The Night My Husband Died

by Karen on April 4, 2017

in Steve's Cancer Updates

I remember the night my husband died as if it was yesterday, but really it was 5 months ago that I would wake in the middle of the night to hear him mumble for the last time “I love you too”.

Friday, November 4, 2016 Steve was transported to the Hospice home in Providence, RI.  We (Mark and I) wanted him to go the day before, but he told us he didn’t think he was ready and wanted one more night.  When he was placed on hospice less than two weeks earlier, we discussed that he would be transferred to the home before he died.  We didn’t want him to die at home.

Friday morning we got up and started getting him ready for the transport company to come and take him from our home.  Some of his closest friends were there that morning, which I was and will be forever grateful to them for.

I was a mess. I felt like I was living a dream, like it wasn’t really happening.

I was going through the motions as I tossed some clothes for me, into a bag not knowing how many nights I would be there until he died.  I wasn’t leaving his side, not even for a minute.  I honestly didn’t even know what I was going to do, or what to expect.

His parents and aunt and uncle arrived at the house right before the transport van came.  I felt awful that they were going to see him leave like this.

I got into the ambulance with Steve and as they shut the door, I saw two of his closest college buddies along with Mark, stand there and watch us pull out of the driveway and see their friend leave his home forever.  I had tears in my eyes but I can’t even imagine how hard that was for them.

And all I thought as the van pulled away was that he’d never be back at this house again.  But now that I’m typing this, I can look back and realize that I honestly had no idea how that would be for me.

The ride over was fairly short but very quiet.  He laid there with an oxygen mask on, so he couldn’t really talk so I just held his hand, and I believe I kissed it a few times.  I didn’t know what to say, because at the time there wasn’t much to say.  Over the 2+ years prior to this day, we had always said everything we needed to tell each other.  I just soaked up the time with him.

He was comfortable.

He was ready.

We arrived at Hospice and I was surprised at how quickly he was brought to his room and settled.  The nurse sat me outside his room right after she assessed him, and told me that the signs were there.  She didn’t actually use the word “dying”, but I knew what she meant.   She told me it probably wouldn’t be too long, but he was young and had a healthy heart, so it could be a couple – few days before his heart would give out.  She said she’d keep me updated as she saw more of the signs.

She suggested I have our priest come see him as soon as possible.  I called him but he had a party for the church he had to be at that night and he said he’d be by in the morning.  A friend of mine called our old priest, who happens to be hers now, and asked him to visit Steve.

His friends that were at the house, along with his family and mine, piled into the room shortly afterwards.  He was still pretty alert but we could see his fine motor skills slowly becoming impaired.  I fed him some yogurt with the assistance of my brother, who lifted and replaced the oxygen mask each time he took a bite.  We laughed about it and a few other things and it was like business as usual.

Steve never skipped a beat.

He even joked with my cousin Danielle when she tried to help him put on chapstick, reminding her that he’s been doing that longer than she has been a nurse!  We all got quite the laugh out of that and talk about it still months later.

His sense of humor was still there.  The Steve we all knew and loved was still there, even if he was “showing signs”.

I’m not sure I truly realized that he was in the final stages of death at that point.  I don’t think anyone could have told me anything specific to make me realize that.  Perhaps it was a defense mechanism, or just because when you love someone, you can’t really accept what you are seeing right before your eyes.

The family left and then our friends left except for my three guys Jeff, Mark and Kevin.  Everyone gave Steve hugs and kisses and told him they’d see him in the morning.

None of us knew, that wouldn’t be the case.

My guys (as I like to call them cuz they are amazing friends) went to get dinner for the four of us.  My mom brought Holly to see Steve, Allison had gone to a birthday party for a school friend.  While the 4 of us ate dinner, Holly and my mom visited with Steve.  Looking back now, I’m so glad we were all out of the room as it gave Holly some one on one time with Steve, time that she desperately needed.

After dinner Mark asked me what I wanted to do about the night… did I want him to stay or go back to the house and give me time with Steve.  I went back and forth so many times, not sure if I wanted him to stay or not.  Part of me wanted to be alone with Steve, but the other part of me wondered if I’d need Mark…. if the night wouldn’t go so smoothly and I’d need someone there for me.  Finally I decided to have Mark stay, just in case.

I had no idea how much I would need Mark that night.

Jeff and Kevin were the last to leave, and they went back to my house.   The priest came and the 4 of us had a great conversation.  Steve was still very alert, and resisting sleep for a while.  Father Wilson anointed him with oil and we all prayed together.

It was only about 9pm but Mark and I urged Steve to go to sleep. He was resisting it as if he knew he wasn’t going to wake up again.

Then he wanted to get up to go to the bathroom.  The nurse suggested she put in a Cather but Steve refused.  She explained to Mark and I that she didn’t think he was actually emptying his bladder because he hadn’t drank much and was very restless.  She said she’d seen it before in patients and the restlessness is usually due to a very full bladder, but the signals aren’t there anymore for them to empty it completely.  Steve did not want it.  I asked her at what point do I just tell her to do it and she said really at any point but it’s just easier if the patient agrees.   I believe it was Mark who finally got Steve to agree to it.   Low and behold, his bladder was FULL and shortly after that, he was less restless.

These nurses were AMAZING!

We finally got him to sleep.

Mark and I then had some laughs while we tried to open up the bed.  We had NO IDEA how to open it and it looked so simple. We knew that the nurse would come in and do something and boom! It would be open.  Guess what?  That’s exactly what happened.  We laughed so much and will probably laugh at that for a very long time.

Mark is an amazing friend and we now share a bond that will forever keep us together.   I’ll share below the events that lead up to Steve dying, but reading it doesn’t do it justice.  Being there was something I can’t even put into words.  Only Mark and I know.

About 1:30am, the nurse woke me to tell me that he was sleeping in an awkward position and wanted to know if I wanted her to move him.  She said he was breathing fine, but just didn’t look comfortable.  I told her to leave him as I didn’t want to disturb him.  She then proceeded to tell me she’d been checking on him every hour and he’s continually showing signs.

There’s that term again “signs”.

So I pulled the bed I was sleeping on closer to his bed (I was a few inches away) and grabbed his hand and quietly talked to him.  I just reminded him how much I loved him and that we would all miss him so much but we’d be okay.  I told him I’d always take special care of the girls and make sure they always remembered him.

I then fell asleep again holding his hand.

AND THEN IT ALL BEGAN.

It’s hard to really put into words how this experience actually was.

About an hour or so later, he work up gasping for air.  He was pulling his oxygen mask off and making all sorts of noises – moaning, grunting, gasping – and he was trying to sit up.  I buzzed the nurse to tell her he was extremely restless and pulling off his mask.

Two nurses came in immediately and tried to calm him and gave him some medication through his port and his other IV.  Mark and I kept telling him it was all right, and asking him to calm down.  We kept telling him how much we loved him and that he was going to be okay.  But he insisted on taking off his oxygen mask each time we’d put it back on.  I was begging him to keep it on because I didn’t want him to suffocate (which was his fear).  I also told him over and over again that I loved him.

And then through all his moaning and grunting, I heard the words I’ll never, ever forget… he said “I love you too”.

Finally the nurses told us to let him have his way. If he didn’t want it, then it obviously wasn’t helping him much.  So we stopped making him put the mask on.

During this time, Mark and I both reassured Steve that we would all be okay, and it was okay for him to let go.  We told him over and over again how much everyone loved him and how proud we were of him for the fight he put up, but it was time for him to be at peace.

We had been told that was very important for them to hear.  I knew he could hear us since he had replied to me earlier.  But it didn’t seem to help.  He was still very agitated.

I walked away for a little bit and then came back with an idea.  I winked at Mark as if to go along with me and told Steve that I had just talked to his parents and that they wanted me to tell him how much they loved him and that they would always love him and that it was okay for him to let go.

Shortly after that, he calmed down a little bit but was still moaning very loudly.  They continued to give him more meds to help him relax but it didn’t seem to be working.  The nurse told us that at this point she thought his liver had shut down and it wasn’t metabolizing so the medicine wasn’t getting anywhere.  She said that despite the moaning, he was actually comfortable and not really in pain or discomfort.  He had laid back down and looked more comfortable but just kept moaning.

At this point it was about 5am.  The last hour and a half seemed like minutes.  Mark and I sat across from each other just staring sort of like “What the Fuck just happened”.  I was exhausted yet wide awake.

The nurse brought me coffee and Mark and I decided to have our dessert we didn’t eat the night before.  We sat in silence as we ate because honestly there was nothing to say.  We both knew he was dying and we were a little traumatized by what had just happened.

The nurse came back to check on him and at this point he was very still, and his moaning was getting softer and softer.  She told us that it would probably be before her shift was over.  I asked her what time that was and she said 7am.  It was about 5 – 530 I believe..

I don’t think time even meant anything to me that morning.  I don’t think the fact that she just told me he’d probably die with the next hour and half even registered in my mind.  We weren’t looking at time, we were just there in the moment.  It was the oddest thing.  Time didn’t exist to me.

I would have climbed into bed with him at that point if I could, but there wasn’t room and we didn’t want to move him, so I pulled my bed even closer to him, put my pillow next to him and laid there holding his hand.  It was silent in the room except for the him.  At this point he was moaning even softer than before.  I just laid there listening to him and my eyes closed and I dozed off…. holding his hand.

In and out of sleep I noticed it had gotten quieter and quieter but it didn’t really register in my mind what was happening.  I also didn’t know that Mark was awake that entire time, watching Steve, talking to him quietly and watching him breath slower and slower… and less and less.

I woke and noticed silence and then heard Mark’s chair move.  He came to my side of the bed and quietly said to me “I think he’s gone”.

I sat right up, calmly looked at him and he looked very still.  I asked Mark to get the nurse.  For these few minutes, I remained surprisingly calm.

She came and checked all his vitals, which by the way seemed to take 10 minutes, when in fact it was only about a minute.  She them told us he was gone.

Mark left the room.  If we had any exchange of words, I couldn’t even tell you.

Now I was alone with him and it was so quiet… a quiet I will never forget.  But that quiet didn’t last very long.

I crawled into bed with him and cried. I cried in a way I have never cried before.  I touched his skin, I inhaled his scent, I ran my lips across his checks, his hand, his arm.  I absorbed him every way I could and I just cried and cried and cried.  It was the worst moment of my life, yet I didn’t want it to end.

The nurse came in and urged me to let her give him a bath, shave him and then I could come back in.  But I didn’t want to leave because I knew any minute his body would change and he wouldn’t feel the same.

But I did.  I don’t know how long I was in there.  I couldn’t even guess.  But I remember walking out of the room feeling a way I have never felt before.  I can’t even explain it but I felt like a different person.  Well I was, I was now a widow at 43.  A heartbroken widow mother of a 9 year old and 12 year old.

Mark was sitting on the floor against the wall opposite the door crying.  He sat there and listened to me pour out my heart and soul in tears in the room with Steve.  I can’t even imagine how that was for him.

Steve died at 6:20 am, Saturday November 5, 2016.  Right before the nurse’s shift was over.  12 days after his oncologist said he’d probably have 14 more days.

I’ve lost people that I’ve loved before, but nothing like this.  This time I physically lost a piece of my heart, my life and my soul.

And here I am 5 months later.  My heart still hurts, but not every day.  My soul still aches, but not every day and my life is still missing a piece.  But I’m getting by, I’m going on, I’m missing him and figuring out this path I’m now on.

But one thing remains the same…  I still remember the night my husband died as if it was last night.  And I probably always will.

2016 was a Gift

by Karen on January 1, 2017

in Steve's Cancer Updates

Today is a new day, and a day to look back and reflect on the year.

A friend wrote something that inspired me and made me look at 2016 differently.

My husband died, that was absolutely the worst thing that has ever happened to me. But I’ve grown so much through that, and I like who I am today.

2016 was a GIFT and I am thankful for that. I had Steve by my side for almost all of it…. that was not something we knew we would have back in June 2014.

Friends I’ve known for a long time and a shorter time came together and became friends. And all my friendships grew, tremendously!

I learned from my friends and family what it means to give yourself up for others. I learned from them what it means to be a friend.

I lost my husband but I gained a guardian angel for me and my girls.

The night he died is still so fresh in my mind, but not as a nightmare, but as a night of closure and peace. He’s no longer suffering and the girls and I can now move forward and find our new normal and live. If it weren’t for my friends and family. I could not look forward to 2017 with peace.

I’m lonely inside because I miss my husband, my partner, but my heart is full from all the love around me, whenever I need it.

Thank you to those of you who went through this year with me, who’ve carried me and picked me up and that gave me the gift of love and friendship. And for those that were by my side when I needed them the most.

Good bye 2016 – Hello 2017!

by Karen on December 31, 2016

in Steve's Cancer Updates

A year ago today Steve and I sat at chemo for his “New Year’s Chemo”. I was grateful to have him for another year. After the new year we found out that chemo would end in the fall. The doctor estimated (at that time) he would probably have about 4-6 months after chemo ended. Of course that was without knowing how the last 6 months of chemo would work. He was being optimistic.

When Steve and I talked about that, we figured we’d get through the holidays, have another new year’s eve together and then sometime in 2017, he’d pass away.

Of course we didn’t know for sure, but we were being optimistic.

wilmes-family

From the day that we found out he was stage 4, I knew he was going to die. I knew I was going to be a widow, a single mom… alone. And each time the chemo wasn’t working 100% (since the fall of 2014) I’d think “it’s coming soon“. Then things would even out for a while with “no changes” and I’d think to myself “maybe he’ll beat this or just live forever with cancer“.  Then things would change and I’d think again “okay it’s coming“. Some of you know this roller coaster I was on because I talked about it with a select few. (Only because I tried to stay positive for Steve so I kept this to myself a lot).

What’s my point? My point is I wasn’t ready for him to die in November. I knew his time was limited, but we didn’t talk about him not being here today, tomorrow or next week. We talked about having some time in 2017 together, not going through the holidays without him.

Maybe I was really in denial all this time, I don’t really think so but maybe. Or maybe it’s just that when something life changing like this happens, we aren’t really ever prepared for it, no matter how much we prepare.

I miss him. Sometimes I think maybe he’ll walk through the door. Maybe the phone will ring and it’ll be him.

Steve and I had our first date on December 1, 1998 – we were together a month shy of 18 years. 18 years is a LONG time to spend every day together (give or take a few days the first year we were dating). We had our ups and downs and for a while there our marriage wasn’t going so well. But we stuck it out and made it work because we really loved each other.

He was my best friend, the one I spent every day with, the one I told everything to, the one that protected me and held me when I was sad. I had a dream last night that I ran into someone from our past and all I wanted to do was tell Steve (in my dream).  I miss him so much.

But tomorrow is a New Year and every year brings good and bad. I feel that the worst has happened to me (it can’t get any worse than losing your spouse at 43 years old). Well I suppose… but I’m being positive. So lets see what 2017 has in store for us.

Happy New Year! Thank you all for being there for me!!!!

A month + later…..

by Karen on December 12, 2016

in Steve's Cancer Updates

It’s a little over a month later and the girls and I have began moving forward with our life without Steve.  I won’t lie, it’s awful.  Some days are okay, but lately most are not.  I’m really struggling with this.  I thought I would be okay.  I thought I was prepared for this.  I thought I grieved the last 2+ years, and I thought that was hard.  This is worse.  I was no where near ready for losing him.  I was no where near ready for the pain of missing someone that has been in my life, every day for 18 years.  Especially losing them when you have no choice.

I also thought we had more time.  I thought we had one more Thanksgiving… one more Christmas… one more New Years Eve.   But then again, I don’t think I ever really thought he was going to die.  I knew he was, but I didn’t think it would happen.  For the past 2+ years I would think every now and then that maybe they were wrong.  Maybe he didn’t really have cancer because he looked so good.  And maybe he would recover.  Or maybe he’d go on with treatments forever and ever.  Honestly the thought of that was so hard too.

No matter how many counseling sessions I went through, no matter how much stronger I became mentally over the past 2+ years, nothing…. absolutely NOTHING could prepare me for losing him.

And let me tell you, the past 2+ years have been HARD.  You all saw only what we wanted you to see, or really what Steve wanted you to see.  The struggles every day were the hardest I ever went through (or so I thought).  I loved my husband so much but I wanted chemo to end so many times because I hated what it did to him, to us, to our family.  I had no idea how much worse it would be afterwards.  If only I could go back and enjoy him, even on chemo.  Even on those days he was miserable.

When he would get really anxious, he’d ask me to lay down next to him.  Doing so always seemed to calm him, and then he’d feel better.  So many of those times I was in the middle of doing something but I stopped to help him through.  Other times I was free and more than happy to help him feel better, even just by laying on the bed with him.  Oh how I wish I could lay next to him again.  You have no idea.  It’s just awful.

Christmas is coming.  I have my tree up as of 3 days ago, but it’s not decorated yet.  We’ve had time to do it, but I haven’t felt up to it.  We will decorate it, because i need to for the girls.  But I don’t want to.  I would prefer to skip over Christmas.  I’m not looking forward to it and nothing you can say will make me feel better about it.  I’ll go through the motions because I have to for the girls, but I really don’t want to.  I just want it to be over and begin a new year.

Every year since Holly was born, my in laws have stayed with us from Christmas Eve until the day after Christmas.  When the girls were little it was hectic but that’s how we spent our Christmas.   This year Steve is gone and they may not be able to say over Christmas Eve because they are having health problems.  They may not join us until Christmas Day OR the girls and I will drive there on Christmas Day.   Another reason to not want to celebrate.

I know this all sounds awful and sad and I’m told it’s part of the process so I guess I have to go through these feelings.  Doesn’t make it fun or easy.  Next year I’ll be better, I just know I will be.  I hope.

Thanks for listening.  This too shall pass……

Shots for Steve

by Karen on November 5, 2016

in Steve's Cancer Updates

I had a house full of people today.  Just the way it should be.  My brother brought over a bottle of something for shots.  I have no idea what it was, I can’t remember.  But I do remember that I didn’t have any shot glasses so we used wine glasses.  My crystal wine glasses that I got when Steve and I got married.  So they were pretty appropriate to use!

We all got together and did a “Shot for Steve”….. it was pretty fitting considering he enjoyed himself a drink or two over the years.

shots-for-steve

A memory I will always cherish!