Sunday, December 6, 2015

apparently I'm on a blog break....

Well - I can't say I've been "present in the moment" of my gratefulness.  I started off with such a bang!!

Lately, though, it's just trying to get through the day.  Not in a bad way - just the regular way.  One foot in front of the other.

People always say to take "me" time. I get that -- if something happens to me, then how do I take care of Luther?

The thing is, what exactly is "me" time?

I keep saying I want to take a weekend at a hotel and just sleep. To be honest, it's mostly wanting to be by myself.

As much as I love Luther, I want to sleep the night through.  Sleep as long as I want.  Feed only me.

I think, though, I'd miss Luther too much.  I like being with him.  As bogged down and robot like as I feel sometimes, I'd rather be with him than not.

Things are good.  I'm really tired still and pretty sad these days.  I don't want to go out.  I don't think it's because of the sad feelings and tiredness.  Maybe a little.  It's mostly because Luther can't be alone anymore.

A couple times, I've left him for two hours.  I've been able to do that before.  My "me" time -- I'd leave for a few hours, run around, take some time to myself.  The last time I left him alone - this past weekend, I came home and he was sick.  Nauseous, anxious.  I felt awful.  He needed to drink, he needed to eat, he needed the blanket off him.  He can't move,  What was I thinking?

Writing here feels like homework.

I quit going to the Emily Program.  That felt --- like homework?  Like too much.  Emily Program is the eating disorder place.  I know why I'm eating too much!  I just have to stop.  Either stop or don't, right?

At times, I feel so tired I can't do much.  I can't type.  I can't talk.  I can't make dinner.  I don't understand it.  I'm therapied out.  I take drugs.  I go for walks.

Sometimes it's all just too much.

Monday, November 16, 2015

Days 2 - 4 - GRATITUDE!

The biggest deal in the last couple of days has been SLEEP!

Luther and I went to a casino to see a comedian and we decided to stay overnight.

It was tricky since it was the first time he was out and about in the wheelchair using his head to move it forward.

The best way I can explain it is when you ride a bike and you want to take a right, the bike is still moving forward.  With his chair, he has to come to a complete stop and then turn, so it's very jolting.

He looked drunk, moving his head this way and that.  Practice will make perfect!

All in all, it was a really good time. We enjoyed each other's company, it was relaxing, the show was great, we smooched a little and we slept and slept!  It was wonderful.

The other big deal is the weather!  Aren't we all grateful for this weird, warm weather?  It's been a blessing for us both - it's so much easier to get around in the chair.

We had a conversation about moving to Florida for a year or so.  Luther said even this summer was too cold for him.  He got sick in July, he was hospitalized twice and he felt like he hasn't really recovered.  The heat in Florida just warmed his bones and he felt so good.

We're incredibly grateful we have a place to hang out in Florida and we'll be heading south again in January.  We'll make a decision about staying later, once we're there and see if Luther starts feeling better again.

Grateful recap:




Thursday, November 12, 2015

Day 1 - Gratitude

ˈ            ɡradəˌt(y)o͞od/
  1.            the quality of being thankful; readiness to show appreciation for and to return kindness.
               "she expressed her gratitude to the committee for their support"
              synonyms:gratefulness, thankfulness, thanksappreciation, indebtedness; 

Gratitude - Day One
Ok, I'll just get it out there.  I woke up today in a pretty sh*tty mood.  Second really cold day, gray, rainy.  I was tired.  I never get a lot of sleep.  4-5 hours, usually interrupted.  My therapist mentioned if I just got a week or two of normal sleep, I probably wouldn't need therapy!!  

Recently, this past weekend, someone from an ALS group I'm in online died.  His wife posted this sentiment from his Facebook page:  when he was six years old, he would wear his shoes to bed because he was so excited for the next day to start!  He wanted to hit the ground running.  

That made me smile and it made me think about how I need to rethink!  I tend to drag around in the morning - hard to get started. Maybe it's time to get out of bed and enjoy the day.  

My gratitude today is the fact I have an awesome husband who is patient, kind, smart. Through all of this, he's been a rock.  My life preserver.  When he should be the one falling apart, he's constant. 

I should say that the stuff I say in this blog is NOT the stuff I say to him.  With him, I'm (usually) happy.  I use the blog to vent whine vent.  I do discuss the more serious stuff with him - the depression, the times I need help with his care.  Back to being grateful:  how lucky am I that we can face this awful illness together?   We're a good team.

Wednesday, November 11, 2015

30 Days of Gratitude

I'm sitting here on this cold, rainy night eating a peanut butter cookie topped with a chocolate kiss and I'm thinking - does life get much better?  My husband is in the other room under his electric blanket, snug as a long skinny bug.  We have nothing to do tomorrow:  no appointments, no obligations.  

Life does NOT get much better than this.  Simple things.  Living for the moment.  Being in love. Feeling secure.

I'm tired of being sad and cranky.  What is the saying?  I'm sick and tired of being sick and tired.

It's time.  Time to flip the switch from this constant sadness to a little bit of happiness. Which, hopefully will lead to a little bit more happy. And more....

I read this:  your level of happiness is in direct proportion to your level of gratitude.

I have a ton of stuff for which I'm grateful. I'm a pretty lucky chick. 

I know that right now is just a moment in time.  Weekends get tough.  Endless hours of not leaving the house.  The walls close in. I have at least 100 things I could be doing but I feel like I cannot do them.

Depression is the weirdest feeling. It's like I get stuck in cement and it's so heavy.  I cannot, I really truly feel like I cannot lift my arms to fold laundry.  I know I can. In the front of my brain I say over and over:  get up, lift your arms, stop being a wimp, stop being a baby.  But depression isn't rational.  It doesn't work with the front of your brain.  It lurks around in all the other dark spaces.  Therapy has taught me how to get out of it. It takes a while.

So I had this little chat with myself.  Luther is the one who cannot lift his arms.  I bet he'd give a million bucks to be able to lift his arms.   Be able to feed himself.  Get his life back.  I cannot let the weight of my feelings prevent me from lifting my arms.  I AM Luther's arms, for goodness sake.

Even though I know this depression is lurking around the corner, just waiting for the chance to mug me when I'm not looking, I'm going to take the next 30 days to be happy.  Do you think it can happen?

Some days might be fake.  haha!  Some days WILL be fake.  My goal is to get out of the rut, realize what's in front of me:  a husband I love, a supportive family, great friends.

Today, I'm grateful for the fact it's raining in November, that my husband is safe and warm and I'm really grateful for this awesome peanut butter cookie!

Sunday, November 1, 2015

get your happy on - UPDATED

This just isn't working.  I can't figure much out.  Been in therapy for over a year.  Started seeing MORE therapists at some eating disorder place.  Went out and bought a box of Lucky Charms and ate 3/4 of the box in one sitting.  Something ain't working.

The food therapist said I need to watch that mindless eating.  I just laughed and said it was VERY mindful!  I made a point of driving to Cub and finding that box of Lucky Charms and really enjoying sitting down and eating it.  It was a well thought out plan.

I dislike everything.  Every single thing.  I can't find anything I really like.  There are things I love like Luther. My family. So I'm not looking to jump off a bridge.  I've felt that way before and this doesn't feel like that.  It's almost worse.  This feels endless.

What to do?  Just go for a walk?  Get over myself?  Stop whining?  Start a grateful journal? Eat an apple?

I started anti-depressants.  Hopefully that will help.  I'm not sure I'll stick with the eating disorder thing. It just feels like too much therapy.  Even the food therapist agreed it was a lot of analyzing. She made the observation I might feel a little "prickly" with all this reflection.  I've been a dang cactus. Prickly, angry, annoyed.

This is very unhelpful for Luther.  I think he gets scared to ask me for help.  I suppose if I keep rolling my eyes when he asks me for stuff...

It's hard though, to know I've quit my job to be his caregiver and he doesn't want me to care for him. It's minimal care.  Help him pee.  Light his cigarette.  Feed him.  Put on his blanket. That's about it.

What to do?  Put on my sexy cheerleader outfit and get all "yay rah rah?"  (I actually don't own one) Insist on caregiving - just set the schedule and do it?   How do I get him out of the house and interested in things?  Do I invite people here?  Half the time he won't talk.

I think it's just one foot in front of the other.  Just keep plodding along.  Let things happen.  What else is there to do?


I went for a walk this morning, still thinking about this post - how can I change things?  We were up at 3:30 this morning (went to bed at midnight) - then again at 6 a.m. when he's up for good.  I make him coffee, he smokes :( :( :(   then I try to go back to bed but it never works -- took the dog for walk.

Around 8, I climbed back in to bed, thought I'd try to sleep.  At about 7:30, asked Luther if he wanted to eat, need another cup of coffee?  No, no, he's fine.  Guess what?  At 8:10, as I was falling asleep, he wanted to eat, wanted that extra cup of coffee.

People will say, oh I can relate - it's like having a toddler.  No sleep, You're on their schedule.  But you know what?  Your toddler has a future.  You feel hopeful, even through your sleep deprived crabbiness, that your kid will grow up.  I feel hopeless.

Sure, my goal each day is to give Luther some level of happiness.  Make him comfortable.  I totally get that he's alive now.  Live for today.  Figure out a way to see a movie, hold hands.  You know what he wanted to do the other day?  Shop for funeral homes.

The changes are subtle but they alter us tremendously.  I asked him if he could stop walking, would he? He said yes.  But the alternative of me using this lift with a sling to lug him out of his chair just to pee or smoke seems worse.

This is a hoyer lift.  We have it in our house now, part of the furniture, I guess.

I took a selfie of me on Halloween and if you look closely, you can see the lift and his wheelchair in the background.  I doubt anyone else noticed but it made me realize our slice of my parent's home is riddled with medical equipment.

Anyways - this is the lift.  I don't wear a white uniform.  I think you can see why Luther keeps trying to put one shaky foot in front of the other to get to the bathroom.

There's actually a slit up the butt/backside so you can just do your business out the back once you're lowered on to the toilet.

I haven't really made a clear pathway from his bed to his chair to the bathroom quite yet.  We need to practice using the lift before it's an emergency.  We both keep putting it off, as usual.

I'd love to say a new day = a new attitude.  As I was walking the dog, I thought - I'm grateful it's really nice out today.

That's all I could muster.  I know it seems selfish.  I know.  I know.  I know.  That almost makes this sadness worse.  If I could live in blissful ignorance - would that be better?  I get that this is about Luther, not me.  He's the one dying.  I am so thankful we're here together.  Saying all of this out loud makes me feel so selfish and weak -- tired and defeated at times.  But we have a long road ahead of us.  I have to figure out how to deal with these feelings.

I'm supposed to muster up the energy to do stuff.  Power through.  Just do it.  Get it done.

I will.  Eventually, I do.

Friday, October 23, 2015

How do you know?

Luther just told me he thinks he's near the end.

What the heck?  What?  I'm scared out of my mind.  A few hours ago, we were laughing, having a nice evening. 

Now, he thinks he doesn't have much time left.  He thinks his body is shutting down.  

I don't even know what to think.  Other than I should stop typing and go figure out what's going on.   Be with him.

Every night I think:  tomorrow's a new day.

Please let tomorrow be a new day.

update:  12:27 a.m. --  This was a moment.  He's ok.  He still hurts all over.  He's a frugal medicine taker... I'm all about meds making me feel better but he'll only take what's prescribed...  I gave him an extra muscle relaxer and he seems more relaxed, not as anxious.  Plus he wants to eat.  He's thrown up a couple times today :(  :(    That landed him in the hospital twice back in July.  But he's ready to eat some ice cream now.

update #2 - Sunday - It's a quiet day.  Luther feels much better. Still sore but in a good mood.  Luther and the new dog, Mia are sleeping.  I'm so happy she's becoming his lap buddy!  

I've been a momma bear since Friday night - watching over him, making sure he's breathing.  I'm wiped out emotionally and mentally.  I know I have to get mentally prepared for this kind of stuff.  How do you do that???

Luther was talking to me earlier this afternoon and I fell asleep as he was telling me something about football.  That's tired!!

We'll figure it out.  We always do - sometimes it just takes some doing.

Monday, October 19, 2015

I don't come here much anymore...

I don't write here much anymore.  And no on reads this much anymore.

Tonight, I had a breakdown because I had to make a pronto dog.

I can't find Luther's sheets that are always, ALWAYS in the closet and they're not there.

Where is the dog's leash?  I just used it a few hours ago and can't find it.

Every day is like this.  Endless.

I'm tired of bitching about the same 'ole shit.

I'm so tired.

I'm not sure I can live up to this.

Thursday, October 8, 2015

Stages of ALS

Someone else wrote this:
Keeping everything afloat
Dealing with it
Major changes
Little victories
The end of the beginning
A place in the sun
What worked before is lost
The begging of the end
Nothing works any more
Starting to say goodbye.....
If I had to put the last seven years into chapters these would be the titles. It's so close, so real, so f#‪#‎ked‬ up. I thought we were supposed to live happily ever after...
It's all so wrong, it's all I have, and soon it will all be gone.....
I think Luther and I are at the "place in the sun" stage...

Saturday, October 3, 2015

Anticipatory Grief

Why is anticipatory grief so powerful?

illustration of a blind folded girl sitting with her back against a heat to represent grief
Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.
To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.
Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.
Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.
Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.
Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.
The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.
Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.
Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.
There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”
Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.
You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.
Understanding anticipatory grief can keep you going too. Joining The Caregiver Space support groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.

Monday, September 28, 2015


I haven't written much lately.  I think because my emotions are buried somewhere so I can't find them.  I get tired of being tired and sad.

I suppose we don't vent about the good things, right?  How often does someone call you to say, hey! I'm having the BEST day.  Maybe we should do that more!

Someone in an ALS group posted this:

I've talked about this before - how with a long term illness - I imagine even with a chronic but not terminal illness - you experience these stages of grief and loss all the time.  A friend, whose husband died of cancer several years ago, sent me an article called "Anticipatory Grief."

I thought this was such a great way to think about this sense of loss.  We sit and wait for the next thing to happen, the next change.  It's a sh*tty way to live.

So instead of sitting around and waiting and moping and crying (which I still do...) - we try to grab on to the good things, the things that keep us afloat.  Little life jackets, I guess.  The things that keep us from sinking in to a deeper depression, that keep me from falling apart on a daily basis.

Luther's ok.  Last night he just puked forever.  He'd done this back in July and ended up in the hospital twice.  They couldn't figure out what was up.  Then we had two months of no throwing up and BAM - last night it was awful.  I was in my room (we don't sleep together - another loss...) and I didn't hear him.  All of a sudden I heard a weird sound and ran out.  Man oh man!  He was a mess.

My poor guy.  Can't move.  Sitting straight up, puking down his shirt.  I felt so awful.

The other night, he said he was calling for me for about 45 minutes.  I didn't hear him.  He was in bed and needed to get up to pee.  I mean really.  What an awful feeling.

Maybe time for a baby monitor??

Luther's usually such a trooper.  He's my rock.  I try to be one for him too but I'm more like a pebble. I get tired easily.  Worn down.  I know my mood affects his.  I've been retreating more and more and I know this is really bad for our relationship.

I think, at the heart of it, is I'm scared that if I let myself feel how much I love him, the hurt of seeing him so helpless will be too great.  If I just keep a wedge between us, I can protect myself from that level of hurt.

Which, I know is a big fat lie.  That wedge also prevents us from feeling happy too.

That's the thing with burying negative feelings.  You don't get to pick and choose which feelings you hide.  You end up burying all of them and NOT feeling anything.

In order to feel love and happy and joy, you have to experience the sadness and the hurt.  Years of therapy taught me this :)   So even though I start building a wall against feeling the bad stuff, I generally find a way to stop building it too high and I share those feelings:  here in this blog, with friends or family, with Luther.  I've learned that sharing this burden of sadness creates space for light and happiness.

I do think it's important to share the good stuff too.  I've read through some past blog posts and it gets really old really fast - the same concerns, complaints, whining, venting over and over again.

How do you get out of it, though? How do you process those feelings? It's a fine line between wallowing in self pity and recognizing true grief.

Life moves along, though.  I'm not the only one with issues.  I need to be a good friend, a good sister and daughter.  I need to be a better caregiver and more important, wife.

This is all too profound for a Monday morning.  I think it was the throwing up -- it got me to pondering about all this stuff.

We're actually leaving for a little vacation today - off to South Dakota.  He's never been.  I think Wall Drug and the Corn Palace will make me feel super happy!

Saturday, September 19, 2015


Today was our ALS walk.  It was a beautiful day!  We had about nine people on Team Squirrel and raised about $1800 - so we had many people walk with us "in spirit."

This was our team - both Luther and I were so appreciative of everyone who came out and walked with us.

The donations people made were so generous too.  We asked folks to donate for the Ice Bucket challenge in August and now we were asking for more for the walk!

There were a ton of people out - it was a lot of fun.

Wednesday, September 9, 2015

four in the afternoon

Busy day.  Busy week.  Not used to busy anymore.  Lots of changes.  A little drama.  Am suddenly feeling the need to hibernate.

The changes aren't due to Luther - although he seem weaker, he's in a good holding pattern.  His breathing / swallowing hasn't changed for six months and that's AWESOME.

Isn't it always about me?  This blog, this angst.  I feel guilty about that.

Thank God I don't have ALS, right? Always this overriding sense of get happier,  Find the bright side.   A little Monty Python, if you care to click:

I'm sitting outside after a long day.  It's really nice out.  I have this overwhelming feeling of not wanting to go in the house.  I want to stay right here.  OUTSIDE.  Feeling a light breeze. Sunny but not hot.  Quiet.  Peaceful.  Just me.  I don't want to go in.

I go to therapy and suddenly with the Emily Program eating thing, I go to a lot of therapy.  What one of the therapists said is this how I'm going to feel.   Literally heavy in the physical sense AND the emotional sense.  She likened it to having a sliver.  It hurts like crazy as you poke and dig at it but once the dang thing comes out, relief!!

She said therapy is poking, digging, prodding in to uncomfortable things.  It will hurt for a time.  It's new feelings, unfamiliar situations.  How can it not produce feelings of anxiety and uncertainty?

I liked that analogy.  I get way too consumed with guilt.  It lifted that burden and made me think I needed to cut me and even Ed some slack.

Life is really slow these days.  Different.  It's ok.  I don't have to be out there pulling myself up by my bootstraps or living each day like it's our last.  We can enjoy this slow time, enjoy each other, do a crossword puzzle, hang out on the patio.

Tuesday, September 8, 2015


ALS is a disease of loss.  I've lost my job.  My long-term future with Lynn, my friends and family.  I've lost the use of my arms and now most of my legs.  

We lost the ability to stay in our home and moved in with Lynn's parents. I can't feed myself, brush my own teeth, hold my wife's hand.

ALS has no "survivors."  No cure.  No treatment.  I know my future.  I will become paralyzed yet still feel.  I will lose the ability to talk but not think.  I will lose the ability to eat, swallow and eventually breath.  

This video is from the NFL about ALS. The man who wrote it just died of ALS.  It's what prompted me to write this post.   Click the link below:

Our ALS Walk is coming up Saturday, Sept 19. Thanks to everyone who's signed up and donated. If you could join us, please do. If you can donate, do that. The link is below:

Tuesday, September 1, 2015

Didn't mean to rain on your parade......

Haven't posted here in a while. Things are ok.  Sort of funky.  Feeling hot and slow.  Ed's good - he seems tired too.  He's weird tired, though.  Like he gets these bursts of energy for the things he wants to do but then is tired for anything else.  I suppose that's the disease...

Take going to the state fair.  I do NOT want to go.  I know I'm being selfish.  It's super hot and muggy so there's that.  But more than the weather is the hassle of the wheelchair and the on-going status of his hand.  I thought his hand was pretty much shot.  It is shot!!!  He can move a couple fingers and change the remote.  When he gets stressed, his whole arm will get frozen (you can touch his arm and it feels ice cold) and then his hand stops working.

Soooooooo - in my usual way - I'm thinking about everything that can go wrong.  Crowds, getting on the bus, sticky hot weather, feeding him, going in and out of buildings filled with people, and finally his hand decides to stop working and it's a long miserable trip home.

He is super jazzed to go the the fair.  How can I say no??  It's like this bucket list trip he had to go to Wyoming.  I have to drive he entire way.  It's this amazing drag to think about.  I feel the weight of how much I dislike it pressing on me.  Add the guilt that I'm raining in to his bucket.

He did modify Wyoming down to South Dakota.  The odd thing is, the whole planning falls down on me too.  It's Sept 1 and we haven't made any plans to go.  I suppose I should just sit down and get 'r done in terms of things to do, reservations, etc.   I get a little pissy because he's mentally capable.  He can say "grab the laptop, let's do this together."

Luther is like this little kid.  On the South Dakota trip, he wants to go four wheeling.  He's really excited about getting strapped in to an ATV that I'll be driving and head in to the woods at 50 miles an hour.   Ummmmmmmmm - no.  No no no.  Is that wrong?  I wouldn't mind if someone else drove him around.  Well - yes, I would mind.  He's like a ragdoll strapped in to this machine that could fling him in to the air at any time.  Even if no flinging is involved, the physical toll it would take on his body will be outrageous.

So here we go again.  Sorry, honey - you just can't have any fun.

I know there's a middle ground.  We can find some other way to get that outdoor, ATV excitement. But I feel like I'm always raining on his parade.

I'm not sure how I got off on this tangent.  Just wanted to check in, say it's been a fairly quiet week and sign off.

Hmmmmmm.  Clearly there are a few things on my mind.

Saturday, August 22, 2015

I hold you tightly within my heart

This is a post from another caregiver I've come to know whose spouse has ALS.  They've had ALS for a year longer than we have.  While our situations aren't exactly the same and I did cut out a few paragraphs that didn't pertain to our lives, he sums up so much of the frustration, guilt, sadness caregivers feel each day.  It's a tough read but an important one.

FYI - as you read this, PALS means Person with ALS.

His perspective:

I have thought for a long time that this must be what a soldier in battle feels like.  The events of each day are completely out of your control.  There is no indicator of what will come next and when. There is unrelenting stress and anxiety in dealing with the responsibility yet you need to remain calm, focused and stay on your toes.

You don't sleep, eat, take a shower or use the bathroom when you want, you do it when you can, if you can.  You are physically and emotionally exhausted all of the time and there is some part of you that is always sore.  And like any soldier will say, you can't explain it unless you've been there.

On top of all this. I don't have my spouse anymore.  I mean, physically I do, but she is now my full time task.  I don't mean this in a burdensome way, but in a matter of fact way.  And it's a real pisser when you realize that the only person who can help you get through it all is the person who now has ALS.

Your role is now caregiver, not spouse.  You are there to serve them.

You also get to simultaneously wonder about your own life and your future.  I left work to stay home full time.  I am on unpaid leave, but how long is anyone's guess.  Is my company going to do this indefinitely?  Not likely.  How long will they go?  I am going to be 53 this week.  What if I am out of the job market for 5 years? Can I get another job?  Will I be able to retire like I planned?  Will I die alone?

Those are all valid concerns but rest assured, you can't mention it to anyone.  Then there's the pall of ALS hanging over every aspect of your life.  Your home, where you once shared so much enjoyment and was your source of "coming together" is now full of medical equipment and seems more like a hospital ward than a home.

Your friends with ALS die and you deal with the specter of death every day.  Every freaking day.

You become someone you never were and never want to be and the only suggestion anyone has is "you need help."  No really, I don't because help is work too and it's up to me to manage all that.  My spouse can't speak.

Can I ever leave her alone with someone?  And when/if you do have help, you're always on the clock. I have X amount of time to X amount of tasks.  It's not downtime or is rarely downtime.  You now have time to get done everything you need to get done.  If your help can't come for some reason, it's you, it's ALWAYS you, who must change or cancel plans for that time to accommodate your PALS.

You get to have all these thoughts knowing that tomorrow you're going to do it all again without resentment or making your PALS feel like a burden or a chore.  You love them and you want them to know you have their back and in this time of their life, you can be counted on to come through ane be everything you can be for them.  Then you'll do it again the next day.
From me:

The quote I added is intended for someone experiencing a loved one's death.  I included it because in many ways, I mourn the life I used to have with Luther.  The life I should've had, the life we planned together.  The weird thing is it's like a little death each day.  It goes on and on.

To lighten the mood a little, I will say it has brought us closer together.  I'm not dragging myself through each day in a state of mourning -- it lurks below the surface, for sure.  You have flashes of sadness.  It gripped me the other day when I was shoveling rock, of all things.  I can't even tell you why it hit me.  I was alone, outside and it felt like someone was squeezing my heart.  I cried for about two minutes and moved on.

I had a conversation with the person who wrote this and he had this "aha" moment... this scary moment of how long will this go on?  How long can he sustain being a full time caregiver?  For them, it's been 3 years.  You get mired in the day to day and suddenly, 3 years later, you look up and think about your future.  How can you look at your spouse and say I'm worried about my future?  They think, hey - at least you have a future.

It's a tough tight wire act.  Balancing between being the world's greatest cheerleader and feeling like you're going to crumble at any moment.  You find that middle ground.  It's a tenuous and frail place to live... within that odd space - like the eye of some sad hurricane - you find this amazing strength.

Ok - I'm taking off my super hero caregiver cape.  Hahaha!  Superhero.  Far from it.  Tired wife cape. Time for bed.  I tend to wait until I know I will fall right asleep.  The worst is lying in the dark letting the demons dance around in your brain.  I think I'm there.  I just tucked Luther in bed, now it's my turn.  Sweet dreams, everyone.

Tuesday, August 18, 2015

This is what scares me....

A post from someone with ALS (from an ALS support group I'm in):

I've been feeling down lately, thinking a lot about the death dignity law we have here in Washington State.  My life is all but over, existing of bed, power chair, lift chair, bed.  Cramps keep me awake most of the night, and I lose strength and abilities every day.  I am tired.  

After a year and a 1/2 of 24/7 care, my wife/caregiver is tired as well and the worst is not here.  ALS is wrecking her health too, anger and stress are at an all time high.  

Would God really send me to hell for making such a choice?  He has already condemned me to death, does he really need to pick the time?  How do you get back your will to live once you have lost it??

From me:

This post came at such a weird time.  Luther fell down last night.  We had to call 911.  It was awful. He went to sit down to use the toilet and he fell to his knees instead.  His legs are very weak but he's been able to walk a short distance.

I realized, for all my angst so far, I've had it easy.  In one day, I realized this is going to be a really really tough ride.

We have a lift, it's called a hoyer lift.  I put a sling around Luther and lift him up with this machine. We haven't had to use it so it's stored away, the battery is dead.  We've been (falsely) comfortable thinking we won't need it for a while.

I could've used it last night.  I couldn't lift him up.  I ran to get the hoyer and it wouldn't work.  I felt awful.  I'm the caregiver, the keeper of Luther's health.  This was a giant failure.  He was in tears... he's never in tears.  He was in so much pain.  I tried 3 times to lift him up.  I kept thinking of those moms who lift cars off their kids.  I could not lift him up.  

I wanted to call 911.  He said no - he was defeated but his pride was stuck right up front... How could I lift him?  He wanted me to do it.  He wanted me to use the lift, to take care of him.  I started crying too.  I had to call 911.  I watched my man, my husband get picked up by two other guys and I know it chipped something away from him... his dignity?  his manhood?  Whatever.  It was sad, it was hard. 

Today, he told me he didn't really want to walk anymore.  How does someone say that?  How awful. He tried a little bit.  He couldn't do it.  So all day today I had to be with him every minute.  He couldn't sit on the toilet.  It was one of those defining moments.  Now what?  

Up until yesterday, he could do some things on his own.  Use the tv remote.  Get up from his chair. Use the bathroom.

Today that changed.  Today seems like a milestone.  The past month has been leading up to this. Once he can no longer walk, life becomes different.  24/7 care.  

I'm hoping the fall just tired him out.  That tomorrow, his legs won't hurt as much and he'll be able to walk again.  I'm not ready for this.  I'm not ready to see my husband in a sling, lifted up by a machine because he can't get out of his chair.

I"m not ready to face the questions the man asked above.  

Thursday, August 13, 2015

Yep - the ice bucket challenge rolls on!!!

This year, the ice bucket challenge is NOT taking the world by storm like it did last year.  That was lightning in a bottle, a once in a lifetime viral moment.

However, August has been designated the month to take the ice bucket challenge until there's actually a cure.  #everyaugustuntilacure

Sooooooooooo - I got the bright idea we'd take the ice bucket challenge every single day this month. Our way of supporting the cause.  Fighting the good fight.

Man, it's tough thinking up new ways to pour a bucket 'o ice over my head!

But we're having fun with it.  We love the idea we're creating even just a sliver of awareness about ALS.  That's our goal with this year's challenge.  If we raise some money, that's even better.  Mostly, though, we want people to know more about ALS because it's such a mysterious, devastating disease.

Without further ado, here are a couple of the videos!





Speaking of donations!!  Here's the link to our ALS Walk.  You can Join our Team or Donate to a Walker.  If you click on Donate, on the next page, you'll click on Find a Team.  Our time is FLYING SQUIRRELS!!

Tuesday, August 11, 2015

Thanskgiving full

I was going to title this "I feel fat and ugly" but that seemed dramatic.  I do.  At this exact moment: 1:46 a.m, I do.

It's Monday night... well, Tuesday now.  Day before therapy day.  I was going to try to write here every Monday to gather my thoughts for therapy but it's hard wrangling those sneaky kitty thoughts... they run everywhere, scattered, hiding.

I've always been a little chubby.  I've been sort of ok with it.  Sadly, I have spent years thinking "if only I lost xx pounds I'd be:  A.  happier   B.  more successful   C.  more outgoing  D.  _____ fill in the blank with some unattainable adjective.

Always chasing a stupid brass ring, some goofy goal when really, I was always already happy, smart, successful.  I was just holding up some fun house mirror so I couldn't see myself that way.

Anyways.  This is about now.  Well - maybe a little about the past.  How you handle problems.  Fill the void. Face realities.

In my past, I built big 'ole walls to keep people away.  I guess I didn't want to be judged.  It was easier to retreat.

I see that pattern happening again. Wanting to pull the covers over my head and pretend I have no problems.  But who doesn't do that? I think it's ok to do a little of that once in a while.  A little R&R.

Now, I have someone who relies on me.  I have to get out of bed.  I don't have the luxury of time to hide away and pick myself apart.

I go to therapy each week.  I write here.  I'm in support groups.  I'm really open with Luther, with my friends and family about how I'm feeling.  You'd think these avenues would purge those clawing kitty thoughts right out of my brain.

Sometimes it helps.  I feel lighter when it isn't stuck inside my gut, my head.  My heart.  But man, it's always there.  The heaviness of our situation.  The weight of dying.  Decline.  Grief.  Sadness.  It's stuck somewhere inside me.

To quell this feeling -- I eat.  I eat until I'm Thanksgiving full.  Luther was diagnosed one year, eight months ago.  He's lost about 40 pounds.  I've gained 20.

I get it.  I know stuff.  If I ate right, I'd feel better.  If I exercised, I'd feel better.  I know this.  More to the point, I know - I KNOW - this is emotional eating.  I have Brad Pitt in my head constantly saying this:

My life right now seems really out of control.  It's being dictated by ALS - a thing I cannot control. I had to quit my job because of it.  Become Luther's caregiver.  Watch my husband decline.  I've lost my sex life, parts of my personal life, my work life, my home, my future with my husband.

It's like this constant, constant grieving process.

On a day to day basis, I don't think like this.  All of this simmers under my lid, so to speak.  94% of the time, I'm grateful to have the opportunity to hang out with Luther, we figure out different ways to be intimate.  I'm glad I got rid of my townhouse, I've found new ways to reach out to friends and family.

But the remaining 6% is there.  Right under the surface.  So I shove food in to my face because I don't want to feel it explode.  I want to be numb.  I've talked about it before:  robot mode.  Don't feel. Don't think.  If I let out the sadness, the anger at how unfair this is, my bitterness at fate, it might never stop.

I want to be Thanksgiving full - it's like that makes me feel satisfied.  Weird, huh?  Because after, I feel gross and ugly.  I think the scales (no pun intended in all this talk about fat) are tipping and the gross/fat part is bugging me more than this need to be in a food coma, which is why I'm writing about it tonight.

I read something interesting:  fat is not a feeling.  Sad is.  Anger is.  Love is.  Fat is a thing, not a feeling.  So stop "feeling" fat.  Feel frustrated by it.  Or accept it.  Whatever... just stop feeling FAT and understand the true feeling and why.

I was supposed to call the Emily Project, per my therapist.  I did not do this.  Instead, I bought a box of Lucky Charms.  I'll end up calling them tomorrow morning so I can tell the therapist I did it.  The Emily Project is an eating disorder clinic.  It feels crazy to say I have an eating disorder.  But you know what?  This is a crazy time.  My reactions feel crazy.  Maybe it's a good idea to ask for help.

I should get to bed.  My skinny skinny husband is sleeping.  I'm tired but I can't sleep.

Deep thought of the day:

Friday, August 7, 2015

August is Ice Bucket challenge month.

Click the link above to see day 6 of our ice bucket challenge!!

We are in day 7 of our ice bucket challenge.  We're taking the challenge every single day this month and challenging our friends!  August is now "every August until a cure" month in the ALS world.

So really, what's the deal?  Are we asking you to pour a bucket of ice water over your head?  In a word, yes.

Why?  It's not about the shock value of it, although that's fun!!  Before Luther got ALS, I didn't know much about it.  When I tell people he has it, I get a blank stare.  So then I say he has Lou Gehrig's disease.  Sometimes people know that name.  Then I say, you know, the disease that got everyone to pour a bucket of ice over their heads.  Ohhh!  Sure!  But I don't think many really know what ALS is all about.  Why would you?  There isn't a ton of media (until last year).  Not a lot of people get it.
Sure, the ice bucket challenge is about raising money.  But if you don't donate, that's ok.  We all have charities close to our heart.  We have immediate financial needs.  We can't donate to every cause that comes across our Facebook pages.

This comes down to awareness and support. When you take the challenge and then challenge three more friends, you're creating awareness about ALS. That's become important to us.
The more people who know there is no treatment or drug to slow the disease (ok, there's one drug with awful side effects that has shown to slow ALS by three months) as well as no remission, no cure, the more understanding about ALS, the better.
You don't have to pour ice water over your head but it is fun to see! smile emoticon You don't have to donate anything. In the days, weeks, months to come, as Ed's health and mobility decline and our life changes, what's become most important to us is your support.
Knowing that you rallied during this month, seeing your posts and videos does more than you know for Ed's spirit. Mine too. ‪#‎everyaugustuntilacure‬

Wednesday, August 5, 2015

We think we have time...

Click the link above and take a few minutes to watch this ESPN story about Pete Frates, the guy who started the Ice Bucket challenge last year.

He was diagnosed at age 27 in 2012.  Watching this video is tough, yet inspiring.

As I watch his progression, I see Ed's progression.  There's a scene where Pete's home health care worker is getting him out of bed - this is exactly how I get Ed out of bed.  Brushing his teeth, his father brushing his hair... these small daily moments that become intimate yet routine.  Today, 3 years later, Pete can't move and is on a vent 24 hours.

In the beginning, his dad quit his job to become Pete's full-time caregiver.  He says doing this has given them the opportunity to say the things that take a life time to say - the important things we should be saying to those we love but overlook.  We think we have so much time.  I know we don't. Every day is a gift.

Tuesday, July 28, 2015

Lazy summer days

Things are good.  Luther's felt better.  No hospital visits, so that's a plus!!

I'm feeling pretty blessed.  Top of the rollercoaster, I guess.  You know what would be great?  A flat rollercoaster.  I suppose that's called a train?

Plateaus are good.  Great!  We talk a lot ("we" meaning us folks in the ALS world) about plateaus.  I think I've mentioned this in other posts.

Something rotten will happen.  We are shocked, sad, depressed.  Then we get used to the change and everything's ok for a time.  Then another change occurs and it's another adjustment.

You know the five steps of grief?
1.  Denial
2.  Anger
3.  Bargaining
4.  Depression
5.  Acceptance

It's like we live this over and over and over.  It's the weirdest way to live.  We never get a chance to just breath.  Ok, that's dramatic.  We do just live our lives day to day.  We aren't moping around ALL the time.  It's more like there's this weight in your heart or a little gray cloud that just hangs around you.

Anyways - I didn't mean to get in to another philosophical paragraph about living your best life and all that.  Instead, I just wanted to report that - after a month of some really sh*tty stuff - it's been a good couple of weeks.  Well - maybe a good week and a half!!

My heart busts sometimes with how much I love Luther.  I never ever thought I'd love someone so much.  It's so funny, too... when we first met I just wasn't so sure.  Now, I feel really lucky to have him in my life.

I was thinking about documenting more of our life together.  More pictures.  More blog posts.  I bought a scrapbook in which to put our memories.  I can't remember what I did three days ago -- you know how that goes??  You look back and think - where did the time go?  I mean for heaven's sake, it's going to be August!  Where'd the summer go?!

I don't want to forget.  In a year from now, five, ten years... I want to remember everything.

Just Breathe - Pearl Jam:

Yes, I understand that every life must end
As we sit alone, I know someday we must go
I'm a lucky man, to count on both hands the ones I love
Some folks just have one, others, they've got none

Stay with me / Let's just breathe

Monday, July 20, 2015

Knowing too much

When does a support group stop being supportive?  Not in the way that members aren't thoughtful, helpful and caring.  It's more in the way I process the information that's being shared.

Whether it's an online support group or in-person, the emotional toll of being in a room (virtual or face to face) filled with so much loss, heartache, anger, frustration -- and even on the flip side - so much love - is sometimes just too much for my brain and my heart to take.  

Don't get me wrong. I will always, ALWAYS suggest finding a support group as a way to cope with whatever issues any of us face.  Overall, the benefit I get from being with a bunch of folks who understand what I'm dealing with is super positive.  

I also have moments of realizing how incredibly lucky I am.  People share such devastating stories about families who are far away or worse, close by and won't help.  Caregivers with young kids.  Or angry spouses.  Or an older parent who refuses help.  The list goes on.  I think, man!  I have an awesome family.  My friends are incredible.  My husband deals with his illness with so much grace and patience and continues to shower me with love and kindness.  

These are the things I hold on to when I face our future.  Support groups are like a crystal ball.  You get to look in to your future.  With ALS, the future doesn't offer hope, a treatment, a cure.  It's the slow wasting away of someone you love. 

Every day, in the ALS support groups, someone dies.  Every day, someone new joins the group and is facing the raw heartache of their future.  Every day, someone posts about the pain and frustration and the guilt of being a caregiver.  Of what it is to want to run away, to have a moment of what we used to have, to have a moment of being free from ALS and then you realize, soon enough, you will be free because your partner is dead.  

Every day someone posts about poop.  I kid you not. 

To listen to stories of what's to come is devastating.  On the one hand, it clears my head and let's me get ready for the worst.  I'm not sure, though, that I can take hearing what the end looks like.  Sure, maybe it won't be exactly what we go through.  But still... ALS ends up in the same place no matter how you get there. 

OMG!  I have to (sadly) laugh... everything I'm writing today is like a see-saw!  I hate this / But I'll be ok!  I feel bad / But I'll say this to feel better!   This is so devastating / this is so eye-opening!

Can you tell the emotional belly flops I feel every day?  I get up, muster up whatever it is (I was going to type the cliched "courage" but that's not it.  it's whatever just gets you up and out of bed), I climb up the diving board ready to face the day and sort of belly flop on the way down!  Back up the board, dive back down.   

I had this super "AHA" moment yesterday.  I realized that I do the very thing I don't always like:  I try to fix things.  I guess it's human nature.  You just want to hug everyone, wave the magic wand and make everything all right. 

In a caregiver support group I attended, a man needed a walker.  We have one we don't use and I got all jazzed and said you can have ours, I'll bring it next week, it's hardly used, I'm so excited I can fix your problem!  The group leader saw I was taking over this man's moment of sharing his experience and steered the conversation back on track.  

In that very moment, I totally realized I made this about me - look at me! Granted, I thought I was doing a nice thing and yet, I made it about me fixing his problem.  I put the spotlight on me when this was about him.  It was his time to share, his time to let us in to his experience.  

This is another flip-floppy thing.  In wanting to make someone feel better, in wanting to fix things - which is a great thing, right? - you are making this about YOU...   Which isn't so great, right?  I guess it's is in the timing.  Rather than truly listening to what the man above was saying about his frustration over his wife losing her mobility, over the process of dealing with insurance, his grief over the loss of their life together, I was busy formulating a way I could fix what I thought was the problem.  I stopped listening.

When is something truly fixable?  When is it right to offer suggestions or help and when is it right to just offer your ears?  A hug.  The proverbial shoulder to lean on.  Most times, I'm thinking it's best just to listen, say I love you and I'm here for you.  It's a tough call.  

I never know how to end these ramblings.  I see how many people read each post.  (Kind of spooky in a Big Brother way)  Some days it's 25.  Some days 155.  When I type, it's not with a reader in mind until I get to this part, the end part.  It's like I want to say "and thanks for stopping by."  Other times I feel like I need to end it in an upbeat, profound way so you, dear reader, don't think you have to fix anything.  (I say this somewhat tongue in cheek.  Feel free to bring over brownies or offer to hang out with Luther anytime)

It's now 8 a.m.  Up since 5:30.  Got to sleep around 2.  Time to corral all these thoughts and set them aside and go give Luther a giant hug and another cup of coffee.

Hope we all have a good day.