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feeling tremendous guilt


Lotsofchats

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Lotsofchats

My mom passed away at the hospital on March 20. She was 81. She was diagnosed as having congestive heart failure a few years ago. Had been on Warfarin since she was 65 after she had a hysterectomy and they told her they found a blood clot. Also was on Amiodarone for a while and Lasix for bad leg swelling. In May of 2014 she had some kind of stroke, but not the noticeable kind where you become paralyzed on one side of your body. We were coming home from a doctor visit. By this time in her life she had a lot of difficulty walking so I bought one of those thin transport wheelchairs to get her from car to office, etc. Everything that visit was normal. No problems getting to visit and back into car to go home. But when I got into garage and came over to other side of car to help her out, her eyes had a glassy look to them and she was holding on to her seat belt, refusing to move. She said she was going to fall. This went on for 45 minutes. I finally managed to ease her onto her knees on the garage floor, but she started to flail her arms and lean backwards, yelling for me to hold her. I couldn't get her up because she was too heavy so I called 911. She became bedbound from then on. Hospital never told me actual diagnosis. Recently her home nurse practitioner finally explained to me what he thought happened based on my description of the event. He said she probably had a stroke in the part of the brain that orients us to our surroundings. She developed bilateral foot drop so her feet were permanently pointed like a ballerina. After discharge from hospital she went to rehab facility and they tried their best to give her therapy to walk, but she would sag between the walking bars, even with one of the therapists supporting her around her waist with one of those belts. She eventually came home and with the help of Medicaid we got a hospital bed with air mattress and rolling table for her meals. We also got caretakers to come to the house to help her get changed. She had to use diapers as she couldn't get to the bathroom. She developed pressure sores but according to home nurse who visited once a week they were mild, no skin breakage. In October of 2015 she developed blue lips and fingers one night. She also had two short "attacks" where she shook her hands and head. I can only describe it as looking like she was being electrocuted. They lasted about 10 seconds each and during them she didn't respond to me, only after they were done. I called 911 and at the hospital they said her heart rate was very low, like around low 40s. They suggested a pacemaker and the surgery was successful. Her heart stayed at a steady 60 beats per minute and she went home. I thought she was good to go but in February 2016 developed blue lips and fingers again, although no shaking of head like before. Back to the hospital. They did one of those procedures where they sent a probe through the arteries with some dye to look for blockage. Her arteries were nice and clear but one of her heart valves was very tight and had calcification. It wouldn't open completely they said. There were two things that could be done. Open up the valve with a balloon, but cardiologist said she would have to go to California or Arizona for it as they didn't do that type of procedure in Nevada, which I thought was very strange. Other option was traditional open-heart surgery, which they said she was not a candidate for because of her age and health. She said no herself to the procedure. She was to be treated for her condition "medically" through continued use of Warfarin and Lasix. She had to stay in hospital for a couple of more days because her urine had blood in it. They did ultrasound of kidneys to try to find out why but saw nothing. Back home after close to 3 weeks in hospital. Fast forward one month. She stops having an appetite around March 13 and doesn't even request soda anymore, which she used to crave. Develops a continuous cough like she is trying to catch her breath. Lasts for two days. I had a cold myself so I thought I might have gave her something. Called for nurse practitioner and he stops by on Tuesday to see her. Listens to her chest and says lungs sound clear as a bell but orders mobile unit to come out for chest x-ray to be on safe side. Asks her how she feels and if she is hungry. She says no. On his way out he gently tells me he thinks based on her loss of appetite that her time might be starting. Next day is Wednesday and nurse comes out for weekly checkup. I tell her what nurse practitioner said but tests my mom's oxygen with one of those fingertip monitors and it was around 92%. She suggests I get her to hospital to be on safe side so mom is admitted on Wednesday late morning. They claim her blood is extremely thin, in the region of 8 when normal is between 2 and 3. I said impossible, nurse did fingerprick test that morning (because mom is on Warfarin) and she said it was around 2.8. Hospital also said her blood volume was low, like she was bleeding internally. They did CAT scan of stomach but found nothing. They asked for permission to give blood transfusion (plasma) and mom's weakness goes away for a few hours. At beginning of hospital stay she was so weak she couldn't even talk. Now I can hear her voice again but she is confused about time of day and day of week. She was showing signs of dementia last few months. Long term memory was perfect but would ask me same question multiple times or forget that we just talked on phone and call me all upset that I didn't call her. Starts to become weak again and hospital says her volume is going down again. She will need more plasma. Now it is Saturday morning and mom is having trouble staying awake. I tell her I have to go to work. She says ok be careful when you drive (she always was a worrier) but her voice is very weak. Saturday night I go see her after work and she is asleep. Nurse says what do I want them to do if she crashes in the night. I say DNR, no intubation, no CPR, no rib-cracking. I'm thinking she is beginning to go because they seem to have no answers or solutions to her weakness. Also forgot to add that since she had catheter for urine to collect they could see color and they said earlier it was the color of milk. Bad infection? Nurse said she could put in order with doc to take "comfort" measures only and did I understand what that meant? No more antibiotics in drip, no more transfusions, just morphine in controlled timed doses. I said yes. They started her on lowest dose of morphine. As night went on I couldn't wake her. I wanted to say a few last words to her. I fell asleep in chair beside her for a few hours but woke up around 3 am. Soon after I noticed her blood pressure was slowly dropping, as well as her oxygen percentage. Her heart rate was kind of erratic now, not the normal 60s she had with the pacemaker at home. It would swing up and down in a range of 10 to 15 points. A couple of hours pass and blood pressure and oxygen keep falling. I now realize I am watching my mother die before my eyes. Oxygen got into 40s and blood pressure around 70/40 I think. Can't remember because I was crying too much. Heart rate had stabilized at 60 again but nurse said the more white spikes I see on monitor, the more the pacemaker is working instead of her actual heart. That is why she never really flat lined. Around 8:30 am she takes a couple of deep gasps. I call for nurse and she checks with stethoscope. She says she is gone. I tell you all this because I am starting to come to the realization that I had my own mother put down like an animal. I agreed to dope her up on morphine and because she was already on the frail side even on the lowest dose it must have been too much for her. I think it was less than 24 hours from time I authorized the "comfort measures" to time of death. My head is swirling so I went to hospital today to order copy of last two stays to get timeline correct in my head again. If it confirms what I think it does, then that makes me a murderer.

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Lotsofchats

I am an only child. It was just her and me since my parents got a divorce when I was 18. My dad was an alcoholic and abused her. I encouraged her to get the divorce. So it was just her and me since then. I'm 38 now. They had me late in life. Always lived with her. I know that sounds infantile but that is the way our lives played out. All my aunts, uncles and cousins live in Europe as my parents were immigrants. So yeah I am officially an orphan.

Thank you very much for your kind words. I guess I have no choice but to be patient until her medical records are ready to be picked up in 7 to 10 days. Then I can sit down and get the timeline straight in my head again. I've been trying to relive the scenario over and over in my head so much that my head feels like it is in a fog. Now I'm thinking I should get an autopsy done before she gets cremated, but that is probably very expensive.

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MissionBlue

Hello, Lotsofchats, I am so sorry for the loss of your dear mother.  I can relate so much to your grief and guilt experience, because my father also died of congestive heart failure.  He also had kidney failure, pneumonia of unknown etiology, diabetes, PAD, atrial fibrillation, and more.  He was on Warfarin for a while and other blood thinners until he had to refuse them because he was at a high risk for gastric bleeding.  Xarelto made him cough up blood.  He was also on Lasix for a long time, needing increasingly larger doses over time.  His legs would swell from his blood pressure medication, but they said it was a necessary evil.  Fluid would sometimes accumulate in his digestive tract which was harder to detect, so he had to be weighed every day.   

I also felt like I killed him when I let them put him on a morphine drip, because he lost consciousness very quickly and lapsed into a coma.  His vital signs started to get better after they removed the nasal gastric tube, and I thought the decision to do Comfort Care may have been premature, but the doctors and nurses insisted it was for the best.  They removed the monitors in Comfort Care and so I couldn't see the numbers anymore.  A few times it looked like he was struggling to wake up and that was very painful to see.  But the morphine did help him breathe and to be comfortable, for the most part, or so they tell me.   Like your mom, he also needed open heart surgery which he declined.  He did not have much of a chance of surviving the operation, but mainly he didn't want to have to go back on the ventilator.  He would also have had to be put on dialysis which had a good chance of killing him, because of blood volume fluctuations -- his heart which had already sustained damage from a massive heart attack, might not have withstood it.   They told him his ejection fraction was only 15 percent, but I have read that people have recovered from 13 percent ejection fraction.  I wish I had owned a smartphone so I could have looked up things on the Internet at the hospital.  Recovering from open heart surgery is very painful, so I am glad that he was spared all that suffering.  He hated being in a hospital.  When I see his 91 year old sister going to Las Vegas after having stents put in her valves, I can't help but feel envious, but my dad couldn't tolerate blood thinners the way she apparently can, though she has had some trouble with them, too.  My grandmother died from an internal hemorrhage from Coumadin (Warfarin), even though she was taking regular Pro-Time tests. 

I have read that the Cheyne–Stokes respiration, the abnormal pattern of breathing that is often seen after morphine administration is not as distressing to the patient as it looks.  Most patients die of their disease rather than the morphine.   It was still very traumatic to me to see my father dying before my eyes and being powerless to do anything about it.  But what haunts me the most was that he knew he would die without the operation and I wish so much he could have died thinking he still had a chance to recover.  Fortunately, the morphine relaxed him and he said he was not in pain before he lost consciousness.  He even made a joke that his favorite nurse was going to get tired of caring for him.  This was the nurse who had saved his life once before during a previous hospitalization.  He had come down to say hello to my dad a few days before.  I wish so much that that nurse could have taken care of my father.  Maybe my dad would still be alive, but like Eve said, I think it was his time. 

I also suffered from bronchitis at the same time my dad suffered from pneumonia of unknown etiology, which I'm almost sure we caught from my niece.  I felt so bad that I was not in my normal good health the last month of his life.  I was able to function, but I wasn't as upbeat and energetic as I usually am.  I hate that I couldn't hug or kiss him good night the way I wanted to as he was afraid to give me his bug and I was afraid to give him mine, though it may have been the same bug.  The damn hospital sent him home without doing a sputum culture, a mixup at the lab, and so the doctor just gave him routine antibiotics for pneumonia without knowing what was causing it.  The oral antibiotics didn't help so he had to be re-admitted to the hospital.   Instead of suggesting new therapies, they were more interested in making him elect DNR status, which he declined,  He wanted to try the ventilator if necessary to give him a chance to survive, since he had survived other crises.   The first day back in they gave him two pneumonia vaccines when his immune system was already compromised.  My dad believed what they said that it would prevent him from catching pneumonia again.  He didn't consult me this one and only time.  I would have advised that he wait until he was recovered from his current pneumonia before taking any vaccines.  That night he suffered a heart attack and they didn't tell me until the following morning when they notified me that he was going to be put on a ventilator.   It was probably his CHF all along or both CHF and pneumonia, they look the same in x-rays,  I don't think they treated his CHF aggressively enough.  They could have tried a different diuretic or aquapheresis but they didn't offer it.  They said he couldn't be moved to another hospital.  Sorry to ramble on.  I have mentioned most of this in my earliest posts.  

I wish you comfort and healing as you begin this painful journey.  I lived with my father all of my life, so I understand how you feel.  Take care and God bless you....

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