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Born in the 50s

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Discussion Forum

Buying A House

Started by Tekwriter. Last reply by shelley Sep 15. 10 Replies

Anyone experiencing loneliness?

Started by bblue5. Last reply by bblue5 Sep 13. 6 Replies


Started by Mike. Last reply by Athena53 Aug 28. 19 Replies

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Comment by CarLady on May 29, 2018 at 6:26am

Good morning from Toronto.  The comments about guilt strike right to the heart; its been 4 years 8 months since my DH of 34 years passed away from AML leukaemia. He was a lovely man, kind and modest to his last hour.  After 14 months of chemo, transfusions and clinical trial treatments the Dr. advised there was nothing more that could be done and it would be cruel to put him through more.  By this time he was so weak he needed assistance to walk but his determination to stay with us never wavered.  His last week was spent at home, where he wanted to be, with our son and daughter and I. We all took leaves from our jobs. His last 3 days he was almost manic, not sleeping, roaming all over the house and large garden. It was as if he wanted to make sure everything was ok before he left. A palliative care practitioner visited us and said we should just let him do whatever he wanted because this was his journey and his way of preparing for it.  The Dr thought he might last another week or so.  He passed away only 2 days later on the Labour Day weekend.  Although i promised him we would make sure he didnt suffer at the end, his last several hours he was suffering.  It took many hours to get a visit from an on call doctor because it was a holiday weekend.  When she came, she put a port on his arm and taught us how to give him morphine shots in his arm for the pain. Then she left.  My kids and i did this twice, and he fell into a deep sleep.  Around 2 in the morning i was half asleep on the sofa when i imagined i felt his presence beckoning me to his room.  I told myself i was imagining things and stayed where i was listening to his breathing. Then suddenly it stopped!  I leaped up to his room where the PSW was and asked her if he was ok.  We checked for signs of life but he was gone. I stayed with him for several hours after as we could not get anyone until the next day due to the holiday weekend.   I cannot ever forgive myself for not getting up to hold his hand when i felt his presence. I hope his spirit knows we were with him in our hearts and forgives us.  Peace to all of us.  

Comment by Barzan on May 29, 2018 at 5:47am

When my husband was diagnosed, it was at the hospital where I worked with the medical staff and therefore, he was seen by the chiefs in the specialty.  Needless to say, his care was excellent.  At the hospice, because of my connections, he was given a private room with 2 large windows he could watch the outdoor activities and gardens.  The staff provided excellent care.  Perhaps, this is what it takes to get the best care for a loved one.  It really saddens me.

Regarding husband's clothes, I picked out his favorite shirt and a friend of my mother-in-law's made a teddy bear out of it.  The bear sits in my bedroom and gets lots of hugs.  It sure is comforting to have that little keepsake.  When I got rid of his clothes, I donated them all to a homeless shelter instead of goodwill.  I wanted someone needy to have them.  it was difficult to empty his closet but knowing that the clothes will be appreciated helped ease my sadness.  

Lets be kind to ourselves.  Sending good joo joo your way.

Comment by NoLongerInBergenJC on May 29, 2018 at 3:32am

Reit, I bought an expensive gas grill during my husband's illness.  For me it was a gesture of hope over reality.  We never used it.  I had it put on the moving truck when I moved.  It is still outside.  It is probably all rusted out now because I never even uncovered it.  I have never used it and probably never will.

Comment by booktime (Susan) on May 29, 2018 at 1:41am

Riet, step by step. Don't force it, just do if you want.

Not out of your mind, just out of the reality you knew so well and trying to claim a space in the new.

I was lucky in that Ed didn't have much of a wardrobe - he worked in a kind of a factory so no ties needed! But it took me several stages to take care of his things.

I'm wearing a favorite blue shirt of his right now!


Comment by riet on May 28, 2018 at 11:42pm

This morning , for the first time after his passing, I had the courage to open his wardrobe.  I had to close it quickly. Because there were all those things we bought in the last months.  Most of those, he never wore more than once.  

I realize we bought them as a kind of incantation of death: Look we buy these things, you can't take me now.

I must have been out of my mind.  As I still am.

Comment by shelley on May 28, 2018 at 9:24pm

Melissa, Yes, I didn't even file a complaint against the convalescent home where my dad died.  I was just so sad.  Didn't have the energy.   And my husband-  I wondered at the time if I should have moved him to a better hospital, but I've since heard horror stories about every hospital in the Bay Area.  I told my dentist recently about my husband's endocarditis (which is often caused by dental procedures);  she told me that she knew a man that developed endocarditis from a dental procedure and he survived after 99 days in intensive care.  I wondered why my husband didn't have success after 99 days.  As amazing as American medicine can be, it can also be flawed and unsuccessful.  Battles must be chosen wisely.   

Comment by Melissa on May 28, 2018 at 9:01pm

My husband's mother suffered a major heart attack and was taken to the closest hospital; the worst in town. We were all pleasantly surprised when they seemed to be doing an excellent job of caring for her and keeping us informed.

We got a call late one night that she was going to be transferred to a hospital in Los Angeles, about 50 miles from our town. The doctors felt she would get better care there. My husband and all of his siblings refused to authorize the transport. She clearly wasn't strong enough for the trip.

We got another call in the morning. They moved her without permission and she died in the ambulance on the way to Los Angeles. Clearly malpractice.

My husband was a lawyer and knew excellent malpractice attorneys. He met with one, and he told me later that he wasn't going to sue. He knew it would take at least a year, probably longer, and be grueling for the family. We wanted time to mourn his mother, not fight about her.

I understand how he felt, but I think if it had been my mother, I would have sued. It just comes down to what you personally feel is best in the long run. Nobody can decide for you, but they can advise you.

Comment by shelley on May 28, 2018 at 7:50pm

NoLongerInBergenJC, Sometimes suing a hospital is the right & appropriate thing to do, sometimes not.  Hard to know the difference.  I helped a woman who worked for me find a lawyer and sue San Francisco General Hospital and she won many millions of dollars- the highest award ever paid out by the hospital.  

When my dad was in a convalescent facility here in the Bay Area and developed a bed sore which eventually killed him, his doctor told me to sue the facility.  I gave my Dad's health history records to several prominent lawyers who all said that they would not take the case because my Dad was an alcoholic which would adversely affect the outcome.  Didn't make sense to me-  even an alcoholic deserves justice.  But I was never able to follow through.  

When my husband was in the hospital, a number of mistakes were made.  For example,  one night the dialysis machine kept beeping (meaning there was a problem) and instead of calling the machine specialist, the nurses just kept resetting the machine.  When the machine specialist finally on his own, checked on the machine/my husband, he found a huge blood clot that had been clogging the tube.  He was angry with the nurses and told them so.   There were other examples of incompetence, most happened at night.  But the bottom line was that the heart surgeon warned me that after an eleven-hour surgery, the possibility of a clot from blood or bacteria was probable.  And I decided that the clot in the dialysis machine was an example of that.  

It's possible to file a public complaint against a hospital/medical facility (here in California) but it's not an easy task and has to be done within one year of the incident.  A letter to the CEO might never reach his/her desk.  But maybe finding a way to publish such a letter would be beneficial.  Maybe in the local newspaper?  Most important is for you to find peace.  I wish you success in whatever path you choose.     

Comment by NoLongerInBergenJC on May 28, 2018 at 6:48pm

First of all, thank you for letting me talk about this even though it has been five years.  I find that I have an obsession with stories that are similar to mine.  

My husband had moyamoya, a congenital disease that causes the internal carotid arteries to shrink so they cannot provide the brain with sufficient blood.  He'd already had one significant stroke that either he never told me about or didn't realize he'd had.  We had no idea when that happened.  He had his stroke 4 weeks after the first of two corrective surgeries.  He had been drinking a lot of tomato juice in the days before the stroke from which he never came back.  I thought it was the salt that was the problem, but I later found out that tomato juice is rich in Vitamin K, which is a coagulant.  His stroke was ischemic, so I truly believe that he suffered death-by-tomato-juice.  I had told him that tomato juice was not hydration but he wouldn't listen to me.

The local hospital that they took him to botched his care because his seizures were not broken with AEDs and they let him stay in status epilepticus for 36 hours and only after I screamed at them after talking to his neurosurgeon in NYC did they intubate/sedate him.  He was transferred to the city the next day.  After 10 days we had the first family meeting, where they said that they were going to try to take him off the AEDs and see if he woke up (he was unresponsive to stimuli).  They suggested I stay home the next day and I did.  And sure enough, as soon as they took the first drug off, he had another stroke and another significant seizure.  That led to the second family meeting where they said that they cannot take him off the AEDs without him going into seizures and having more strokes.  The only way they could give him more time to see if he'd come out of it was to do a trache-and-PEG.  (They only give them 2 weeks on vent because of risk of infection.)  The other alternative was to just wait for infection to set in.  So what could I do?  I knew that he would never even have wanted the intervention he had.  They offered palliative sedation which would let him pass painlessly.  

It should be noted that he also had bladder cancer, and had had to be taken off chemo because of the risk of stroke with the chemo.  He had no visible tumor, but they were unable to do surgery because of the moyamoya and his was a sarcomatoid cancer, which is an aggressive variant.  So the truth is that he was facing a bleak prognosis anyway.

His neurosurgeon was devastated.  I have no issue with his doctors at the hospital in NYC.  I had thought of trying to sue the local hospital, but I knew that with bladder cancer I wouldn't have much of a case.  And I didn't want money.  I wanted them punished.  But I didn't do it.  In the years since, I have often wanted to write to the CEO of the hospital and explain what happened.  I still might do it.

@shelley:  Like you, I find life is easier when I think about those last few years when he was difficult to live with due to depression and job issues.  When I think about the happy times, as you say, the enormity is just too much to deal with.

Comment by shelley on May 28, 2018 at 3:56pm

Melissa, That's interesting about the neurologists.  No one (my husband had six different doctors while in the ICU) said anything to me about brain activity.  After my husband's surgery, he was still on all the machines, but no pain medication.  And he wasn't waking up.  Several doctors said that I should take him off the machines, two said, "not yet".  His heart surgeon and I made a connection, he was one of the "not yet" doctors and became John's primary physician.  I was so hopeful, and he could see how devoted I was to my husband.  He told me that he would do everything possible to save John and that he would be honest with me when it was time to let go.  So when he told me it was time, I knew that it was.  No neurologists.  


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