Three Years On

[pookie]

Wondered if anyone were in a similar situation to me? I lost my mother in April 2006. She was diagnosed three weeks before her operation with colon cancer. She was so weak and fragile and also 87 years old and when the surgeon said he wanted to operate almost immediately, we started searching for other solutions as we didnt think she could go through an operation. To cut a long story short, the surgeon falsely told us she was as strong as an ox and would withstand the operation and so we went ahead with it. Whilst in the hospital, she was under the care of a student nurse due to it being Easter and warning signs of impending heart attack two days after the operation were not picked up. Mum passed away, having tried to fight the good fight but the odds were stacked against her and she passed away in hospital, heavily under morphine due to pain and we were not able to speak to her and say everything we wanted to say. The terrible discomfort she suffered at the hands of the hospital and disinterest paid her by the surgeon once he'd operated led to a full investigation led by me. The hospital was found negligent in care but the legal situation in Australia is stacked against anybody trying to sue a hospital. It is almost impossible and solicitors/lawyers will not take the case as there is not enough financial gain for them and much money to be laid out beforehand. Mum asked me repeatedly during her hospital stay could she come home and I mistakenly thought she must stay in hospital because her bowel was not working and I thought she was in the best place at that time. I just didnt know what to do.

Since that terrible time, I have been haunted by the terrible suffering and fright she experienced in hospital. I understand that it was her time. She had advanced cancer and she was elderly but she suffered so much. I felt so helpless and I now feel I let her down. We could not speak to her for ten days after the operation until she passed away, due to the morphine. It seemed too strong. I kept telling them that.

I have tried to move on with my life. I am not married and have no children, just one half sister. My mum and I lived together for the last 20 years as we both had gone through divorce and it seemed the logical thing to do. I was able to look after her in those final years and before that we had a great time and lots of fun together. She was my best friend as well as mother. Guess you've heard that before, of course.

I wake up in the middle of the night and my mind goes to her suffering in the hospital. I have attended a psychiatrist last year and she did help me a lot but would never discuss the actual hospital problems we experienced. I asked her several times but she thought it counter productive.

Has anyone had this kind of grief?

Thank you for reading my post

[Limbo]

Hello, first let me say how sorry I am for your loss. My Mother passed away 5 weeks ago today. Although our situations are very different when I read through your email I noticed some startling similarities as well. My Mom was hospitalized in mid February, diagnosed with advance liver disease. The toxins had built up in her system causing delusion. It was the first we had heard about her disease, she kept the diagnosis a secret for ten years. The condition was caused by excessive prescription drug use and obesity.

While in hospital we experienced stonewall after stone wall in terms of her prognosis. I finally resorted to the internet for information. I knew from others experiences she could live for quite sometime. She was only 66 years old.

While in hospital my Mom suffered indignity after indignity at the hands of certain individuals (nurses) who seemed to lack the necessary professionalism and compassion to perform their jobs. We did encounter several nurses who were absolutely amazing but that was the exception not the norm. Mom was shifted around from floor to floor dependent on the treatment she required as well as moved in and out of isolation several times due to a "query" that there might be an infectious condition present. None of this made much sense and it all seemed very disorganized and bewildering.

I felt it was a tremendous burden to request information on her condition treatment and prognosis from those who worked in the hospital. But we were expected to be present and take care of many of her needs. My Mom was made to feel like a burden to the system, she had paid into for many years (OHIP).

After going through this process with her I would honestly say to anyone who asked, do not leave your loved one alone in hospital. I have little faith in the health care system here in Ontario, Canada and have absolutely zero understanding of its current mandate. Saving lives and improving quality of life do not appear to be a priority.

I do feel some sense of guilt and regret that I was not there for her more often than I was. But hindsight is 20/20 and even if I was more outspoken I felt there was a backlash scenario that might have put my mother at risk for additional neglect of one sort or another.

Bottom line I do not think you did anything wrong, unless trusting those in a position to save lives is misplaced trust.

May you find healing, and feel free to contact me via email if you ever want to chat. We are all in this together, be kind to yourself and know there are many good people on this site, who can share their experiences with you.

Hugz

Aries

[DebFromLodi]

My mom was 91 and the doctor said it was fine for her to have knee surgery. She came through surgery just fine and they sent her to rehab a couple days later. That is when and where the nightmare started. they drugged her and kept her in bed constantly. Never feeding her, we had to take shifts and spend 24/7 with her. She was totally out of it all the time. One day we went in and she was up and walking out the front door. No one would have seen this except us. She stayed in their care for about 6 months, they kept trying to get her out of there saying she was rehabilitated, but she could not even eat on her own let alone walk or dress herself or go to the bathroom. Finally, we decided to take her out and let her go to my brother's house so she could learn to walk. Well, needless to say, she never did come back to us the way she was. We ended up having to put her in a home and they could not get her to walk either. We saw to it she ate and they did take good care of her there. But not walking and getting any exercise was the reason for the fluid around her heart, i guess, which is what killed her. We should have sued that rehabilitation hospital just so they could not do it to another person.

Thanks for letting me share our story.

[pookie]

Hello, first let me say how sorry I am for your loss. My Mother passed away 5 weeks ago today. Although our situations are very different when I read through your email I noticed some startling similarities as well. My Mom was hospitalized in mid February, diagnosed with advance liver disease. The toxins had built up in her system causing delusion. It was the first we had heard about her disease, she kept the diagnosis a secret for ten years. The condition was caused by excessive prescription drug use and obesity.

Hugz

Aries

ARIES, THANK YOU SO MUCH FOR YOUR REPLY TO MY POST. I AM SO SORRY FOR YOUR VERY RECENT LOSS. HOW SAD THAT SHE HAD KEPT HER DISEASE FROM YOU FOR SO LONG. IT MUST HAVE BEEN VERY HARD FOR HER DURING THOSE YEARS BUT SHE OBVIOUSLY DID IT OUT OF LOVE FOR YOU ALL. SHE DIDNT WANT YOU ALL TO WORRY. I HAD A SNEAKY SUSPICION MY MOTHER DID THE SAME ABOUT TWO YEARS WHEN SHE STARTED LOSING WEIGHT. SHE HAD A COLONOSCOPY AND I TOOK HER TO THE SURGEONS AFTERWARDS AND SHE WENT IN AND OUT VERY QUICKLY AND I WAS INDIGNANT THAT THEY HADNT SPENT MORE TIME EXPLAINING WHAT THEY HAD FOUND. I WAS ALL FOR GOING BACK IN AND TALKING TO HIM AND SHE STOPPED ME, GETTING VERY MAD, AND SAID NO, I DONT WANT YOU TO, SO I DIDNT. SHE WAS VERY INDEPENDENT AND I THOUGHT IT WAS JUST THAT, BUT NOWADAYS I DO WONDER.

HOSPITALS ARE NOT WHAT WE ALL EXPECT THEM TO BE. YOU SOUND LIKE ME. I HAD FULL FAITH THAT WHATEVER THEY WOULD DO, IT WOULD BE THE RIGHT THING AT THAT MOMENT. I HAD SUCH RESPECT FOR NURSES. I NEVER DREAMED THEY WOULD BE SO DISINTERESTED OR LACKING IN EMPATHY. I KNOW THEY ARE SURROUNDED BY TERRIBLE SUFFERING AND IT MUST BE HARD TO LIVE WITH BUT THEY HAVE SUCH A GREAT RESPONSIBILITY AND IT CANNOT BE ABUSED. THESE ARE HUMAN LIVES AT RISK AND NOTHING IS MORE IMPORTANT TO THE INDIVIDUAL AND THE FAMILY CONCERNED. WE MET ONE GOOD NURSE, A SENIOR CALLED ROSEMARY. WE MET HER RIGHT AT THE END WHEN MUM WAS BEING WHEELED INTO THE GENERAL WARD, MEN AND WOMEN TOGETHER, TO PASS AWAY. THIS WAS JUST ANOTHER OF THE TERRIBLE THINGS THAT HAPPENED TO US. I SAY US BECAUSE WE WERE SUFFERING RIGHT ALONG WITH MUM. WE CLUTCHED HER HANDS WHILST BEING WATCHED BY PEOPLE SAT ON THE ENDS OF THEIR BEDS. I TRIED TO DRAW THE CURTAINS TIGHT AND ONE OF THEM WOULDNT CLOSE. THE NURSE, ROSEMARY, SAID TO US, IF YOU WANT TO PUT IN A COMPLAINT ABOUT THIS, PLEASE DO SO IN WRITING. ITS HAPPENING ALL TOO OFTEN. AT THE TIME, I DIDNT TAKE IT IN. IT WAS ALL TOO OVERWHELMING. LATER I REFERRED TO THAT IN MY COMPLAINT LETTER BUT IT WAS JUST ONE ITEM IN MANY. BUT SHE SHED TEARS ALONG WITH US WHEN MUM TOOK HER FINAL BREATH AND I WAS SO APPRECIATIVE OF THAT AND SENT HER FLOWERS LATER ON. SHE HAD BEEN THE ONLY ONE.

i, TOO, NOTICEDD HOW MUCH THE NURSES DISTURBED MUM IN THE TEN DAYS SHE SUFFERED IN THERE. AT ONE POINT, SHE ASKED ME TO FIND ANOTHER PILLOW AS SHE WAS IN DISCOMFORT AND TOO FLAT WITH THE TWO PILLOWS. THE SISTERS IN THE ICU SAID THERE WERE NO MORE PILLOWS SO I WENT IN SEARCH FOR ONE. I FINALLY FOUND AN EMPTY BED WITH FRESH PILLOWS ON SO TOOK THAT BACK WITH ME AND MUM SAID SHE FELT SO MUCH MORE COMFORTABLE. FIVE MINUTES LATER, TWO MEN CAME TO TAKE HER IN FOR AN XRAY OR SOMETHING. SHE WAS GONE THREE QUARTERS OF AN HOUR, CAME BACK VERY EXHAUSTED AND WHITE. THEY PUT HER BACK AND TOOK THE EXTRA PILLOW AWAY WITH THEM. I RACED AFTER THEM AND GRABBED IT BACK AND GOT MUM A BIT COMFORTABLE AGAIN AND THEN THE NURSES CAME IN TO TAKE HER FOR A SHOWER. I SAID SHES TOO TIRED JUST NOW AND THEY NO NO SHE MUST GET UP AND START WALKING. IT WAS SO CRUEL TO WATCH THEM. THEY TOOK HER INTO THE SHOWERS AND THEN BROUGHT HER BACK IN A WHEELCHAIR BECAUSE SHE WAS TOO WEAK TO STAND UP. SHE WAS CRYING. OH, GOD, ARIES, THE IMAGES ARE VIVID IN MY MIND. I HAVE THOUSANDS OF MEMORIES LIKE THIS. SHE PLEADED WITH ME TO COME HOME AND I STILL THOUGHT SHE HAD TO BE THERE UNTIL THE SURGEON TOLD US WE COULD GO HOME. I COULD HAVE SAVED HER SOME SUFFERING. SHE MIGHT NOT HAVE EVEN MADE IT HOME. WE LIVED 200 KS AWAY BUT STILL SHE WOULD HAVE BEEN WITH ME IN THE CAR, WRAPPED UP WITH BLANKETS AND LOVE, AND THAT WOULD HAVE BEEN PREFERABLE. I KNOW IT WOULD.

THANK YOU FOR YOUR REASSURANCE. IM SORRY FOR YOUR MOM'S SUFFERING, TOO. YOU SOUND AS IF YOU HAD A SIMILAR EXPERIENCE TO ME. YES, WE CAN HONESTLY SAY WE DID TEH BEST WE CAN BUT OH WHY CANT THE HOSPITALS HAVE SOMEBODY STOOD BY TO EXPLAIN WHATS HAPPENING AND TELL US WHEN TO SPEAK UP AND WHEN TO ACCEPT. A HOSPITAL IS LIKE AN ALIEN PLANET IF YOU DONT UNDERSTAND HOW THE SYSTEM WORKS.

SENDING LOVE TO YOUR MOM UP THERE AND THANKS AGAIN TO YOU.

[Limbo]

My mom was 91 and the doctor said it was fine for her to have knee surgery. She came through surgery just fine and they sent her to rehab a couple days later. That is when and where the nightmare started. they drugged her and kept her in bed constantly. Never feeding her, we had to take shifts and spend 24/7 with her. She was totally out of it all the time. One day we went in and she was up and walking out the front door. No one would have seen this except us. She stayed in their care for about 6 months, they kept trying to get her out of there saying she was rehabilitated, but she could not even eat on her own let alone walk or dress herself or go to the bathroom. Finally, we decided to take her out and let her go to my brother's house so she could learn to walk. Well, needless to say, she never did come back to us the way she was. We ended up having to put her in a home and they could not get her to walk either. We saw to it she ate and they did take good care of her there. But not walking and getting any exercise was the reason for the fluid around her heart, i guess, which is what killed her. We should have sued that rehabilitation hospital just so they could not do it to another person.

Thanks for letting me share our story.

Hi Deb, so sorry for your loss. This health care issue does seem to be the link to a lot of pain endured when a loved one is ill or passing. I have heard some wonderful stories about hospice care and regret not having that opportunity with my Mom. But it all happened very quickly in the end. She got pneumonia on the May 14th and passed early morning of May 16th. The ironic part they had found her a bed in long term care and she was scheduled for transfer on May 19th.

I cannot imagine the pain you and your family must be feeling. It sounds like your Mom lived well "91" wow! To be put through such a heart rending situation due to the rehab hospital at the end is just wrong. I cannot say much more. If you feel you have the grounds and means to sue the hospital, it might not be such a bad idea or maybe just raise awareness of what is going on behind those walls. I know that I have my story to tell, I am a writer and journal everything. But right now my heart is in too much pain to focus on the "good" fight.

May you find peace and healing

Hugz

Aries

P.S. - I am here at the other end an email if you ever feel like chatting. I joined this site only a few weeks ago and find it helps me get through the day.

[Sherr]

What the hell is wrong with the system?? I, too had a very similar experience and have endured 5mths of anxiety and heartache, trauma, anger, sadness, anger and more anger, but I manged to supress it, only because I needed to be there for my Mom. My mom was first hospitalized on Dec 24, 2008 (in BC) and to a hospital which I ablsolutely heard nothing but negativity with, but being the closest thing to her, it had to be done. She was delierious, to say the least, I had no idea what happened to her, as she stated that she may have had a stroke, but I did know that definately she was not the same person and she didnt function properly. Now, my mom was a bi-lateral amputee, which means she had no legs, due to Diabetes (terrible disease!!) so she needed use of a wheelchair, which she had a motorized one. She was very independant, sometimes almost too much, but as long as I talked to her every other day, I knew she was ok. So, that day she was off to the hopsital via ambulance and had a stay of 5 days in emergency, because of the overload of people, I guess. So now, after her 3 day there, somehow someone left her rails of her bed down and she fell onto the floor. CAN YOU IMAGINE THE LOOK ON MY FACE WHEN I ARRIVED THERE LATER?????????????????? WTF???????????? (sorry) All I got was, "oh, she fell out of bed and we don;t know how"? HOW DO YOU REACT TO THAT?? IAM AT THERE MERCY TO TAKE CARE OF MY MOTHER, WHO IS OBVIOUSLY NOT QUITE COHEARANT, AND THIKS SHE CAN DO WHAT SHE NORMALLY DOES?? WAS ANYONE CONCERNED?? WAS I SUPPOSED TO BE THERE EVERY WAKING HOUR, JUST SO THAT I COULD MAKE SURE SHE WAS OK????? These are the questions that still race in my head and no wonder I can't over this!!!! Oh and threre is more.......so, after she fell out of bed, they are now on alert of her and carefully watching her, not to mention that she had xrays and there was a fracture in her back.......an now here is where i question her safety in this hospital. Her quality of life has now been diminished by this "accident" and now not only dealing with the goings on of why she isn't cohearantly there, but now for sure, she cannot use the strenght of her arms, with her back to get in and out of her chair!!!!!!! LIKE, HOW CAN ANYONE DEAL WITH SUCH INCOMPATANTCIES??? I am relying on the sysytem to do their job and not have me meddle, but in the other hand I know that I cannot possibly take care of my Mother single handedly, I don;t have the strength, no one does, as it take a toll on your well-being and life.

To carry on with my story, she was now very incapacitated and very unhappy and very uncomfortable etc... this is so heartbreaking to see and as I had to endure it everyday that she was there and still work full time, with NO time off....she eventually went to a room, but no conclusive evidence of a stroke, but definatley something not right, but hey, I am no Dr........she stayed there for about 3 weeks and then they called me that day that she was being let go, but with no notice of it, and told me she was on her way..in a taxi and I talked to a Dr and he says that she seems ok, and that she wanted to go home......who the hell would want to stay there anyways??? But whatever...I meet her at her apt. where she has been taxied and when she gets out I know that she is not alright, but once again, what do I know?? I get her settled and I know that she is still in alot of pain with her back, and I am not confident about her staying by herself, but I don't have a choice, but I see her everyday and call her every day to make sure she is ok. Now, here is the the next in my traumatic journey, in just 2 weeks something happened to her and now it seems she had a stroke and she was not capable to call 911 and I tried to call her (as \i went away for a few days and asked that my cousin do something if I need her to get to my Mom, but I failed to giver my cousin my mom's phone number...(guilt part 2) so as it was, I called my Mom and she never answered the phone. I callled half a dozen times and then got a sudden sick feeling like something was very wrong. I go there and more trauma I endured, yet again, and she was not ok and that she must have been on her couch for maybe 2 days, straight..(I will never know) There is more to this, but I am keeping the graphics out of this. I call the ambulance and off to the same hospital she goes......the terror of that was too much, but I had no other options...

She spent all of Feb, March and was moved to a temp. care facility in April. End of April, she was moved to a permanent place and that is where is basically passed away. So within 5 mths, my Mom is gone, poof..just like that. The last traumatic scene to all this was when she got moved to her new place she was only there for a bout 3 weeks when she had to be admitted to ICU as she apparently had a heart attack....She had been nauseated for the last 4 days of her life and when the day that I went to visit her, was the last day that I would have any verbal contact with her..if only I knew, but I that is why I went to visit that day....I knew...something......She was rushed to another hospital, the good one that I like, and was in ICU until she passed away. When I orginally got the the 'good" hospital, and they examined here etc..she had a tube down her thorat..etc... and the Dr basically said her body was shutting down and explained my options, none of them that would make her quality of lief any better....he mentioned that seh was this and that and dehydrated..well funny enough I told him she had been sick all week....now would anyone agree that, that is a red flag screaming????? So this is where I am at.......angry, pissed off, hurt trying to cope with my mom's death, trying to reason with not blaming the governing bodies involved....I am not sure why I haven't started smoking again....and therapy will get expensive once I have met my extended amount....

[Limbo]

Pookie, thank you so much for the condolences.

Judging by the substance in these posts, we have a serious problem and it is not limited to a particular country. The negligent and dehumanizing treatment of individuals by those entrusted with their care must stop. Like Sherr I don't want to bash any particular organization, most likely the issues are system wide and very complex. But maybe we who have been through this nightmare can help by adding our voice to those who work toward raising of awareness of the severe problems that exist in our health care facilities.

My Mom was a fighter, she cared deeply for the undergone and when necessary was a force to be reckoned with. That is one of the things she taught me. I know that once I feel a bit stronger I will be doing my part here in Canada.

As for what is wrong with the system (I think Sherr asked that question) I am starting to wonder what isn't wrong with it!

Hugz and healing pookie and to everyone here.

Aries

[pookie]

What the hell is wrong with the system?? I, too had a very similar experience and have endured 5mths of anxiety and heartache, trauma, anger, sadness, anger and more anger, but I manged to supress it, only because I needed to be there for my Mom.

Oh, Sher, what a story, what a terrible, heartbreaking story. Your poor mom and poor you, too, and your family. Her suffering with one thing after another. You said something there which is at the heart of the matter. After the lives of bravery, determination, love, work, everything that a human being goes through, why does it have to end up like this? What a terrible end to our loved ones' lives. I would have grieved terribly anyway when my mum left me, we were so close, but my grief would have been tempererd with knowledge that she had accomplished so much in her life and was such a beautiful caring person and I would have been able to understand dying a little bit easier. I think that goes for all of us that has watched our loved ones suffering unnecessarily. Their pain when they have a disease, yes, we all accept that, inability of doctors to do anything once it gets to a certain stage, yes, we understand that they've done their best but its this NOT CARING attitude.

In Australia, we are desperate for nursing staff and doctors in rural areas. None of them want to practice in these areas and they are offered all kinds of financlal inducements by the government just to come for two years but when one goes back to the cities and the big money, these rural communities are left with no one and when one comes along, they grab them irrespective of how good they are or not. A bit of a lottery. Then, nobody will criticise them because if they go, even though they'e not very good, we are left with nobody. Nursing staff are run off their feet doing double shifts. When something like public holidays, Easter, for example, comes around, the nurses jump at the chance of maybe getting some time off with their families. You cant blame them. Yet this situation here means that student nurses have more responsibility than they should have and it is accepted by hospital staff - better than nothing, they think, which it is, I suppose. Thats the side of nursing which we all understand and sympathise with. But where does this leave us and our loved ones? When we had our first interview with the Medical Superintendent of the hospital where mum passed, he actually said, with a laugh, "Dont you know that in a hospital it's who shouts loudest?" I just looked at him in shock. He quickly sobered up and kept going through Mum's file then but then followed it up with, "Look, my job here finishes tonight and I have five more cases/interviews to do today before I leave of people complaining about treatment. I cant give you any answers."

All I know is that the suffering all this causes, and it seems world wide, too, is not recognised enough, all the devastation it causes afterwards by people grieving for years and years, long after they have put it behind them if theyve given it any thought at all.

Sherr, your story really touched me and all I can think of to say is that your mom is in a better place now and has no pain, only surrounded by love, is watching over you all the time. you have nothing to forgive yourself for. You did the best you could at that particular moment. Guilt should be thrown out the window. When our guilt thoughts are analysed right down to teh core, it was not us that was the guilty party, it was the hospital/medical systems.

Hugs

Pookie

[Sherr]

Thanks ever so much for listening. As you can see I have alot of pain that I am trying to get a handle on, via therapy. It is helping, but this is not quite over yet...I actually saved my conversation to this discusssion, just so that I remember what i went through, but try to overcome it somehow. I am so glad I found this site, expressing how I fell and listening to how otheres feel and what they have gone through, makes it easier to understand why I feel all this hurt. I am the strongest person I know, but now I find that I seemed to have an anxiety problem, that goes without saying, I stuffed everything away, just so I can look strong for those who need, but I also neglected myself in the process. I have to undo years of damage and also try to heal.......((((huggs)))) to all and myself...