Thursday, November 9, 2017

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.

Tuesday, October 17, 2017

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.






Wednesday, October 11, 2017

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.

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

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.

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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

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: