Night

[MODArtemis2019]

I find nighttime, specifically bedtime, to be the hardest part of the day. I can spend a busy day at work and home, doing all the things that have to be done, and I'm ok doing it all. But when bedtime comes, the quiet in the house (aside from my three lovable felines) reminds me of what is missing. Just to say, "Goodnight sweetheart, sleep well," and hold hands, maybe talk a little. Just that simple thing is something I miss so much. Just to reconnect at the end of the day with the person you love most, who loves you most. So precious. 

[dailystruggle]

Artemis, Night and first thing in the morning.  We were both retired, so morning allowed us to have coffee, talk and plan the day.  It's tough.

[KayC]

2 hours ago, Artemis2019 said:

I find nighttime, specifically bedtime, to be the hardest part of the day. I can spend a busy day at work and home, doing all the things that have to be done, and I'm ok doing it all. But when bedtime comes, the quiet in the house (aside from my three lovable felines) reminds me of what is missing. Just to say, "Goodnight sweetheart, sleep well," and hold hands, maybe talk a little. Just that simple thing is something I miss so much. Just to reconnect at the end of the day with the person you love most, who loves you most. So precious. 

Oh yes, that was the hardest for me too...night time and weekends.  I thank God I had my job to go to when he passed because if it did nothing else, it filled some time in a supportive place. Unfortunately my job ended within months.  THAT was hard.

I remember being frantic nights/weekends, pacing, needing to talk to someone, I was a mess.

[SBA]

I too have trouble with week-ends.  I am also thankful that I still have my job.  I dread Friday evenings so much and sometimes do not even go home, just get in the car and go someplace.  I used to love shopping, now I can hardly go by myself.  I look on the outside like I am doing well, but inside I am still grieving his loss and miss him so much.  It is hard to remember what "normal" feels like.  When I am with friends and they go home to their husbands, I try to remember what that felt like and all I feel is sad. This journey is long and hard.  Here I am 70 years old, with a loving, busy family and I feel alone.  

[foreverhis]

NIght, especially bed time, is still impossible for me.  It doesn't matter if I take my sleep aid because every time I try to just go upstairs and go to bed, I toss and turn and have so much trouble sleeping that I don't even bother now.  I have the TV in the background and lie on the sofa with a blanket.  After a while, I fall asleep and then wake up just enough later that I can stagger up to bed and crawl in for a few more hours of sleep.

The concept of "a good night's sleep" seems so foreign these days. Maybe it's partly that my sleep-wake cycle was constantly disrupted for more than a year while my love fought his cancer.  Whether we were at home or he was in the hospital (with me there many, many nights) or rehab (I was not allowed to spend the night).  Whether he was at home or not, I slept with my "mom ears" so that the slightest thing woke me.  At times, I had to set alarms at home to take care of specific things in the middle of the night.  Uninterrupted sleep became a distant memory and still is.

It's so hard when the house is dark and still because there is no way to ignore how alone and abandoned I feel.  And it's not as if I can blame him because he did nothing wrong.  He didn't want to leave me or us.  In the dark and silent house, my mind takes me back to all those painful moments, especially the ones where I know I could and should have done better.  I'm really good at beating myself up when there are not distractions to help me keep a narrow focus.

Yeah, night and the moment between sleep and waking are still the worst times of the day for me.  And no one in my life really understands that fully.

[SBA]

I understand this fully.

[dailystruggle]

Foreverhis,  My husband battled cancer also.  2 1/2 years total, but the last several months were the most intense.  I do beat myself up that I should have been better during that time.  I was SO sleep deprived that I was never really at my best. I'm haunted that I couldn't really take the fear, anxiety and pain from him. I slept in the hospital many nights, and then in a chair next do his bed when he was on home hospice. Our situations sound similar in that way.

Stepping back, I can tell you that you were THERE.  You weren't perfect because you are human.  But you were there and he was loved.  What a gift you gave him.

I'm working on telling myself that, too.

[KayC]

I think we all understand.  Hoping we can all be understanding to ourselves...

[foreverhis]

1 hour ago, KayC said:

I think we all understand.  Hoping we can all be understanding to ourselves...

That's one of the most helpful things about being here.  But that's also the trick isn't it?  I am so much harder on myself than I would ever be on someone else, especially someone I care about.  I can offer compassion to others, but am having a hard time finding any for myself.

 

21 hours ago, SBA said:

I understand this fully.

Thank you, I am certain you do and that is so comforting.

 

20 hours ago, dailystruggle said:

Foreverhis,  My husband battled cancer also.  2 1/2 years total, but the last several months were the most intense.  I do beat myself up that I should have been better during that time.  I was SO sleep deprived that I was never really at my best. I'm haunted that I couldn't really take the fear, anxiety and pain from him. I slept in the hospital many nights, and then in a chair next do his bed when he was on home hospice. Our situations sound similar in that way.

Stepping back, I can tell you that you were THERE.  You weren't perfect because you are human.  But you were there and he was loved.  What a gift you gave him.

I'm working on telling myself that, too.

Yes, it does sound as if our experiences through the cancer journey are similar.  You're right about being so stressed, so worried, so focused on "what's next, what can we do," and so damn sleep deprived that I was not at my best for a really long time.  We even argued some and when he had his hospital-induced delirium, I was not exactly a paragon of virtue.  He demanded to leave the hospital and was convinced we were there to harm him.  I did not react well to that.  We got through it, but I regret so much some of the things I said to keep him where he absolutely had to be. 

And then there was the GD cup of coffee.  See, we were home and he had spilled coffee a couple of times, which was really unlike him.  He couldn't help it, but had promised to be more careful because he wasn't getting the cup fully on the table.  Well, one morning he was tired and hadn't wanted to get up to go for a needed MRI.  I was rushing around on little sleep and tons of concern.  He spilled his coffee (with cream and sugar), which meant I had to clean up the chair and carpet, and help him clean up and change.  I had to cancel his testing and to my great shame I yelled at him.  I mean really yelled that he had promised to be more careful and etc. We never sweared at each other, not then, not ever.  We rarely yelled at each other.  Later, of course, I apologized to him more than once, but the look on his face when I yelled at him that day will never, never leave my mind's eye.  He was fighting to stay alive and I'm upset about coffee.  I mean, I know the coffee wasn't the real issue because I was so angry and fearful about everything.  And I know I am a far from perfect human being.  Still, I can't help but look back and think, "I should have been so much better.  He deserved so much better from everyone."

I would never have deserted my love.  That is the one thing I pray he knows above all else.  I would have taken care of him forever, no matter what.  His last day while I was playing some of our favorite music for him, I put our daughter on speaker phone so she could talk to him, even though he was unable to really speak then.  I know he needed to hear from both of us that we knew he fought hard, that he was a wonderful husband and father, that we were sorry, that we had been lucky to have him, that we loved him, and that it was okay to stop fighting.  I said those things many times late in the day, hoping that he could still hear me.  All day I talked to him as if he could understand every word I said.  They say we can still hear up to the very end and I really hope that is true.

It is all these things that haunt me when the house is dark and still with no distractions to keep them at bay.  I suspect that it's similar for you and many other members too.

[dailystruggle]

Oh boy, forever his, do I ever understand.  Richard and never really fought either.  I told people that trying to fight with him was like trying to fight with a Labrador retriever.  One reason we didn't fight, is that I couldn't stand the look of hurt in his eyes.  When his health started to really spiral, we were in Florida.  We had driven out for a variety of reasons.  His swallowing quickly became  difficult during that trip, and a swallow study out there said that he was aspirating all fluids. So he headed home.  Although many friends and family said they would fly out to help him fly home, and me drive back- he insisted we do it alone. I thought we needed help.  We were at our first stop in Memphis, when he said he wasn't going to make it.  I really flared at him. I'd already lost a lot of sleep because of his inability to breathe and eat well.  We kept the room at 80 degree, nighttime was very anxiety provoking for him.  He calmly told me that my attitude wasn't helping.  I reeled myself back in, got him on a plane, and drove back to Ca.  I got home Thursday night.  Feeding tube surgery was Friday morning.   It was rapidly downhill from there.  2 different stays of 8 days each.  Malnutrition first, then an inability to breathe which required a tracheotomy.  It was a few months of very intensive at home care after that.  He was cold all the time and we continued to keep the house at 80 degrees.  The feeling tube was easy, but the tracheotomy required care about every 2 hours.  Family and friends helped, but mostly, he wanted me.  I became numb.  I went through what needed to be done, but I wasn't really emotionally present for him.He deserved better than that.  He deserved me being PRESENT during this sacred time.  And I just couldn't.

[dailystruggle]

And here we are.  It's night again.  This is so unbearably hard.

[widower2]

Jesus. What you people are saying hits home. Not just about bedtime/nighttime, and yes that was the worst for me. In the early days, going to bed at 3 or 4 AM was common. I simply dreaded going to that bed "alone" (at the time I still had our dog, which was a big help, but still there is of course that gaping hole), but more generally, just feeling like how could I not have fully (or even gotten in the ballpark of "fully!") appreciated the nightmare she was going through.  I wouldn't expect perfection from myself, but I fell so (SO) far short of what was even reasonable to expect. I disgust myself in an extreme I can't explain for my stupidity and failures. 

I'm so sorry for your losses and your struggles. It helps me somewhat to know others are there or have been there, not just with the loss but with all this emotional sh## that goes with it; I hope it helps you as well, at least a little.

[KayC]

20 hours ago, foreverhis said:

Yes, it does sound as if our experiences through the cancer journey are similar.  You're right about being so stressed, so worried, so focused on "what's next, what can we do," and so damn sleep deprived that I was not at my best for a really long time

I even experienced that with my dog...the difference being that with my dog, after two months ten days I could have him euthanized instead of watching him suffer to death.  I didn't have Morphine for him but I did give him help oil and it helped him a lot...to a point.  I was so focused on keeping him eating and I regret that, I should have let him be, how would I feel if someone tried to make me eat when I didn't feel good?  I've regretted that since, maybe I should have let him go sooner.  I hope he knows that everything I did, I did from a heart of love.  The pain of regrets are unbearable!   He couldn't even talk to me about how he was feeling, yet I could tell.  I also need to learn to forgive myself...I also was sleep deprived, worrying about him.  I can't imagine going through this for years with your husband.  I went through it for three years taking care of my MIL but had relief at night as my FIL took over then.  What we go through!

20 hours ago, foreverhis said:

I put our daughter on speaker phone so she could talk to him, even though he was unable to really speak then

I literally forced George to talk to his daughter on the phone the night before he died.  I knew he didn't want to, he had just found out the results from the heart tests and wanted to be left alone to assimilate it.  But she really wanted to talk to him (she lived across the country and he'd looked for her all the years since his XW divorced him when Tracey was 2-3.  They'd only been in touch a couple of years or so.  This particular night she told him she loved him and called him Dad...it was the only time she did.  I know if he'd been in his right mind it would have meant everything in the world to him, but I'm not sure he could even hear/understand it at the moment, but it meant something to her and she needed to say it.  I'm glad I pushed the issue, even if he couldn't process in the moment.

18 hours ago, dailystruggle said:

He deserved me being PRESENT during this sacred time.  And I just couldn't.

What I take away from this is that this is not just something they went through, it's something WE went through too!  And just as they were limited with what they could do, so were we.  We gave our best, what more CAN we give?  We are human, we have limitations and our limits were maxed and stretched to the hilt.  We NEED to be understanding of ourselves!  And if they now have full understanding as I think they do, now being well in mind and spirit, they get it, they get it all, they love us, they appreciate us being there for them.  

10 hours ago, widower2 said:

It helps me somewhat to know others are there or have been there, not just with the loss but with all this emotional sh## that goes with it; I hope it helps you as well, at least a little.

Yes, this.  I love you all, you understand, this is the hardest thing in the world to go through, even all these years later it can still be such a struggle...maybe not as much as in the beginning years, but we still wrestle with it.  

[Rhonda R]

On ‎11‎/‎12‎/‎2019 at 2:56 PM, dailystruggle said:

Stepping back, I can tell you that you were THERE.  You weren't perfect because you are human.  But you were there and he was loved.  What a gift you gave him.

One of the best things my therapist ever told me was, "What would you say to a friend in the same situation."  I would say it and then she would say, "Why can't you say that to yourself?"  I know in my heart of hearts, I did the best I could as a human being who is not perfect.  Who is flawed.  Who gets exhausted and frustrated. These are all the things that make us human.  It's hard to stay upbeat, positive and Nurse Nightingale when your world is suffering from something that is sucking the life right out of them and they have to ingest poison to try to live or worse yet, slipping away from you and there isn't a damn thing you can do about it.  When my husband was in pain or not in a good place, he would put on a false face of bravery for everyone else.  I was the one he snapped at once in a while.  I was the one he was honest with about his fears.  Why, because he was human too and I was the closest person to him.  We didn't have to be fake with each other, we knew each other inside and out and I know all of you did too, whether words were spoken or not. 

[dailystruggle]

Thank you, Rhonda.  I have to keep reminding myself of that. KayC, thank you as always, for you wisdom.  The last few days have been awful.  I really hate this empty house in the evenings.

[Glolilly]

Some things that I do to help the quietness is turning the radio on getting up for work and when I'm washing dishes, having both tv's on, bringing books, iPad and cellphone to bed, hugging my pillow at night on my side. Talking to family, friends on the phone before bedtime. Watching Netflix in bed while sipping tea or eating popcorn. Listening to neighbor's dog barking. Playing tic tac toe or other games on cellphone until I'm sleepy.The bible will definitely put one to sleep, lol. I may get some other noise automated item if it's soothing to me.

[dailystruggle]

Glolilly...perfect. I have audible books on my phone. I don't care what the story it is, it's nice to have the drone of a voice lull me to sleep.

[KayC]

19 hours ago, Rhonda R said:

One of the best things my therapist ever told me was, "What would you say to a friend in the same situation."  I would say it and then she would say, "Why can't you say that to yourself?"  I know in my heart of hearts, I did the best I could as a human being who is not perfect.  Who is flawed.  Who gets exhausted and frustrated. These are all the things that make us human.  It's hard to stay upbeat, positive and Nurse Nightingale when your world is suffering from something that is sucking the life right out of them and they have to ingest poison to try to live or worse yet, slipping away from you and there isn't a damn thing you can do about it.  When my husband was in pain or not in a good place, he would put on a false face of bravery for everyone else.  I was the one he snapped at once in a while.  I was the one he was honest with about his fears.  Why, because he was human too and I was the closest person to him.  We didn't have to be fake with each other, we knew each other inside and out and I know all of you did too, whether words were spoken or not. 

It's neat that your therapist told you that, I've heard that many times, mostly from fellow grievers on my grief sites.  It's one of the best things I've heard or could employ.

I love all that you say here, it's special that you and your husband could be real with each other, I think it's that way for all of us here, they are the ones we could let down with and them with us.  We always understood each other.

[foreverhis]

On 11/14/2019 at 10:08 AM, Rhonda R said:

When my husband was in pain or not in a good place, he would put on a false face of bravery for everyone else.  I was the one he snapped at once in a while.

My SIL is a certified group leader for caregivers and survivors of Alzheimers and other dementia patients.  She was the primary caregiver for her mom and her MIL.  I talked to her multiple times when I was in distress over my husband "taking out" his fear, anger, and confusion on me, especially when the effects of systemic infections and cancer treatments made his brain go sideways temporarily.  I didn't always handle it well at all.  She told me that it's very typical for patients in that state to lash out at the one person in the world they know deep down will be able to forgive them easily.  Also that they lash out at us because we are the ones who are there day and night.  We're basically the one consistent in their lives, so we are the easiest "targets" when they get overwhelmed.

When she'd say, "You know that's not the real him talking, right?"  I'd acknowledge that I did. It didn't make it hurt any less, but it did help me understand it.  People really do not understand this journey unless they have or are living it.  And the thing is that I don't want the people I love and care about to be able to understand it the way I do.  Still, I know that as times go on, more and more of them will.

[KayC]

16 hours ago, foreverhis said:

When she'd say, "You know that's not the real him talking, right?" 

Thank you for that.  I haven't been able to talk about or even acknowledge it but when George was on his death bed...

He always spoke kindly to me, rarely a harsh word.  We always understood each other, had faith in each other.  But that last weekend, the way things unraveled, I was stuck 4 1/2 hours away, I had no idea when I set out for my sisters weekend he'd have a heart attack and land in the hospital...I hadn't even left town yet when it happened but he wouldn't let the doctor notify me...he didn't want to "ruin my weekend."  That put me in a dilemma when I did finally find out that night.  My sister would not drive me back, I wanted her to.  She has a gambling addiction, she lets nothing interfere with it.  It's ugly but it's the plain truth.  She rewrote history since...I confronted her with the truth, all these years later.  She got quiet.  She could no longer deny it to me.

But back to George...I was on the phone with him the following night after he'd spent the day in testing.  He had told me not to come that day, that he would be in testing and wouldn't be there, but now when confronted with what I've later learned was life/death issues, he was grappling to come to terms with the fact that he wasn't going to live.  I didn't yet know that.  He lashed out at me and said, "I'd have walked around the world on broken glass for you."  He was berating me for not being there.  Did he really want me to hitchhike back?  I don't think so, he'd never want me to endanger myself.  I knew I was damned if I did, damned if I didn't, it wasn't about what I should or shouldn't have done, it was about him having a hard time coming to terms with whatever he'd just been told from the surgeon.  I was the closest person to him so he felt more comfortable lashing out at me, I realized that.  I still didn't know he was going to die, I don't think I knew that until the next day when the surgeon explained things to me.  I couldn't grasp what he was saying, his voice got far away and quiet, I was in shock.

But it's a hard thing to live with when this has been your conversation and then he dies the next day.  At least I made it back beforehand.  I wish they would have let me stay with him though.  Damn I hate that weekend! I hate everything that happened!  It's been hard to live with ever since. 

But this one thing I know:  we love each other, we were good to each other throughout our all-too-short lives together.  And we knew the other had our best interest at heart.  No matter what happened, what was said, that still holds true and that's what I hang onto.

[dailystruggle]

Oh, KayC. My God you were put in an absolutely impossible situation.  You must have felt so very helpless.  

Hang onto what you know.  That's your foundation.  You didn't have one bit of control over anything else.

Hugs,

Deborah

[KayC]

Thank you.  It was awful.  I hang on to our love, I know it's true.

[Rhonda R]

I’m sorry that happened. I can’t imagine your frustration having no say in the matter. You didn’t know. How could you have known?  
Our spouses were human too. I remember being so hurt when Randy would snap at me. I thought, I’m doing everything for you. For a minute, I would really resent it and then reality would slap me in the face. It’s all just so very hard. Hugs to all of you!