grew old together. Now I just hope we get through the day.  And when we do, it's awesome.

Saturday, January 9, 2016

Tales from the front...

From me:  

It's been well over a month since I've posted here.  I want to write positive, happy things.  I want to say I'm giving Luther the best care, the best life.  I can't do that.  Each day is slow, long, tiring. It's so cold.  It's quiet.  We can't get out.  So I don't write.  There isn't much to say.  

We leave for Florida in less than a week!  That IS exciting news.  We're both hoping for new perspective, new energy.  Just being warm.  Luther's been cold since last year - he never got warm this summer in Minnesota.  

The following are little snippets from other caregivers.  I'm in a couple online support groups.  I find them very helpful; it's good to know there are resources out there for support and advice.  At times, though, it's heartbreaking and a bit scary to look in to a crystal ball and see the future.   These were taken from the last month.

From others:

How long? I wish I had some idea. Down and down and down we go. Each day a little weaker. Each week a little more unbelievable. Options neck down; what worked yesterday doesn't today. Yet we go on because she's still here.

Think I'm going crazy. I really beginning to wonder if I'm strong enough.

Does a PALS being "ready" to be called home have any impact on when they pass? My mom told me today that she is ready and then proceeded to give me a few funeral details. She is completely dependent but her breathing is still good. Isn't breathing what "gets" them? I just feel so bad for her and so helpless, she's just laying there waiting to die.

My pALS passed away in December. My faith for his healing never failed, but God had other plans than the one I cried out for. I would have championed as long as it took to save him but instead we lost this battle and he drew his last breath with me by his side. He is safe in the embrace of Our Saviour Jesus and so I rest in the fact that I will one day see him again. Our young children and I are grieving our loss and are truly devastated. I had hoped that together we could have found a cause for this illness, something that our pALS shared in common that brought this illness on. Thank you for all for sharing your journey and providing insight and help where you could. Be blessed.

I am so sorry for your loss. My husband was convinced that wasp therapy was the cure. We spent the summer before he passed catching wasp and stinging him in his muscles. I really do believe it helped some. It is a long story, if you ever want to compare notes you can pm me.
Thank you for your heartfelt words. If I had more time I would have continued with the honey bee stings following the protocol on Healing Lyme with Bee Venom Facebook group. I have such confidence it would have made a pALS just ran out of time time...  

Need some advice please. Mom battling terribly with urine incontinence. She is using nappies (diapers) but keeps on getting a feeling like her bladder is pulling. These spasms are becoming extremely painful. She tried a catheter last week which only resulted in loads of pain. Perhaps damage from catheter caused inflammation of urethra? There is some fresh blood in nappy. Tested urine for infection, all seems clear?? She has constant tribe flow that we find difficult to keep up with. Change her nappy constantly.


Sorry for posting so much today. My husband has been having so many secretions lately. I'm constantly doing the cough assist and suctioning. Is this just the progression? There just so much mucus.

Taking care of an ALS patient is like taking care of a baby that never grows up...sigh.


Hospice - Tomorrow we are entering into hospice for my wife, my pals,my love. This step, this final step Is what we need so badly right now. A few months ago, my wife would have nothing to do with it - now she is ready, she knows where she is and the road ahead and she knows we need help. And she is scared, not of death, but of the dying process, and the loss of clarity of mind that morphine could bring.


It's not good when you realize, as you're getting your PALS out if bed, that you're already sick and tired of the next 14-16 hours and they haven't happened yet.


 OMG!  I heard something & went running into our bedroom! There's my PALS laying on the floor with poop everywhere!  His caregiver (AM shift for: bathing, etc...) is freaking out & says: "His legs aren't working"!  I run to the guest room to get the hoyer lift - come back into the room & the caregiver turns around bumping my coffee cup all over my jewelry on the dresser!  In the mean time my PALS is laying in feces & is having a very hard time breathing!


I know every pals is different but how do we know when we are near the end?