The "If-only-I'd-known"s

[DJCCHV]

I'm sure there must be others of you who are dealing with this. It seems like every day I read something or learn something that would have helped in dealing with my husband prior to his death in March, or that even might have prevented his dieing. He was sun-downing. Time and again I asked him to describe what I was observing to his doctor, but I didn't insist. He didn't want me to talk to them myself.The first evening which I now recognize as that happened at least 3 years ago. But no one ever mentioned this phenomena to either of us as far as I know.I came upon it by chance after he died. It seems like I have tons of those. Do you? How do you handle them? I feel guilty and angry and I want a second chance. I feel like I've learned so much, and what good does it do me! It only makes me hurt more, feel worse!

[ModKonnie]

I know it's easier said than done, but you shouldn't feel guilty about something you never knew existed. Perhaps your husband did not want you to worry, if he knew about the phenomenon.

The "what-ifs" and "if onlys" will really tear a person up emotionally. How do you feel knowing about this could have helped prevent his passing?

Losing someone is just so painful, but honestly, time does help. I know that's not a comfort at this point, but we are here for you.

ModKonnie

[stargazer5510]

My husband was having symptoms and difficulty at work, but would not go see the doctor. At first, I was overwhelmed with what I could have done immediately at his death and tormented, but I talked with my doctor about his last moments and he calmed me about that. But over time, I have identified moments where maybe I could've said or done just the right thing.

Ultimately, we all have an expiration date, and I've come to accept that. Still mad he broke his promise to let me go first.

[blueheaven]

Sometimes when people "sundown" or are intermittently "confused" can (and often do) hide this from their loved ones. Sometimes they remember sundowning but it's like they can't control it. It's just a fact. I've seen this a lot over the years as a nurse.

I have tons of "shoulda, coulda, wouldas" in dealing with my husband's death. While I know in my head that there was nothing more that could be done, it's taking my heart and soul time to grasp it.

Nothing would have saved my husband but a transplant. Even then, there would have been no promises he would survive the surgery. We did everything that should have been done. We did every test, every ultrasound, every MRI, every CT, even a biopsy that according to "best medical practice" stated that needed to be done to monitor for liver cancer. When the cancer finally showed it's ugly self, he was outside of criteria for a transplant. We tried to get him within criteria and that didn't work either.

There were times over the past 2.5 years that I told my coworkers that sometimes ignorance is truly bliss. I know more about liver cancer and advanced liver disease than many of the doctors that I work with. Did all that knowledge help? No. I'm still here and stuggling with the loss of my best friend like everyone else is.

What I am saying, by saying all that is...just because you know...is not any assurance that things would have been different. Knowledge doesn't make it any easier.

Taking it a day at a time

[DJCCHV]

Thanks, ModKonnie, if that were the only one, it would be bad enough, but I have tons of these. My husband developed bipolar while we were in England due to a trauma that brought up something in his past that he had worked very very hard to put behind him. Would he still be OK if we hadn't gone to England? He'd managed to make it to 50 well enough, amazingly well considering the things he experienced in his youth.

Then there are the two hip replacements he went through last year. He was amazingly brave. He had a history of addiction, but had many years of sobriety when I met him. Then he broke an ankle and had to struggle to get back from the necessary use of pain pills during that recovery. So he knew that each hip replacement was likely to make it necessary for him to do that one more time. And he did struggle through them and was doing well, so well that we had great plans for the coming summer. Then he openned the back door to throw out some trash one day, the cat dashed out and headed for the alley, he dashed after the cat and tripped over a tree root and broke his foot badly. All these on top of dealing with bipolar. That last enforced six weeks off his feet was really working on his last nerve, and of course there was yet another round of pain killers to deal with as well. He was 3 weeks into the 6 when he died.

With having to manage to support us, finding a job in a new place, dealing with him and his bipolar moods, I was having a hard time of it, though our relationship was always very strong and positive. But he used to ask me to read the Big Book of AA, to study up more on bipolar to understand what he was dealing with. I felt like I already had as heavy a load as I could carry, but this is SO much heavier. I never got around to these things. I've had the time to follow up on these things since he died and feel like I could have been so much more helpful and supportive.

And then there's the day of his death. I had gone to work. I HAD to work. Or at least I thought so. I had just taken another job that was much better and paid more. To deal with the pain pills, I had control of them. I would hide the dose he was due while I was gone and would call him when it was time and tell him where it was. I called. He didn't answer and didn't call me back. I knew he had Meals on Wheels bringing his lunch to him and a doctor's appointment that early afternoon that folks were coming to take him to. I didn't worry. He had orders always to keep his phone on him, but he didn't always remember to transfer it when he changed clothes. I figured he was getting ready for them, and there was really no need for him to call me back anyhow. Then Meals-on-Wheels called and said they had tried to deliver his meal but found the door locked and got no answer. We always left the door open for them, so I assumed the folks must have come early to take him to the appointment or the door would not be locked. I STILL didn't worry! Then the folks who were to take him to the appointment called and said they'd found the door open or at least not locked (I forget) and had gone in and found him collapsed and were performing CPR on him. I left work immediately, then, of course, but I got home too late. He was dead. He died, and I wasn't there. I've gotten so many stories I know some of them were told me just to ease my mind. One rescue squad member said they found him just sitting in his chair. But I'd already been told that the found him collapsed. I'd asked about the phone and was told it was under him. I found it on the floor in the living room and I found the pills for the dose I called about lying loose about the room as if he'd had some kind of attack that had caught him as he had them in his hand.

They did an autopsy, at my request, expecting to find that he'd had a heart attack, but they didn't find any evidence of that. His doctor told me that he thought the cause of death was a sudden arrythmia, and that such things came on all of a sudden, and the only hope when such things happened was to treat within two minutes or it was irreversible. There must be at least 10 Why-didn't-I's, What-if-I's, How-could-I-not's, and as many regrets and self recriminations attached to that. I can't remember how our morning went before I went to work, whether I was in a hurry to catch the bus and left without a kiss, whether I treated him kindly or impatiently. Try as I might I can't remember, though I remember coming to a point the day before when I felt like I had a handle on the present situation and was calm and knew how to find my equilibrium and understanding when he got edgy and demanding. I think I may have lost that in the morning and not had time to get back to it before I left. Did I add that one last bit of stress that was too much for him?

All the things I've read since on any of his problems that could have been helpful if he were still alive. Should I have been more assertive about talking to his doctors myself? He already felt bad enough about not supporting us other than his disability payments and he always wanted to do as much as he could for himself and for the household. He didnt want to feel as if he'd become a burden. Did I make him feel that way? It goes on and on and on.

I think I've pushed all this out of my mind for the last seven months as just too painful to deal with when I already had so many other painful things landing on me. Folks calling for him. Folks asking after him everywhere I went, it seemed, and having to tell the story over and over and have them tell me what a delight he had been to deal with. Folks tell me I'm doing amazingly well. I even feel guilty about that. I feel guilty that his survivor benefits added to my earnings make me better off than we were together. I can afford things WE couldn't afford to do, but what good is that without him to share them with? Maybe it's a sign that I am doing well that these things are now rising all at once to torture me as if now, I can take it.

Sorry all this just came pouring out of me. I've cried more in the last week than in the month before that, I think.

[Silvergirl61]

I have been torturing myself with the same type of 'If only I had known this' or 'done that' thing, every since my husband, Dennis, died on August 26th.

Like you, I have been trying to keep up with everything for the last eight years. Like you, I am also remembering every time I was impatient, every time I was tired..and none of it will do either of us any good. The hard truth is- we can't go back, we can't change what happened...but oh, how I wish we could!

My husband had PTSD, and MDD,(he was a combat vet) plus a terrible family history of heart trouble. He had a very large stent put in his main coronary artery in 2003. His health got gradually worse, and in 2004, his employer let him go. It hurt his pride, terribly, for me to become the breadwinner. In 2009, a week before Christmas, he attempted to take his own life, but I walked in, in time to stop him. While struggling to take his weapon away, I was injured- and he nearly ended my life, by choking me. I broke free, called 911, and -

He spent over a month in a facility, where he fully intended to stay for the rest of his life...because his greatest fear, up until then, had been that he would someday "lose it" and hurt his family. He refused to see me for the first ten days, then he told me to divorce him and leave him there.

On February 2, 2010, I had managed to get a small rental house, in a sleepy little town, where he would feel safe, and he agreed to return home, on a trial basis, to see if "it would work out". He made some big changes- went through therapy, stopped almost all his alcohol intake (no , he wasn't perfect, but I never saw him drunk after that)and took medication for depression, on top of all the other meds he had to take, to control his blood pressure, and to regulate his heartbeat.He stuck to a good diet, and tried to get exercise, when the pain in his legs and back would allow it. He went through physical therapy to learn a better way to exercise without straining ..and we monitored his blood pressure, every day. His cholesterol was great, his blood pressure was 124/70 only an hour and 10 minutes before his heart just stopped. He was walking toward me, and talking..and then he fell. I was there to catch him on the way down..and I tried CPR, and called 911...but it didn't work. By the time they were able to shock his heart into a rhythym again..it was too late, and he died about 40 hours later.

I have talked to seven different doctors..they all have told me that there was absolutuely nothing else that I could have done that would have saved him. I have been told that 95% of patients who have a sudden and complete failure of the heart like that, die, even if they are in hospital.

Today, the doctor I spoke to took my hand, and gently asked me, if I had ever considered it from this point of view...

" If you hadn't walked in two hours early from work back in 2009, what would have happened that night? Try this for me..try looking at it from the perspective of 'I had those extra, precious days with him' , instead of looking at it as 'I failed to save him this time' , and see if it helps you, just a little"

And you know , I think it might. Time will tell, won't it? If I look on the days that i had with him, as a gift...and stop looking at losing him, as a curse- I may be able to get through this terrible time.

I don't know if sharing all this was the right thing to do. I don't know , if those words will help any of you, that are reading this. I hope it will help- someone.

My Dennis was an organ donor. I got a letter from the foundation, telling me that he helped to save sight for two people, and through his gift, would possibly be able to help as many as 60 more, many of them young soldiers who have been injured, and might otherwise lose a limb, or the use of a limb, due to injuries they received. Will it give a better quality of life, to a young husband or father? I hope so. He would have liked knowing that.

Am I coming to terms with this loss? Now and then, but it doesn't last. I just keep trying, just like the rest of you are trying, to make sense out of something so traumatic, and so tragic.

Keep coming here, and keep reaching out. There is nearly always a hand, reaching back. We'll get through this, if we help each other. I really think we will.

[DJCCHV]

It dies help to hear other people's stories. I even have a similar positive what if. If we hadn't been in England, rather than in the US when Steve had the breakdown that led to his being diagnosed as bipolar, we would have gone bankrupt in short order trying to get him anything close to the care he got for FREE in the UK. He was in the hospital for a week, regressed so far back that the best way I found to relate to him (Ifound him huddled in a corner with the blanket over his head.) was to pull the blanket off him and then hand it back as if he was a 2-year-old. That, and only that at first, would make him smile. But even in the worst of it, he kept asking for me over and over. He loved me so. There was no cost for that week, nor for medical people who came every day to our home for at least a month afterwards, then slowly at lesser intervals as he got better. I couldn't have gone back to work without that. What if there had not been the park at the bottom of the hill with the river and swans and other water birds to interact with?

I'll send more later. Just a quick break from work.

D

[paulaj]

I'm still dealing with this five years later. My husband had a rare congenital disease of the bile ducts that went undiagnosed. To confuse matters worse he was in fairly good physical shape. His personality change was so profound, I found myself running away from him, between running to the best psychiatrists around. I still wonder why we didn't get a second medical opinion. When he finally turned bright yellow and was admitted to the hospital, he eventually died from complications of surgery. It was a horrible death.

Intellectually, I know I couldn't have known. But, emotions don't have to be rational. It's not as bad as it was at first, but I have my moments.

Mandala

[Deesgirl]

Thanks for sharing your story Silvergirl61. Your words ("If I look on the days that i had with him, as a gift...and stop looking at losing him, as a curse- I may be able to get through this terrible time") brought me comfort tonight.

[stargazer5510]

Thank you, Silvergirl. Your story is so deeply touching. My husband was a sailor, too. Our nickname for each other was "bunkie".

((((((((((hugs to you))))))))))

[lawnranger]

I also thank you silvergirl for sharing. I had the what if's and if only i'd done this or that. I still miss my wife and love her more than ever. She passed 8.27.12. On 9.17 I ended my addition to pain pills.Even thought I really didn't need them. I feel that she was watching over me. The care I had given her over 5 years of different illnesses she returned to me the power to beat the addition. It could have ended my life if it went on. I'm learning to remember the good times and movies we'd watch together. I could always make her laugh when she was down. When she passed I blamed myself. I always told her I'll get you to the hospital and get you better. But the last time I could not get her better. I fact I had her life support turned off. My guild was hell. But I've come to realize there was nothing anyone could do. Now she's my angel in heaven. My emotions still go from good to really back. But it will get better. I'm so glad we had 34 or so year of friendship 17 of those we were married. I could not ever be sad about that. One thing I've learned, Love means nothing unless you give it away,, it will always come back to you. Together we can help eachother like you said. There's lots of love here...........Steve