Thursday night - 11:30 pm

It's been 7 weeks since Ed died.  It is so crazy that he's not here anymore.  What a weird, surreal feeling.  I just don't know how to be.  What to do.  My future without him.

I've actually had days where I don't break down every hour.  That feels good.  I talk to Ed a lot.  It's funny, in a way, I look up to the sky - as if he's up in the clouds.  I've asked a couple people what they think happens when someone dies.  It's interesting how many different points of view are out there.  Is he with God?  Does nothing happen?  Someone told me it's too soon for his spirit to have "crossed over" - as if he's in some waiting room, hoping he's on time for his next appointment.

I like to think he's in heaven.  Someone said he's in his version of paradise.  It's so wonderful there, if he were given the chance to come back here, he would not.  That made me happy and sad at the same time.  Haha!  I'd like to think he'd leave paradise to come back and hang out with me a few more days.

I see-saw between memories of Ed.  We didn't really fight, mostly because Ed just rolled with the flow.  I'd try!  He'd just sit back and let me get a little wound up until I returned back to earth.  Then we'd just talk.

The see-saw is more about what could I have done different?  Better?  More?  Smooched him more.  Told him I loved him more.  Remembering the time I got too hyper to go to the State Fair or couldn't go to a party because I was working.  Did he die knowing I loved him so very much?  I guess that's selfish.  Did he die peacefully?  In no pain?  That's the question.

Then I realize it is what it is.  I can't change anything.  So then I start remembering the amazing times.  Our wedding day.  The day we met.  And the day after we met.  :)    The day he moved in.  The day he was diagnosed and how we held each other all night.  I remember the scary stuff we made it through.  The really rough patches we stepped up and faced together.  Our amazing travels and adventures. 

It's now 1:30 a.m.  I wander through the house, tired but not tired.  Thinking way too much.  Sometimes I promise Ed that I'm going to get myself together.   7 weeks since he died.  Is there some timeframe in which emotions subside?  Fade away?  If the emotions fade, do the memories fade, too??

I want to remember everything.  I want to remember his voice.  How his hand felt in mine.  The good times and the not so good.  Everything.  I so wish I'd taken a million more pictures.  Written more about our day to day.  More about Ed.  So I could go back and remember the goofy little things.

It's time for bed.  Hopefully sleep.  I push Ed out of my brain at this time of night or it keeps me awake.  My heart is full of love.  Some part of me is super sad.  I'm scared, grateful, anxious, tired.  The see-saw.

Sweet dreams.

I miss Ed so very, very much

It's odd to be here without Ed.  I love him so much.  How does this ever happen?  Go away? 

I try so hard not to be selfish.  Ed's in a better place.  Free from ALS.   Now that I have this distance from the life we had this past year, tucked away in that little room in the nursing home, I'm realizing how difficult it must've been for Ed.   How strong Ed was for never giving up.  Never complaining. 

At the time, I knew it was tough.  I think, though, I was too close to the day to day challenges to really see what Ed endured.  Laying there, motionless, day after day.  Waking up in the middle of the night, alone, scared.  Bored out of his mind.  Never hugged, we didn't sleep next to each other, other than range of motion and physical therapy, rarely touched. 

When I was there, I would kiss him, run my hands through his hair, hold his hands, rub his legs and his feet.  It's those little moments, though... the things we take for granted, that he didn't get.  Stuck in that bed, he couldn't even see who came in to the room because he couldn't move his head. 

Many times, he asked me to stop "messing with him."  I think he felt like a bug under a microscope.  I was always looking for some new change, was he ok, what could I do for him?  He just wanted to be my husband.  Not the dying husband. 

I replay everything over and over.  What could I have done different?  More?  In those last days, was he scared?  Did he know how much I love him? 

I know, I know this is bad to do.  What's done is done.  I can't change anything.  And, I think, in my heart, I do know I was a good wife.  A good caregiver. 

Life is so different.  I can't believe this week is already a month since he died.  It feels like it just happened.  But it also feels like a year ago.  The need I have to touch him again.  To kiss him.  Hear his voice, his laugh. 

Death happens every day.  I know I'm not special with these feelings. It doesn't minimize my grief and it shouldn't.  But it gives me perspective.  As much as I want the world to stop and let me grieve, let me figure things out, life keeps moving forward. 

One hour, one day at a time.  One foot in front of the other.  Sometimes I have to sit, have a little chat with Ed - I wonder how he's doing, where he is.  But then I get up and move along.

Some nights, my heart squeezes so hard.  It hurts.  It takes my breathe away how scared, how lonely I feel without Ed.  We only had 5 years together.  How do people feel after being married 30, 40 years? 

I have this picture of Ed, up in heaven.  He and his son, Ryan are walking together.  Talking about everything and nothing.  It's a bright, sunny day.  I imagine him looking in to a window where he can see me, see his son Luther, his grandkids.  He's smiling because he knows we'll be ok.

I try so hard to hold on to Ed.  To his love.  Keeping me afloat.  If I get too sad, I let myself cry a little and then remember how lucky I was to have him at all.  I remember he doesn't have ALS anymore. 

I just miss him so much.

3 weeks

I want to share Ed's eulogy.  I worked on it for a year.  Last October, we thought he had days to live.  I started thinking about what I'd say about him - what I wanted people to know about Ed at that time.  Pretty much every night for this past year, as I drove home from the nursing home, I said this aloud.  I don't know why it gave me comfort to do it.   I guess it made me feel like I was honoring him, made me feel closer to him on that drive home?

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I want to thank everyone for coming, it means a lot to me.  I know it means a lot to Ed – wherever he is – I imagine he’s fishing.  Hanging out with his parents, his Uncle Wendell and his son Ryan.  It gave Ed a lot of comfort to know he’d be reunited with his family.  It gives me comfort to know he’s free from ALS.

I’d like to take a moment to thank my family for their unconditional love and support over the last almost 4 years.   A big thank you to my mom and dad.  They’ve been so gracious and generous from day one when a southern stranger blew in to town and moved in with their daughter

I want to thank my friends who have been so kind and understanding, who accepted Ed openly.  I have an amazing support system.  You’ll hear me say this a lot – I am so blessed. 

I also want to thank my new family from down south who have accepted me warmly in to the Cutchins clan.  His sisters, Kay and Linda couldn’t be here today but I know they are thinking of us and I am holding them close in my heart.  Ed’s brother TJ and his son Luther are here with us and I’m so glad you are.  I love you all so much.

I just want to take a few minutes to share the Ed I know with you.  Ed was a pretty quiet guy.  But underneath lurked a generous and gentle heart, a wicked sense of humor once you got to know him, a loving husband and a super smart and accomplished man.

When I first met Ed, he would tell me every single day he was having a fantastic day.  I wish I could say that in the right southern accent.  At first, I couldn’t believe anyone was that happy.  But Ed really was. 

Ed’s glass wasn’t just half full, his glass overflowed. He was so happy to share what he had with the people he loved.  They say opposites attract and in our case that was really true.  I tend to be a glass half empty girl.  Together, we were a really, really good team.  I’m really really going to miss him.

Every time my ever optimistic husband got his head stuck in the clouds, I’d bring him back to earth and together we’d face the day.   And every time I got sad and stuck, he’d tell me he loved me and it would be ok.  In some magical, Ed-like fashion, everything – except this ALS monster – would turn out all right.

ALS is a wicked disease.  None of us could do anything but stand at the sideline and watch as ALS robbed Ed of so much.   Never once though, not once did ALS take away Ed’s faith or his positive attitude.  He was amazing through all of this.  Never once, even in the darkest days and  and the most uncomfortable, scary nights, did he complain or feel sorry for himself.  

I learned so much from Ed through all of this.  Through his example, I learned there is strength in being quiet and gentle. 

He taught me to choose my words carefully – as much as words can make you feel loved or lift you up, they can hurt and once you say something out loud, you cannot take it back. 

He showed me how to be more grateful for the things I do have in my life rather than wishing for something different

I learned how powerful having a positive attitude really is.  This time with Ed taught me it’s about perspective.  That darn glass looks exactly the same.   It’s how I choose to see it.  Half full always feels better than empty.

Ed opened up my world to seeing things in a new way.  He opened up my heart to accepting more love and support.  The greatest gift Ed gave me was his unconditional love.  That’s the love from someone who chooses to be with you and never asks you to change.

Together, we learned a lot.  Every cliché in the book comes true during something like this. 

We realized quickly life is so short.  Ed helped me to stop worrying about things out of our control. 

Ed and I had 5 short years together, almost 4 of those years filled with ALS.  We decided we had no time to sweat the small stuff! 

Tell the people you love just how much you love them.  Every day.  It’s something we took for granted until we realized our time was limited.  What I wouldn’t give to have one more day to tell Ed how much he means to me. 

We learned to find a little happy in every day.  And, if it was just too hard to find happy, we worked to find a place of peace and to find that peace in faith and love.

We learned to be present in the moment.  I didn’t really understand this before.  We’d turn off the tv or computer,  put down the phone, sometimes we didn’t talk.  I’d hold his hand.  It felt so nice to be connected.

The best lesson we learned is – even during the most complicated, chaotic, uncertain times – we learned that life is pretty simple when it is filled with love, family, friends, faith.

I carry these lessons in my heart, just as I carry Ed’s love.

As we go through the day today, as sad as it feels, I want us all to remember how privileged we were to have Ed in our lives, how grateful we are for having love in our lives.  I want us all to find a little happy or atleast a place of peace.   I want us all to remember that indeed, today is a fantastic day.

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 So.  It's been 3 weeks since Ed died.  3 weeks today.  It's 11:30 pm - I think we - me, Jenn, mom and dad - were all sitting in the nursing home, waiting for the funeral home to get there and take Ed away.

It was a peaceful time.  He died around 9:45, maybe a little earlier.  I replay that day over and over in my head.  Actually, the last couple of days before he died.

It was so weird - the last couple days, he had trouble talking.  He'd croak out a few words, water, I love you, tired.  I could tell he was trying to talk at times, but couldn't get out the words.

But Wednesday, when the hospice nurse came in and asked how he was doing, Ed looked up at him and said, clear as a bell, "I've think I've run out of gas."   The nurse and I looked at each other, shocked.  We had a little cry but tried to stay positive for Ed.

He wasn't awake much the rest of the day.  Maybe an hour or two.  I held his hand, told him I loved him.  Told him it was ok to go.  I'd be ok, he did such a good job of taking care of me.  Now it was his turn to be taken care of. 

I carry so much guilt.  So much uncertainty.  Did I do enough?  I know.  I know I did.  I can't help but ask the questions, late at night or in the quiet moments.  I realize this is the natural course of grieving. 

I talk to Ed all the time.  Driving.  When I'm out walking Mia.  Did he feel loved?  Was he scared those last days?  Is he ok now?   Does he know how much I miss him?  How much I loved him?  Still love him?

The thing with Ed, the thing that made me fall so much in love with Ed is his big love for me.  He made me feel safe.  I'd been single for a long time before meeting Ed and the one thing he gave me that I never really felt before was this feeling of security.

Before Ed, I always equated love with that butterfly, rollercoaster feeling.   Now, I realize love is feeling protected, feeling like a team, feeling secure.  Ed gave that to me.  Even when he was so sick, this last year, it was the two of us in that little room, in the nursing home, us against the world.

Now, I feel -- a little scared.  Scared because I lost my best cheerleader.  My best friend.  I haven't had Ed's arms around me in 3 years.  I used to get a little awkward about hugs.  Now, I love getting hugs.  I lost our physical relationship 3 years ago.  It's more than that -- it's having him near.  Having that love.  His love.

I know.  I know there are so many things that soothe my heart when I feel this sad.  He's free of ALS.  We had more time than a lot of folks do with ALS.  He could talk right up to the end.  We had so many amazing adventures.  I got that big love.

Ed just ran out of gas.  It was his time.

I just miss him so very, very much.

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.

  

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.

Faith

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!

https://www.crowdrise.com/flying-squirrels-for-ed

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:

https://www.crowdrise.com/flying-squirrels-for-ed

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

https://www.customink.com/fundraising/alsguardianangels?pc=TXN-167780&utm_campaign=fr_org_live&utm_source=fr_organizer_txn&utm_medium=email&utm_content=campaign&side=front&type=2&zoom=false

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.

  

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.

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!

Sunday night - March 12

Tonight, Ed woke up from a nap. He saw me and started crying. A true, heartfelt cry. I went to him and asked what was wrong.

He said he wakes up sometimes and can't find me. He gets so scared when he can't find me and realizes he's alone and doesn't know where he is.

I try so hard not to cry in front of him. How can my heart take this?

He said he is scared of his confusion. I told him he can call me anytime and he said he doesn't remember how to use the phone. I held his hand. I kissed him. I told him everyone at the nursing home is there to keep him safe. I told him I loved him. He asked me to be with him more.

Within five minutes, his moment of reality was over. He was talking about meat tv???? I had to leave the room to finish my cry.

February update

It's been a month since I've written here.  What used to feel helpful - writing in this blog - now feels sad and hard.  I'm not sure if this is good?  Keeping things inside, not sharing or not feeling tends to create chaos and mess in my life.  Not good for Ed or me.

Lately things have just been too much.  It's exhausting.  I thought having him in the nursing home would give us both a renewed view of being husband/wife and not caregiver/patient. Instead, it's just a whole different host of crazy, sad feelings.

Ed's been hallucinating again.  Non-stop.  Last week, he had one super clear, "old" Ed day.  He was engaged, happy, talked about the future, had a list of things he wanted to get done that day.  The day after, he was still pretty lucid but so tired.  That burst of energy wiped him out.  By day 3, he was out of it and seeing monkeys across the street.

Ed's body is chugging away, so physically, he's relatively ok.  His breathing is good.  He's gained weight, which is great.  His appetite is great.  So all that is good news.  It's his brain that's failing him.

He's hallucinating the craziest things.  This morning when I called, he was at the golf course. His nurse was in the room and said he was having a good round.  He's seen a bird on my head, monkeys across the street, a cake plate on the ceiling, he doesn't remember me, he forgets how to use the phone.

This happened in September and October when he was at home; this got him to the VA for a month, which led him to the nursing home.  At the VA, his brain cleared up.

3 months later, he's back to these full out hallucinations.  No one seems to know what it is. At the VA it was a urinary tract infection.  Or maybe it was all the medications he's on.  They treated both down by giving him antibiotics and weaning him off all narcotics.

Now, at the nursing home, they say he doesn't have a urinary infection but are giving antibiotics anyways. Nursing home doc is reluctant to take away narcotics.

His hallucinations are fairly gentle, sometimes funny.  Once in a while, he gets paranoid but it's usually easy to direct his thinking in a different direction.  The thing is, it's exhausting. His brain is on overdrive.  He talks non-stop.  He gets frustrated if I don't understand.  Like the bird on my head. He was so mad I couldn't figure out how to get it off my head.  Apparently, I kept grabbing at it wrong.

Ed knows something's up.  He believes his version of what's in his head but he knows something's off.  Probably by the look on my face.  I try to go with the flow and pretend I actually do have ironing boards in my lap.  I try to remember it's the illness that makes him forget I'm his wife.

I cannot imagine how folks who care for their loved ones with Alzheimers do it.  The physical loss of ALS has been awful but lots of people deal with loss of mobility. There is technology and equipment and ADA laws for wheelchairs.  Ed felt some freedom when he could control his wheelchair.

Being bed-bound is a whole different thing and we're dealing with that.  When he's lucid, he's talking a bit about quality of life issues.  That's a whole different subject.  This loss of awareness, of memories, of time, people, place and space is so heartbreaking.  At times, I think it's good he doesn't remember he can't move.  Other times - and probably selfishly so - I want him back.

My biggest concern or question is - is this how it is now?  Are the hallucinations just the new normal? I can't imagine it is, considering the past circumstances.  I have this need to get him "fixed."  To keep advocating for his lucidity.  But I'm not quite sure what I'm fighting for anymore.

So that's the update.

There's no space for fear...

Sunday night.  Got home from the  nursing home about an hour ago.  The ride home is always rough. I get a good cry.

Ed's ok.  He's not really his "old" self.  At the VA, for a time, he was.  He was clear, lucid, smart. This was in November.  Even he said he felt better, more like himself, than he had in a long, long time. Now, at the end of January, he's just ok.  Weaker for sure.  But I'm trying to figure out him.  Usually I think he's here with me - pretty lucid.  Sometimes, though, I'm not 100% sure.  

It's little things like not remembering I was with him the night before.  Or if it's night or day. He'll wonder when we're going someplace but doesn't know where.  I try to be gentle with the fact we're probably not going anywhere anytime soon.  

We tried last week - when it was warmer.  We were going to see a movie but when I got to the nursing home, he was freaked out.  I can read him so well now.  He had those scared eyes.  I told him it was ok - we didn't have to go.  Maybe a movie was too big for the first outing.  Maybe we just needed to get him in the van and drive a block and come back. We didn't go to the movie.

Mostly, it's all good.  Like in this picture.  We sit next to each other.  I hold his hand - like I'm his anchor and I keep him from floating away.  

Around 6 pm most every night - when it gets dark - he has a panic attack.  I can tell.  We'll be watching the news and suddenly, he's agitated. Making noise, moving his toes. 

Within minutes, he'll be panicked, shouting to get off the blankets, turn down the heat, move his arms around.  

I try to anticipate it without making too big a deal of it.   Rub his legs, his hands.  Brush his hair.   In the end though, we always end up with an extra dose of anxiety medication.  Maybe we should just start with that.

Ed's vitals are good - his blood pressure is a little high.  His breathing is good.  His attitude is actually really positive.  Tonight, he got his catheter pulled out.  It was, at first, pretty painful and gory.  The nurse asked why we had it and honestly, I couldn't remember. Hospice shoved it in him back in September and that led to hallucinations and the trip to the VA.  I honestly think hospice did it out of convenience.  Once he got bedbound, it was too hard to use a urinal.  We never had the conversation, though, about why.  And we never revisited the why.

Tonight, the nurse decided to take it out; it seemed painful and tender.  At first, it was awful to see Ed worry about whether he was going to wet the bed, see him in pain as he peed, it was hard to hear him say he didn't want to pee because it scared him.  

A few hours later, he woke up and was smiling.  He said he felt soooooo good!  It didn't hurt to pee, he didn't feel like he was connected to tubes, he felt pretty free wheeling!  I had to laugh - it made my heart happy to know that's the old Ed... he's still in there.   

I want him to feel loved, secure, comfortable.  I think he does.  I hope he does. We both have a great support system of friends and family.  

Time is weird.  I feel it breathing down my neck, like I don't have much time left with Ed.  

Our time is so limited.  He could be here another year, maybe more.  How lucky I will be if he is.  

But time at the nursing home almost stands still. It's quiet, we're quiet.

I used to be able to share my fears, concerns, dreams with Ed.  But now, that's too much.  It overloads Ed's sensibilities.  Instead, it's all about the moment - being present with him, making sure he's happy, peaceful, content.  I keep my fears, concerns, dreams to myself.  I think I can deal with things later.  When there's more space for those things.  

Waiting...

This feeling, this lonely sad feeling is hard to describe.  It's consuming.  I think it's ok.  I've tried to push it aside, thought about re-engaging with the world.  But I can't.  I want to spend every moment with Ed.  I feel a shift in his demeanor.  Something is lurking around the corner.  I know it.  We've been through this enough in the last 3 years that I see the signs.

But what?  What's left for Ed to lose?  He's totally immobile.  He can't move his head anymore.  He can't eat anymore.  The next thing for him to lose is his voice.  The thing that's kept us connected for the last 3 years.  I get to hear that he loves me.  He can tell me what hurts, what he needs.  I've become obsessed this past week with what happens when he loses his voice.

We met with our speech therapist today to see what kind of technology is available.  We know there are programs out there which will allow Ed to "talk."  My worry is his energy level.  It's gotten harder for him to sit up in his wheelchair.  It's hard to use the computer in bed because his head doesn't move.  It takes a lot of brain power to concentrate on the program and sometimes, Ed just doesn't have it.

So what happens when he can no longer communicate?  I don't have the answer.  We're still working on the computer... we'll see how that goes.

I wonder if I'm being too negative?  Looking for signs that aren't there?  Whatever is going to happen just will happen.  I can't prevent it.  Even when I gear myself up for something, I'm still surprised when it happens.  Heartbroken.  How must Ed feel??

We're at a point where I can't really talk to him about it.  We used to.  Now he seems far away.  If you sat with him, he'd be fine.  Quiet, maybe.  Or he might fall asleep as you talk with him.  Lots of drugs, I think.   No energy.  Plus I don't want to talk to Ed about sad things.  I want him to feel love and happy and comfort.  I spend lots of time touching him, massaging his swollen, heavy arms and legs.  We don't talk much.  We did a crossword puzzle about a week ago and it made him anxious.

This is hard.  It's going to get harder.

I think it's ok to be this sad.  To mourn the loss of our relationship, the loss of having him here at home.  It's amazingly scary how easy the tears just flow.  Sometimes it feels good to let it out.  Other times, the sadness is too much.  I hope if I get it out now, when he dies, I won't have any tears left.

Added:

This is the question I just asked my online ALS group:

I've been thinking about this a lot the last couple of weeks. Our ALS doc discussed end of life with us way back when end of life seemed far off. Back in the day when we were worried about other stuff like losing his job or his legs. Our doctor said my husband has control over when he wants to die. He'd stop tube feedings. It's up to him/us - along with input from the doctor - when this happens. I keep hoping he'll just pass peacefully. And maybe he will. We have an advanced directive but it never included this locked in scenario. We're getting closer to it. He's completely immobile, recently lost use of his head. He's tube fed but he can talk. His voice is going. We're in the process of getting an eye gaze system. That being said, he's so tired. He's rarely in his wheelchair anymore. I worry about his lack of energy in order to use a communication program. I guess my question is - have you thought through this scenario? Once bedbound and locked in, what next? We've discussed some of it -- but not really pinning it down. Can it be pinned down!?? If he's unable to communicate, how will I know? Ugh. Tears. I hate this.


These are the thoughts that keep me up.