Judy, I can relate somewhat to your pain. My Mom's death (9 years ago yesterday) was also fraught with agonizing frustration at the inability of the doctors to search beyond her diabetes and other surface problems. When I first took her into emergency, they said it was a bladder infection and told me to take her home. I refused, saying there was something more. Then they did x-rays, found an old disc fracture in her spine...used that to explain her difficulties, but my instincts still weren't satisified. I actually had a breakdown, crying because I was so frustrated that nobody would listen. Finally, we managed to get her admitted to the orthopedic ward because of the spinal x-ray. That morning, as the doctors were doing their rounds, the head doctor roared, "what's this woman doing here"...my poor tiny white-haired 76-year old Mother lying in that bed was devastated and started crying (I hardly ever saw my Mom cry). I became very angry (unusual for me back then) and raged right back at the doctor "this is my Mom, there's something seriously wrong with her and she's here so you can find out what it is!" The doctor backed right down and sheepishly said, "ok, I would do the same thing for my Mother too".

Then they moved her to another hospital to the geriatric assessment unit. Kept her there for a month, and by the end of the month still had not found something that would explain the problems we had been seeing for months. One nurse even accused her to her face (poor Mom was sitting in a wheelchair in the common area vomiting in front of everyone when my brother, hubby and I arrived) that she was faking it for attention. We immediately had her removed from my Mom's care and the new nurse was much more compassionate. It took an amazingly frustrating amount of whining and advocating on our part to get someone to take us seriously...one doctor FINALLY gave her an MRI and found that she was FULLLLL of cancer...everywhere, spine, hips, legs - WHY hadn't they found it before we asked...doctor's response, we didn't look for it.

After that, they moved her to the back of beyond, way off in a corner of a much-neglected ward for terminally ill. It would take too long to tell you what she suffered there. Suffice to say that if we didn't get there early enough, she didn't get to eat, because nobody would make sure that her tray was close enough for her to reach...deep rings around her bum because they would leave her on the toilet for 2 hours at time (we found that one out from her roommate). It was devastating. I had to leave work several hours early to feed, wash and clothe my Mom for bed, then go back to work from 8pm to midnight to finish my workload. It was horrendous beyond words. We finally managed to get her moved to a beautiful compassionate hospice across town, but she died the day after the move.

I have lived with such guilt all these years, for the way my Mom was treated in those last two months of her life. This was a woman who was a volunteer in the hospital volunteer organization for over 50 years, who tirelessly campaigned and fund-raised for expensive machines and everything the local hospital could ever need. If we had been able to get her in the hospital where she had done all that volunteer work, she would have been treated like royalty. But in our hospital, she was treated like dirt.

Ironically, I found out, in Cuba of all places, from a public relations employee at that hospital (on vacation in Cuba) that the reason my Mom was treated so terribly was soley because of the DNR note on her file. She explained the reasons why, then promised that she would take my story back to work and she promised that change would happen. A few years later, there was a huge series in our local newspaper about the changes that had been made to the way terminally ill geriatric patients were treated. She was the main spokeswoman for the entire article, and though she never mentioned my Mother by name, I knew that my Mom's story had been the driving force behind her passion and hard work to bring changes to the system.

I'm sorry this was so long. But I too feel such pain and guilt even now...we can't go back and change history, but I hope I've learned enough from that experience to deal with future situations much differently. It's all we can do. I also talked with my Mom (through prayer) and asked her to forgive me, and felt a deep peace...wherever she is, she knows the why and all the reasons behind the decisions made at that time, she knows we made them out of love and care and with the best info we had at the time. It's helped heal the guilt.