Friday, September 22, 2017

My heart! Ed died - 9/20/17

Ed died.  He died peacefully, I think, on Wednesday, Sept 20, 2017 at 9:45 p.m.

I wish I could convey how amazing Ed is. I didn't have enough time to know him.  We were together five and a half years.  He was sick for almost 4 years.

Ed crashed in to my life quickly.  How lucky I am he did.  I am so grateful for his love.  My only regret is I didn't know him sooner.

My heart hurts, my body aches to hold his hand one more time.  My brain won't shut off.  
In many ways, I think we were fortunate we had this four years to say goodbye.  It was a really, really tough place to be.Stuck 
in limbo.  Watching him fade away. Walking a line between loving wife and controlling caregiver.   Mostly, though, we got to be together, we lived a few bucket list dreams.  I quit my job 3 years ago and we spent every day together since.

The thought of re-entering the world again is daunting.  Ed was my champion, my best friend, my partner in crime.  He was a loving, supportive husband.  We were a really good team.  I miss him so much.

I know people face death every day.  Ed's son, Ryan, died unexpectedly almost 5 years ago. No time to say goodbye.  No time to wrap his head around his death.

We've had that time.  We traveled, spent time with both our families, reconnected with friends, relatives.  We created really good memories.  

We spent the last year in a nursing home.  In an odd way, it was a safe haven from the world outside. Many times, we both missed having him home.  There were times Ed would wake up alone, in the dark.  Scared.  Unsure where he was.  It broke my heart I wasn't there to reach out and comfort him. We learned to leave on a very bright nightlight.  Sometimes he would call me. Toward the end, he forgot how to make a call.  

Ed is amazing.  So strong.  This last year was tough.  He was a proud man, so smart, so generous and kind.  

I can't write anymore now.  

I love Ed so much and as much as my heart hurts, my heart is filled with love.  Ed gave me that gift.


Friday, September 8, 2017

Ed update - 9/8/17

Ed is having a tough time.  Another whopper of a UTI, this one making him think he's Engelbert Humperdink and his feet are on backwards.  It's day three of anti-biotics.  Fingers crossed they kick in soon.  The pain of having to tell him several times a day he cannot get out of bed, put on his fish shoes and walk to Florida is just too much.

Along with this UTI, is the possibility that ALS has progressed.  ALS seems to have these moments of steep decline and then months of plateau.  I'm sure ALS is in him, chipping away at his body and his brain but it goes unnoticed until BAM!  Something happens that feels so shocking.  Two months ago it was the fact he wasn't going to get out of bed anymore because losing his core muscles put too much pain/pressure on his diaphragm.

<----- Happier days at Disney - 3 years ago

It's hard to tell if what he's feeling is ALS progression because of the UTI.  But the last 10 days have been rough.  Panic attacks, agitation, he can't get comfortable. My happy go lucky husband is, as he said "more sickly" than he's ever felt.  He says it's not a breathing issue.  My guess is he can't say the truth of what it is.  Especially to me.

If it's a breathing issue, it's too scary.  So he won't say it.  He's opted for no intervention.  Non-invasive intervention would be a bi-pap.  Invasive would be a tracheostomy/vent.  He's decided he wants neither.  I can't imagine not choosing something like the bi-pap to get air in to your lungs.  But he says no.  So it's been a week of more panic attacks, lots of distress, more drugs.  He cannot get comfortable unless he's asleep.  Even with more drugs, he is agitated.  That could be the UTI -- his perception of his body in relation to his space is way off.

It was a year ago we were here, thinking he had days to live.  We went from being at home, to VA palliative care to here, at the nursing home.  We got through that.

This feels a bit different.  A year of ALS chipping away.  The panic attacks, the distress, weak voice, jumbled words.

Last weekend, he said he can't live like this.  It's the only time he's ever, ever said it. I haven't brought it up again but the statement is out there, looming over us.  It was an awful night. Knowing I had to say it's ok to feel that way when really I just wanted to scream at him to never ever leave me.  But I just whispered it's ok, it's ok to say it, I'll be ok, you'll always be with me.

He's asleep right now.  He got morphine two hours ago because he couldn't talk and breathe at the same time.  He'd been awake for a while with doctors prodding at him, aides cleaning him up, the pastor stopped by on her regular visit.  It was too much.

It doesn't feel like this is ok.

Friday, September 1, 2017


Grow strong in your weakness.

I can't even imagine being weak in our situation -- Ed is the strongest man I know.  His will to live, his positive attitude, his character - they all add up to this disciplined, strong man I fell in love with.  In my eyes, his strength has grown so much.

I've found my own wells of strength.  A side of me I didn't know I had.  Ed's advocate, protector, finding the balance between wife and caregiver.

That being said, these proverbs really hit home.

You hear the phrase "let it go" all the time.  Just let it go.  How do you do that?  How do you let go of feelings that hit you so strong?  I feel so many insanely powerful feelings about Ed, about ALS, about my role as a caregiver.  How do I just let go of those??

The other cliche that gets to me is "God will never give you anything more than you can handle."   This is totally untrue.  UNTRUE!!!   This slow death of Ed, watching from the sidelines as he deteriorates.  It IS more than I can handle.  The thing is, because it's more than I can handle, I turn to God to help.  It's brought me peace to admit I can't handle this and ask for help.

The idea I can grow strong in weakness feels itchy!  Uncomfortable.  I am woman, hear me roar!  I can handle this!

Most of the time, I can.  In those moment I cannot, I realize it's ok to be weak.  To ask God, my family, my friends for help.  To let down the wall of "nothing can hurt me" and allow more love and support in my life - that's a really good thing.


Donate here to our ALS Walk!  All of the money goes to the ALS Guardian Angels - a non-profit run by one guy who takes no salary.  The money then goes to people affected by ALS to help with bills, equipment, support.  So much of the money raised (think Ice Bucket challenge!) goes to research or education.  Which is awesome!  Ed and I feel strongly people need immediate help due to the financial burden ALS puts on families.  Click the link and help, if you can.  Thanks!

Friday, August 18, 2017

Live like Ed for just 10 minutes

I challenge each of you to live like Ed for only 10 minutes: Lay on your back, flat. Tilt your head to the right. You cannot move it to the left. As a matter of fact, you cannot move at all, other than some toe wiggling. Be sure your arms are flat to your sides.

No scratching. No moving. Keep your head tilted to the right, so if someone comes to your left side, you cannot see them. Need a drink of water? The tv channel changed? Need to pee? Do your lips feel dry? Is there something in your eye? Is anyone near you to ask for help? Need to eat? Oh - wait, you don't eat anymore. You're fed through a tube in your stomach.

Many people - including Ed at one time - would say they would NEVER live like this. They'd rather die. They think this life is worse than death. And yet, here we are. Ed lives like this 24 hours a day. The will to live is strong. We are together, he loves his friends and family, he is not ready to die.

This year, I am NOT walking to find a cure. Instead, I am walking for the ALS Guardian Angels - a small non-profit run by one man who is committed to bringing financial relief to people whose lives have been devastated by this awful disease. The relief comes in the form of grants to help with bills, medical equipment, advocacy. The money goes directly to people in need. There is NO overhead, the man who runs the charity does not get paid.

Whether you can donate $10 or $100 - know that every dollar you donate will directly help someone who is in desperate need to keep a roof over their head, to purchase a wheelchair, to find a way to communicate.

I am hoping to make it to California to join the walk and represent Team Flying Squirrels. All of the money raised will go to the Guardian Angels. I'll be paying my own way to Cali!

Here is the link to Team Flying Squirrels:

You can also buy a t-shirt and make a donation at this link:

Thursday, July 20, 2017

Ed update

I've turned off the feeling part of my brain lately, so it's difficult to write about what's going on.  It's exhausting to think about, analyze, process grief, be sad all the time.

I guess it doesn't go away because I flipped my emotion switch off.  It's simmering around somewhere.

Ed is so tired all the time.  Maybe it's his tiredness that makes me realize I can't be tired and sad all the time, too.  My job, my goal is to make his really small world a comfortable, safe place.  Not necessarily happy.  Sure, I want him to be happy.  But I think peaceful is a better word.  Content with what we have.  Staying grateful and positive.  It's a challenge.

ALS is a disease of change and loss.  It's constant.  We pretend we have some respite from it, but it's always there.  He lost his arms and hands.  Then his legs. Lost his job.  Mobility. Intimacy.  He can't eat anymore.  His dignity has been chipped away.  The amazing thing about Ed is he goes with it.  He is such a quiet force.  His strength is incredible.  I rail against the world, take my frustration out on food.  He's still my rock through all of this.  I can only hope I give him some sense of stability.  I hope I make him feel valued and so very loved.  

At this stage, 3 1/2 years from diagnoses, we wonder what's left to lose?  His voice.  His lung capacity.  His life.  That's what we silently wait for.  This insane limbo, waiting for the proverbial shoe to drop.

We don't talk about much about it.  Or really, even consciously think about it.  I admit I'm always looking for the signs.  How's his breathing?  His voice gets so weak, he can't talk. Every time he coughs, I wonder if this time, it will lead to choking.  

Over the last several weeks, he hasn't been out of bed much.  Says he's too tired.  It's too hot.  I encourage him to get out of bed.  It seems like the right thing to do.  

I never thought about losing the ability to get out of bed and sit up in his wheelchair.   We talked about it yesterday and again today.  He just doesn't want to get up.  It hurts his diaphragm.  He feels all scrunched up.  

So now that's the latest loss.  He said he does not want to get out of  bed anymore.  I asked him how he felt about this change.  He just looked at me and smiled.  What can I do, he asked.   It's ok, he said. It feels better to be in bed.  He's comfortable.  And that's the thing.  That's what life is about right now.  Comfort.  Making his life easier. Safe.  Peaceful.


Monday, June 12, 2017

Same as it ever was

It's 1:30 a.m. - Monday.  June 13.  I can't sleep. I'm sitting in the spot Ed used to sit and sleep when he was home.  I miss him so much.  I miss our life, having him with me.  I hate this - being here by myself.

The first picture was taken two years ago - we were on our way to Key West.  We've made some amazing memories.  The second picture is from last month.  At the nursing home.  Where he is now.  By himself.

I cannot, cannot imagine his life.  He has days now where he doesn't get out of bed.  He lays in the same position for days.  Sure, he's repositioned but he doesn't get up.  Day after day. Much of the time by himself.

I let these thoughts eat at me when I can't sleep. Should he be here, at home?  Did I try hard enough to keep him here?

We talk about it often.  We talk about it objectively - how much it would cost to have 'round the clock care.  What if someone didn't show up?  What it was like when he was home and bedbound.  We talk about it emotionally - now much we miss each other.  How great it would be to be home.  But then we remember how miserable it was when neither of us got any sleep, when he was coughing and choking non-stop.  Every conversation leads us to the same place:  he's where he needs to be.

I miss Ed so much.  I grieve the life we won't have.  His arms around me.  Times like this, late at night, unable to reach out and feel safe next to him.   Lately, I rerun our relationship over and over. The things we could have done, where I could've been a better partner.  It's a maddening thing to do.

Ed just came out of another urinary tract infection.  He was confused again.  Unsure where he was.  It lasted several weeks - maybe a month?  Those times are so hard.  He thought he was in Louisiana.  In a garage.  At a cabin.  In the hallway.  He just cleared up a few days ago.  It's good to have him back.

His goal this summer is to go fishing.  He's obsessed with it.  Or was.  We went to Cabela's a few weeks ago.  It was really rough.  We knew what fishing rod we wanted and found it.  He wanted me to put it in his hands.  He honestly thought he might be able to hold it.   He thought, he actually thought if he wished it hard enough, it might happen.  I did NOT want to put that pole in his hands but I did and it fell straight out of his hands, on to the floor.  He was crushed.

Since then, he hasn't talked much about fishing.  He was in the second week of his UTI at that point. The delusions were just so starting but we didn't know he had the UTI yet.  Maybe that added to this moment??

He's very very tired now.  The weather hasn't cooperated.  Neither did his hands, if you ask him.  I swear I'm going to get him out fishing - it has to happen.

I think I'm just rambling.  Time to try to sleep.  Hopefully, no dreams.  I don't write as much anymore because we're stuck in this limbo.  Content in many ways that Ed is still here, still with me.  But sad, empty, stuck in this same day.

I love Ed so much.  So very much.

Monday, May 1, 2017

The long drive home

Each night I leave Ed, my heart stops just a little. By the time I leave, he's getting sleepy from drugs and ready to drift away.   That makes it easier.

The reality is every one of us could go to sleep tonight and not wake up, right?  I think this every night I leave Ed.  Even though he's doing pretty good, I think this.  Could tonight be the night?

So I tell him I love him very much. It hurts to leave him.  To leave him alone in the dark.  To not be there when he needs help.  If he dies when I'm not there, I want those to be the last words he's heard. That I love him so very much.

When I leave, I try not to cry. He's all sleepy and smiling at me and he tells me he loves me too. Will those be the last words I hear??

The drive home is hard.  Sometimes I practice his eulogy.  This sounds weird and morbid.  But it's helped me keep Ed solid in my head.  Does that make sense?  Reviewing healthy Ed.  His accomplishments.  I say these things out loud as I drive home.  The things he loved.  Loves.

Doing this makes me cry.  I've had to pull over because I couldn't see through the tears. Oddly, it helped.  It cleared my head.  Stitched up my heart a little so I could climb in to bed by myself.  I don't want to say it helped block out the image of Ed alone in his room but it soothed my heartache a bit. Keeping Ed close by talking about him as I drive home.

I can't believe it's been two months since I've posted anything here.  Almost all of February and March, Ed was back to hallucinating insane things.  He took trips to Vegas, Tallahassee, unnamed forests and lakes.  He auditioned for a movie.  He went hunting and on secret missions.  He was in a sinking boat one minute and in a fire the next.  It was crazy and exhausting.

A part of me felt this moral dilemma.  Even though it felt like a Twilight Zone episode, Ed was generally in a happy place, having great adventures.  I wondered if it was worth fighting for finding the cause of his delusions.  Did he want to come back and face his reality?  Ed gave me the answer. Every so often, he'd have a couple of hours of clarity.  He knew something was off.  He'd ask me where he was, how he got in his room.  We'd talk for a while and for a few hours, he'd be totally present.  He said he was tired of feeling crazy and wanted to get clear.  At that moment, we called his hospice nurse and Ed told him he wanted to find some way to make that happen.

Ed update:

He's no longer hallucinating.  He asked to stop his pain medication and was weaned off of methadone.  A day or two after the methadone was completely done, his hallucinations stopped.

His vitals are good.  This means his breathing and lung capacity are good.  His "input" and "output" are good :) :)  Which is code for he's eating a lot and ummm... getting rid of it normally.

He eats about 2500 calories a day.  For someone who doesn't move, this is a lot of food. He's gained close to 20 lbs since he arrived at the nursing home in December.  He was down to 160 and is now almost at 180.  This is a really good thing.  He is totally tube fed.  Once in a while, he has quite a craving. He tried one cheese nip of all things but choked on it.  He can eat jello and sometimes the innards of something like pumpkin or coconut cream pie.  He highly recommends Patti LaBelle sweet potato pies from WalMart.

When he was at home, he was choking and coughing on the junk in his throat.  Gunky saliva accumulating that he couldn't swallow.  This happened every day.  It was scary.  Now, this happens maybe once a week.  It's been amazing this cleared up as much as it did.

His voice is getting weaker.  We are figuring out ways to communicate once he loses his voice.  We both say how lucky we feel he's been able to talk all this time.

I feel lucky he's still here.  We were just talking today how he doesn't remember August through December.  He feels sad I have to remember.  I told him every time I feel guilty he's in a nursing home and not home with me, I remember what those months were like.  Now, he's cared for in a way I could not.  I have time to be his wife.

It's 1 a.m.  I'm in bed by myself typing this.  It's hard to fall asleep.  I don't like the quiet; it leaves too much space for my brain to think.  I miss Ed so much when we're not together. But you know what? A month ago, I missed Ed when I WAS with him.  I'll hold on to that the next time I drive home and feel that hole in my heart.  I have Ed back.

This was about a month ago for Ed's birthday.  I made him a memory box of his Air Force medals.

It's good to see him up and (sort of) smiling!