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Born in the 50s

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Comment by Maggie on May 28, 2018 at 2:51pm

I my husband died of brain cancer 5 years ago. I took all my memories of my life with my him  and put them away in a box (figuratively) and I purposely do not look at it. If I did, I couldn't survive it. I moved, started a new life, new friends and doing things I never did before. I'm content, but also still lonely deep within. I miss him.

I have guilt...not being able to bring him home the last 6 weeks of his life ( I make excuses to myself as to why) and not being there when he died. He was in a nursing home, bedridden, in diapers and unmovable and I had gone home for the evening. (I went everyday). I'm particularly guilty about not bringing him home, but I don't think I could have handled it alone. (No family). Hospice in my area would only come 3 times a week, but I could have hired care. 

Our marriage of 28 years was very good the first 17 years, but the last 11 after his retirement...not so much. He was depressed and we had moved and he was out of his element and took it out, verbally, on me. 

So now the memories I let in are the ones that hurt me or angered me...his criticisms, his irritability.  I actually think about this all the time. I cannot let my mind go to the good memories where all was great and loving, because I couldn't stand it. The pain would be to much. So that is the way I cope even after 5 years. Maybe it's a defense mechanism. 

Comment by irishlady (jan) on May 28, 2018 at 2:17pm

Oh, the guilt we put on ourselves like it would have changed anything. I had to make the decision on whether to stop life saving procedures with my husband as he was in a coma. That was not as hard as it could have been, because we had recently talked about it and made out DNR orders. so, I was confident this is what he would have wanted. But I had a ton of guilt over going home the day he died and I fell asleep in his chair I was so tired and woke up with a terrible feeling to get back to the hospital and shortly after they intubated him and he went into cardiac arrest and never woke up. So, I was there, but regretted and felt guilty over the time I wasted at home. And then I could not for the life of me remember if I had kissed him and told him I loved him before we left the room for the doctors to do the procedure. My daughter said I did, but I don;t remember and wonder if she just told me that to make me feel better. will always bother me.. And when my Mom died 15 years ago, I wanted to stay that night and my husband talked me into going home and in the early morning hours we received a call to come to the hospital as she was not doing well. It was an hour's drive and we FLEW, but about 2/3 of the way there, my Mom's favorite country western song came on the radio and I knew..I just knew she was gone. And when we got to the hospital I collapsed on the floor and said to the nurse...I tried so hard to make it here for her and she said...she was not alone. That guilt lived with me for many, many years.

Comment by NoLongerInBergenJC on May 28, 2018 at 1:28pm

@Melissa, your story resonates with me as well.  The morning when my husband had had the stroke, our new cat would not go into the bedroom to eat at 6:30 AM.  It never occurred to me that he was on to something.  I did not check because I wanted my husband to sleep till he woke up.  By the time he got up and had managed to get himself into his man cave chair, he was already having seizures.  That was two hours later.  I always wonder if I'd checked on him at 6:30 if the outcome would have been different.  

Like yours, mine died 13 days later.  Did you have to have a ventilator removed?  I did.  They give you two weeks on a vent and then it's either trache-and-PEG or else palliative sedation.  And I knew both verbally and from his advance directive that he did not want to be sustained on tubes even if he were not "technically" brain dead.  They put him on palliative sedation and he died 20 minutes later.  

So I get the images frozen in your head.  I understand that frustration of being only able to remember those last two weeks.  It has only been seven months for you.  This will last a long, long time, perhaps years, as it has for me.  But it will get better and you WILL get those happier memories back.  And that is its own kind of pain.

Comment by NoLongerInBergenJC on May 28, 2018 at 1:23pm

Shelley....I am 4-1/2 years into this and only recently have I been able to access earlier memories.  For 4 years I could only remember the last few years when my husband was depressed and angry most of the time, scrambling from job contract to job contract.  I find myself listening to 1980s music, which I don't even LIKE, on SiriusXM because it brings those memories back.  They are painful, and feed into the lethargy I feel now because I just retired and I'm still trying to figure out what to do with my remaining years.  But I feel that accessing these are necessary as part of the grieving process (which I still haven't really done).

Comment by shelley on May 28, 2018 at 1:16pm

Melissa, My husband died from bacterial endocarditis (infection in the heart) with no symptoms.  He was just a little tired.  By the time I knew something was wrong and took him to the hospital, it was too late.  He had heart surgery but there was so much damage-  he never recovered from the surgery.  And just weeks before this, his cardiologist had given him a clean bill of health.  I forced myself to stop feeling guilty about the 'what if's', can't even talk about them now because I worked so hard to get them out of my head.  For the first few months after his death, I could only think about him before he went into the hospital, when he was in the hospital, and when he died.  In the support groups I was in, I would be asked to tell a story about my husband and I couldn't think of anything beyond the weeks surrounding his death.  It's been almost seven months since my husband's death, and I'm just now remembering some of the normal, day-to-day things he/we said and did.  It still feels like the decades of our lives together are in a bubble I can't access.  Maybe that's my brain trying to protect me somehow because as I begin to remember our every-day sweet and normal life, I am overcome with sorrow.    

Comment by Melissa on May 28, 2018 at 12:32pm

Riet, I know. My husband had Multiple Sclerosis for almost thirty years, and he handled that with so much courage. He'd try any new medication available, and really had no symptoms for the most part. A little weakness in one leg and some issues with one eye. He was a motivational speaker and traveled the country for the National MS Society, encouraging others. He never complained.

The last few weeks of his life were different. He was sleeping more. He was still working from home, but he didn't get out as much. I kept asking him to go to the doctor; maybe the MS was starting to flare. He went, and had a checkup. The doctor said he was doing well, but he had to watch his blood pressure. He had a stroke the next day.

We would meet every day at 2:00 for coffee. We both worked from home, but separately. I make jewelry, so my studio is a big mess. We couldn't share a space. Anyway, I realized it was 2:10 and he hadn't come in with the dog, a muffin to share, and two cups of coffee. I called out for him, and he didn't answer. His office has a glass door and the room was dark, so I assumed he'd gone out for a bit. I looked outside and his car was still there. All of a sudden, I was terrified. I screamed his name, and I heard a muffled sound coming from the dark office. I found him on the floor with the cell phone beside him, lying between the desk and chair. He asked me to help him up; he thought it was the MS. I was calling 911 as he spoke. I knew he'd had a stroke, even though MS can mimic stroke symptoms sometimes.

I can't remember him before that. That image of him is frozen in my head. After 22 years of jokes and laughing and talking and fighting and loving, all I can remember is that awful slurred speech as he told me he was okay.

He died 13 horrible days later. I keep wondering if I'd gone to his office earlier, if I could have helped him. I don't know how long he'd been on the floor. It could have been minutes, it could have been hours.

I want to remember him happy and laughing. People who've been through this tell me I will in time. It's only been seven months. "Only". It's been forever in my mind. 

I just wish us all peace from this horrible suffering, and I'm so grateful that we have each other to talk to.

I hope I didn't ramble too much. I've never told this story before, because it just hurts so much.

Comment by riet on May 28, 2018 at 4:22am

Thank you both Susan and Bergen.  Thank you very much. Talking and being understood helps so much.

Comment by booktime (Susan) on May 28, 2018 at 3:02am

And I totally agree with what Bergen just wrote about doing what we thought was right and best at the time! We are not blessed with the vision of what will happen, only what is happening. So absolutely you did what was right.

Comment by booktime (Susan) on May 28, 2018 at 2:58am

All of this, I have felt! For quite a while after Ed's death, all I could see was that Ed, diminished horribly by the disease, not able to walk or do anything. I can see that Ed still but now I have other memories to comfort me. The best advice I have received on approaching an anniversary or special day or just any day, is think of something he did that made you laugh. This has helped me.

Also, for a while, I did not have pictures of him displayed. I wanted HIM, not just the stupid pictures!

But now I have several in my bedroom: our wedding day, my brother's wedding day, and one taken just a few months before he met me! I tell that Ed oh if you only knew then how your life was going to be with me! Many happy years.

The guilt: oh yes, Easy for someone to say get it out of your head. That's not going to happen. But believe me, that feeling dulls. It really does. I felt a lot after Ed died - why didn't I say or do this or that? Why.

Even though I was with Ed when he died, I almost missed it. I was sleeping in the bed next to him and was awakened at 2 AM by the hospice nurses tending to him and then I heard his breathing, and I knew. He died 4 hours later. Not that I could have stopped it but shouldn't I have been alert? So there's my did I do enough?

Each of us has to travel our own path of grief and there is no doubt in my mind that yours has some pretty big boulders. I want to share with you that mine is strewn with pebbles now. The path can be a little rocky still but it is mostly level.

There's nothing I can say to you that makes your loss less strong now. Only to say this is the right place to find the stories of others and know in that sense you aren't alone.

Hugs. Sounds like a nice bbq. Stories are great and it's really good to be able to talk about him!  I love talking about Ed even now.

Oh and yes, before the cancer, Ed was very healthy. Never never fair.

Comment by NoLongerInBergenJC on May 28, 2018 at 2:55am

@reit:  The hardest part, I find, is forgiving ourselves for simply doing the best we could and making the best decisions we could at the time.  You could not have known that your husband would pass at 5 AM.  You were looking out for your daughter and did not want to wake her.  

We all, especially those of us who dealt with terminal illness or situations, have things we wish we'd done differently.  I have so many things that I've already written about elsewhere here so I won't bore you with them.  But when we are in crisis mode, we can only do what seems right at the time.

I don't have any easy answers for you on how to do this, but it is something we do need to learn how to do, because otherwise it can drive us mad.  The only thing we can do is to keep reminding ourselves that we always did what we thought was right...and it may still be right even though it doesn't seem that way.

 

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