It hurts so bad

[mittam99]

I just can't stop replaying the events of March 6, 2015 in my head. Why did Tammy die?

She had just come home from the rehabilitation place less than 48 hours earlier and we had great hopes for the future. Tammy worked so hard in physical therapy and occupational therapy to get her strength back. She was planning on making lifestyle changes to improve her health.

By that evening she was gone! It all happened so fast and I had no idea Tammy was literally dying at home...

I feel guilty because I didn't know what was happening. She seemed tired and then confused and then she started to get the sweats. All these things were not too unusual because Tammy's Lupus was severe and presented with many terrible symptoms. By the time she said she was having trouble breathing and the ambulance arrived, she was near death. I just can't fathom how all this happened on that dreadful day.

I was supposed to be Tammy's knight in shining armor and her protector.

It hurts so bad. In a way, I feel like I failed her.

 

[Gin]

Mitch,  

I always feel like I failed Al, also.  He had so many problems and I thought we were dealing with it all.  I kept telling the doctors about all his symptoms, but nothing was working.  His feet, legs, thighs swelled and he went to the hospital to get IV diuretics.  The swelling went down and I thought he was better.  A few days later he died.  He lost his vision the last few months and was so dependent on me.  I keep thinking I let him down.  We have to believe that we did our best.  We would have given anything to help them and I am sure that Tammy and Al knew that.  It is so very hard.

[hollowheart]

Mitch, I'm so sorry. I feel your heartbreak right through the computer. When you said Tammy was going to make lifestyle changes my eyes welled up. My sister was on the same track. It's horrible that they were both thinking about the future and how they were going to get healthy and this happened. I H A T E it!!!!

I have been having a hard week, I can't believe I'm actually ready to see my counselor. Like you, I keep replaying events and thinking about the last things we did together and I just want to rewind back to those days so bad. I can't believe in an instant I'm an only child now. It's unfathomable.

Gin, I still feel like I let my sister down. People may say "you tried" but I really didn't because I could have called an ambulance. It's hard knowing I really didn't "do everything I could". I could have done so much. I failed her too.

[kayc]

No more than any of us did, Mitch.  George had symptoms of heart problems, he'd talked with his doctor, the doctor didn't point him to a cardiologist, George and I just thought it was his Diabetes or something, we were puzzled.  We should have known but we didn't, when the doctors don't catch on, how can we be expected to?  I remember feeling just as you did, Mitch, but it didn't change anything, it didn't bring him back, there were no do-overs.  It's a hard thing to live with, and yet I've had to, and I've had to accept my ignorance, or whatever letting him down there was.  Try not to beat yourself up, at the end of the day, you're bloodied inside and she's still not here.

[Margm]

Well, I guess that is one thing we all feel, we feel that we let our mate down.  I have to get the last moments out of my. head or grief will certainly turn into a certifiable mental breakdown.  His telling me "the one that is left must stay" feels like a life sentence in solitary confinement.  

[Guest Janka]

I think it´s not any fault of us. How can you think of something like that at all? We are just those who love them above all. The others let them down,not ourselves. Please,remember that !

Love you all !

Hugs from Janka

 

 

[hollowheart]

TH, you're so right. On good days I can get to that thinking. It's such a horrible permanent thing to grapple with. I think me not believing the worst would happen lulled me into doing what I did and that I had time to make other choices or figure things out later.  I would say "better safe than sorry" all the time and didn't do that. I'm so sorry I didn't. 

I'm trying to remember we did not intend to hurt our loved ones. That is what matters. 

[iheartm]

I am crying reading this post. My husband has asthma that was controlled for a long time. Every time the winter came on, he had to adjust to the new cooler weather. We were sure his shortness of breath was that. He went to the ER, they took a chest xray and blood, told him he was fine, gave him a prescription and sent him home. A few days later when he wasn't feeling much better, I went out and bought a humidifier, Gatorade and soup. A few days after that I had to call 911 and an xray in the new ER showed pneumonia all over both lungs. Why did the other place tell him he was okay? Why the HELL did I buy a damn humidifier and Gatorade? Why didn't I realize this was more serious than we thought and go to another ER sooner? I never got to say goodbye. I am broken.

I wish all the broken people here peace. I don't know where the road goes from here since I just got on it but at least we have each other to talk to and everyone here understands in a real way what we are going through because they are too. I have such a great group of supportive friends but I cannot articulate what this feels like. Here, I don't need to because everyone gives a virtual nod to every message here because we just know. 

Hang in there. 

[kayc]

You bought gatorade and a humidifier and soup because you were lovingly trying to help him.  If anyone is to blame it is the hospital that told him he was fine and sent him home.  I don't know why they missed it.  Why did the doctor miss my husband's heart condition when he was complaining of shortness of breath, tightness, etc.  He should have been sent to a cardiologist, but he was sent home.  And he died.  It happens every day, same story, different details, other hearts broken.  The truth is, even our medical care is broken, they are human, they make mistakes, they don't take us seriously, it's not their lives changed forever!  It's yours and mine.

I didn't get to say goodbye either, and I regret that, but I'm not sure it'd make any real difference in the end, because we'd still be apart.

Yes, you're right, here, we just know.  We all live it.

[Cookie]

I also relate to this conversation by all of you.  My husband had cancer we thought he was over and was re-diagnosed 2 months before he died, but we thought we could still beat it.  Now, I wonder if I should have tried to talk to him about the reality of him dying, but I was too busy trying to support his quest to live and my own selfish desire to keep him here, so we never got to that conversation.  He died unexpectedly (for me) one night and now we'll never have that conversation and it haunts me still.....

[MartyT]

This is an article by our beloved Darcie Sims, dealing with this matter of saying goodbye. I found it very comforting, and I hope you will, too: Goodbye to Goodbye  ♥

[hollowheart]

Cookie, kay and iheartm, I am the exact same way. My sister kept saying her mouth was dry, her mouth was so dry and she went crazy trying to drink anything in sight. I didn't even think about the fact she was only supposed to have so much liquid with her heart condition. We walked to the store and she bought tons of drinks, I think she was just so out of it wanting something to satisfy her thirst and neither of us decided to go to the emergency room, even though I did ask if she wanted to call her doctor. Her mouth had even drooped at one point, but that stopped. She mostly likely had a stroke.

And we walked to the store instead (!??!?!?)

I looked at her laying in the bed unable to talk and still waited until the morning to decide on the hospital. Of course that was to late. How stupid is that? That will haunt me forever too.

[kayc]

HH, I didn't realize she had CHF, my friend Jim has that.  Yes they're limited in amount to drink.  Sucking ice cubes might have helped quench her thirst without the added liquid, but hindsight is always easier.  I understand your regret, I just hope you can be kind to yourself while you're at it.

[mittam99]

I am so angry at the medical profession and insurance companies. Tammy had severe systemic Lupus, Sjogren's and Raynaud's. So few physicians, especially at the hospital level understand how to treat these patients. A doctor once told Tammy she was the most complicated patient he ever had seen.

When Tammy was in the hospital that last time, she was rushed there because she had collapsed at home. The doctor's assumed it was her heart. The emergency room doctor tried putting in a central line but failed on several occasions and finally was able to get one in. As it turned out, Tammy's heart was ok. But... in the process of botching those attempted central lines they caused a couple of blood clots in Tammy's legs. When I first saw her afterwards it looked like someone had beaten her up.

During that hospital stay, I saw so many levels of incompetence from the staff there. And I was there 24/7 throughout Tammy's stay. I took off of work. Yes, money is important but Tammy was much more important to me. When the time came for her rehab assignment, we were limited by insurance to where she could be admitted. The place she wound up going to had a wonderful physical therapy dept., but the staff there and the "cleanliness" of the place left a lot to be desired. Matter of fact, the entire floor Tammy was on got a severe intestinal bug ... and since I was there as often as I could, I also got sick. The night Tammy was transferred it was icy outside and travel was difficult. The head nurse would not allow me to stay the night... said it was against policy. So, there was Tammy crying because the wouldn't let me stay and she was worried about my safety driving home. I argued my point to the nurse but ultimately I had to go home. I told Tammy it would all be ok. 

Tammy was sent home from rehab on a very cold and stormy Wednesday night, She couldn't make it all the way up the steps to the bedroom and the ambulance guys carried her to bed. The next day we had about 10 inches of snow and I was unable to get her newly prescribed meds. Friday morning I got up super early to dig out from the snow and I was the first one in line when the pharmacy opened to get Tammy's meds. As, I always did before leaving the house I asked Tammy if she would be ok, while I was gone. She said "yes". .

That was Friday March 6th 2015. I bought a corned beef (one of Tammy's favorite foods) and was making a special meal to put a smile on her face. I was setting up some exercise equipment for Tammy to use to continue to build up her strength. She woke up and we watched some TV... The Price is Right and The Young and the Restless. Then, Tammy needed to roll over and get some sleep. Nothing unusual there because Lupus and fatigue go hand and hand. A bit later I was talking to Tammy and she seemed a bit confused. I wondered if it was the new narcotic pain pill she was prescribed. I was worried, so I called my brother-in-law (a physician), and asked it that medication could cause those symptom and he said yes. I was relieved.

Overall, Tammy just seemed very restless, couldn't get comfortable. She wasn't really complaining about anything, symptom-wise though. I went back to work on the exercise equipment for a bit... when I came back to the bedroom, Tammy was sitting on the edge of the bed and then just felt back. Almost in slow motion. I ran to her and she wasn't responding. I called her name, louder and louder... and then she opened her eyes and just said how tired she was.

I was again relieved but worried. What just happened??? I couldn't fathom that she could be getting seriously ill again. She just was sent home from the rehab place.

Then she was having trouble breathing. I called 911. And... I got a busy signal. How crazy is that? I finally got someone on the other end and in the middle of talking to them,  Tammy told me that she was ok. (on hindsight, I think she just had caught her breath for a moment). She told me she was sorry to have "scared me".  Again, I was relieved but now was staying with Tammy in the room and monitoring things. All of the sudden, she seemed sweaty and clammy. My first thought? "Oh my God", these are the same symptoms of the sepsis Tammy had a while back. Then, Tammy was again having trouble breathing and I called 911 again. and again it was busy. (the storm had apparently caused an abundance of 911 emergency calls). The EMT crew arrived in less than 10 minutes. Tammy was put in the ambulance.

I ran outside and asked for updates. No one was telling me anything. One of the guys out there just said "our people are just doing what they do". Huh? I had to find out what was going on, so I got on my tippy toes and looked in the ambulance window and was horrified. Tammy was laying there motionless and the guy was pounding his fist into Tammy's chest. All I could think of was "PLEASE DON"T HURT HER!!!!!!!!!!!!!!!!!!!!!!!!!!!". Why didn't they have paddles on this truck? I realize her was trying to save Tammy's life but this just seemed so brutal.

Shaking, I drove my car to the hospital. They had taken Tammy to the trauma room in an effort to revive her. They couldn't. And my beautiful and perfect wife Tammy was gone. I stayed with her for many hours. I could not leave that room. Finally they basically "threw me out" because that was the only trauma room they had. But this was my wife, the woman I love, the person that made my life complete and made me happy. I just couldn't say goodbye.

I'm still traumatized by what happened on that day. Tammy was just 45 years old. She had a zest for life. A magical smile and a sweet and gentle spirit.

I feel so lost without her. Our life wasn't always easy. When Tammy's health started to deteriorate in 2007 it became one medical struggle after another. Money was tight after Tammy lost her job. But the thing was, we had each other and we had a love for the ages. 

Yes it hurts... it's a hurt like no other.

 

 

[Gin]

Marty,

my husband had been sick for a long time, but I still did not realize he would die so soon.  One of the last thing he told me was, "It is so hard to say goodbye".  I do not remember what I said, but I know it was not Goodbye.  I always felt bad that I did not, but after reading this article, I believe that I probably would not have under any circumstances.  I held his hand for many hours and told him how great he was and how much I loved him.  That was better.

Gin

[enna]

I loved Darcie. She was so filled with wisdom and was so upbeat. I miss her presence on this earth. Many of her writings can still be accessed online. 

I liked Darcie's article: Good-bye to Good-bye. 

[MartyT]

I loved her, too, dear Anne ~ and I had the great pleasure of telling her so in person, when she was at a M.I.S.S. conference in Phoenix some years ago. She has a special place in Heaven ~ that's for sure  ♥

[MartyT]

I'm so glad you read the article, Gin ~ and I'm sure there were many "I love you's" exchanged between you and your beloved, both in your words and in your actions  ♥  

[kayc]

Mitch, I remember your story so well, it brought back memories of them working on George trying to restart his heart, his chest looked like they beat up on him, but all for naught.  It is a terrible memory, isn't it.  It seems they really let your wife down...and you with her.  I'm so sorry, I know it's haunting.

[mittam99]

The last words I heard Tammy speak were "help me... help me..." and then they put an oxygen mask on her. I felt so utterly helpless.

I'm crying just typing this... the pain of knowing I couldn't help Tammy at that point makes me sick to my stomach and breaks my heart.

[iPraiseHim]

Everyone story is so heart wrenching yet it is the violent truth when death takes our beloved.  I have been haunted by the "what if's " and "If only".  The reality is that no matter what I think, try, or imagine, I can not change the reality of the situation. I was haunted by the fact that I wasn't there to help my wife when she was in distress.  There were three other times that I was there and able to revive her. 

On April 18th, 2015, my wire, Rose Anne, had a Fistula operation to make a new pathway to delivery a larger volume of blood for Dialysis.  She had a nerve block on her left arm and some heavy medication.. She slept in the living room in a LayzBoy Chair.  I was back in the study and went to go check on my wife and give her a kiss before I went to sleep. I found her slumped forward in the chair, blue tongue protruding,  and blue lips,  I called to her, opened her mouth, moved her tongue and slapped her hard to wake her up.  She never even new she was out. 

I fought with the doctors for the next month to get oxygen for her.  I bought a PulseOz and found out her oxygen levels were dropping to 50%.  I checked on her continually, and had a meltdown one day in sheer frustration that I couldn't get her an appointment with a Pulmonary doctor for over a month.  Then when we finally go to the doctor, they diagnose she has severe low oxygen yet we leave the office with no Oxygen.  It took FIVE days to get it approved by the Insurance company.  They couldn't deliver the machine so I actually went out and picked up the Home oxygen concentrator and the six Oxygen bottles.

There was a humidifier unit that added humidity to the oxygen to help breath. Every two-three days I would clean, sanitize, and refilled the humidifier and reattach. Instead of the company replace that hose connector the protocol was to just use the same one.  On two separate occasions, the hose popped off and my wife couldn't breath.  I was home and she called out to me and I was able to save her.

The day my wife died I had just changed and cleaned the humidifier that morning.  I made sure it was secure and snug.  I also checked to make sure she had a good portable tank of oxygen for backup.  She was also having  severe low blood pressure issues when she stood up to go to the bathroom ( 100/60) which made her weak. She couldn't see well, (blind in one eye, cataracts in the other) and I don't know if she had bumped the hose off accidentally trying to raising the oxygen level or if it just popped off. 

She would usually call between 9-10 am to let me know she was going to sleep ( strange sleep patterns) but I got no call that day.  I didn't think it unusual.  I just thought she was resting.  It was unusual that she didn't call by the afternoon though.

When I found her lifeless body,  she had switched over to the portable oxygen tank.  if she had the strength, she knew to call and tell me she switched to the portable tank because the home unit malfunctioned.  She had her "headlight" on (a light that goes around the forehead to help her see)  and the pulseOz on her finger.  The oxygen tank was out of oxygen and the pulse Oz was flat lined.  It was the most helpless shocked  feeling I have every experienced.  I immediately called 911 but I knew she was gone.  It was all beyond my control. I still miss her every day, every moment. Despite the pain, I am grateful, that I didn't die first, because it would have been much worse for her to live after my death.  My wife would have stopped dialysis.  Not called anyone.  She was tired and so very weak. 

I too have anger towards the traditional (allopathic) doctors.  The traditional doctors are trained to cut, prescribe, radiate, manage. They manage Type 2 Diabetes.  The problem is their management of the diabetes makes it worse because it actually causes an insulin-resistance Diabetic to become MORE insulin resistant through their pharmacological protocol. Naturopathic doctors go to the same medical classes and certification as the traditional doctors.  The main difference is the Naturopathic doctors find out what is causing the disease/ problem and then look for natural ways to heal and restore the bodies healing system. 

I was diagnosed with Low thyroid function.  The allopathic doctor prescribed a medicine that actually destroys the thyroid so you have to be on the medicine for the rest of your life!.  I chose a simple, natural, and more effective alternative that is helping to restore thyroid function. 

Sorry for the long rant.  This subject struck a nerve.  Thanks for letting me vent.  Shalom.

[enna]

This really is about any grief but when Darcie Sims gave this talk it was about the loss of a child, grandchild, or any child. It means more to me today than when I first listened to it. Our grief changes. I still use toilet paper. 

 

[iPraiseHim]

WOW! Phenomenal.  Thank you, Enna,  for sharing this video.  It will help me to deal with this grief, loss and love. My heart is blessed and filled with my wife, Rose Anne's love.  I appreciate our group here even more.  I can choice love and remember the good times for there are many. Shalom 

[Guest Janka]

On ‎13‎.‎2‎.‎2016 at 1:25 AM, mittam99 said:

The last words I heard Tammy speak were "help me... help me..." and then they put an oxygen mask on her. I felt so utterly helpless.

I'm crying just typing this... the pain of knowing I couldn't help Tammy at that point makes me sick to my stomach and breaks my heart.

Dear Mitch,

I have to reply,reading your post as I could write a book about the doctors here.My beloved man Jan wasn´t ailing or old,and yet he died.It were the doctors who killed him.I saw him at 7 in the morning,being in his arms,kissing each other and saying how much we love each other until he went to work.We were the happiest in the world till then and the same day at 1 in the night he was dead that made me the most unfortunate in the world till now.Just imagine!My most beautiful,the best and only one man,the love of my life,my everything were gone and he could be alive now.This is the hardest wound of my whole life!I understand you.

I´m very sorry for your loss!

Janka

[Cookie]

Hollowheart:  It wasn't stupid.  It was just disbelief....When you are faced with the possible death of someone, I have found myself that nothing in your brain works rationally.  I didn't try to talk to my husband about his impending death, preferring to deny it instead, which I think was probably normal.  It's just so darn sad and we are left with the pain of thinking we could have done something when in truth we couldn't.....hugs, Cookie