Frustrated with the medical community :-(

You are not alone!   !!!!!!!!!! 

I could go on and on and on about this subject.  But rather then venting which I could do at ad nauseum  (pun intended...)  Let me say this.

My husband went to like 15 doctors last year trying to get to the root of a problem.  It took amazing persistance and a couple champions to take on his cause. 

I think you are absolutely right.  This is a serious issue, and needs immediate attention.  I would do these things if it were me.

1)  do some google research about symptoms, and known stuff about your father's condition to educate yourself.  clots, side effects of meds, of surgery, etc.

2) I'd consider the emergency room

3)  I'd call the Primary Care doc back and say to them this is my dad we are talking about.  This is urgent.  Do we need to go to the emergency room, or will the doctor take some responsibility to help us figure this out.

4)  Go with parents to the docs, and have a list of questions, and insist on answers and next steps

5)  Is he on medications....   what are the side effects. 

6)  Has he had a stomach cat scan? 

7)  Take charge.  Be assertive.  Don't take no for an answer....  

I'm getting worked up just typing this.   Strong feelings here. 

Oh, btw,  trust your intuition.!    GOOD LUCK.....    okay I'm done now...

I want to second Rebecca's statement. If it were me, I would take him to the emergency room and demand tests and some answers. And then I would start looking for a new primary care physician.

Don't take brushes aside as a reasonable response. Doctors are indeed overwhelmed and unfortunately the squeeky wheel gets the grease. I think in a lot of their minds, if it's not serious enough for you to percevere then it probably isn't serious enough to demand their attention.

Good luck and let us know how things go!

Thank you both, so much for your replies.  Get this...

Mom told the neuro the whole story.  As luck has it, he believes it is all related to an anti-seizure medication he took him off.  Mom even told him about some other, seemingly non-related, things goign on with dad and that boosted his confidence even more that this was the problem.

Dad is back on a medicaiton, albeit a different one, and the doc says we should see a difference, is there is to be one, in about 10 days.  I'm SO hopeful this is the case.

You know what else is hard about this whole thing?  I desperately want to go with them to appointments and be firm with the docs but my parents are resistant to that.  They don't want to rock the boat no matter how much I tell them they have to a bit.  Nobody is going to walk in there yelling, screaming and making threats.  But it's perfectly okay to say "We need answers.  If you can't or unwilling to delve into this for my dad, who can.  And can you call to get us an appointment for as soon as possible."  And then call to follow-up in 6 hours and then 1 day and then a day and a half. 

Chris, you hit the nail on the head.  If the issue isn't big enough for us to persevere, then it won't get any attention from the docs.  If we're quick to accept a brush off, why would we get any urgent and thorough attention?

And I'm with you both...it's time for a new general physician.  I mentioned that to my parents and they both were like "what?  But she's so nice!"  Yeah, so is my next door neighbor but he isn't a doctor.  Niceness doesn't equal quality medical care.

Thank you again!  And keep your fingers crossed that we've found the reason behind dad's recent issues.  The bigger picture still needs work, but hopefully this round of "put out the fire" has been dealt with.

wow that's cool.    I hope it works out too!   Sounds like you really have a good grasp of what's going on.  That's great!

I was talking with my best friend about her 80 something year old parents.  And something about their generation in particular.  They  believe the doctor knows best, and don't - won't question it.  It makes my friend nuts. And it just occured to me that it might also be a bit of not wanting to lose sense of independence or ability to manage on their own.  just babbling here.   One thing I did, was to say, that I would like to come so that I understand better too. 

okay fingers are crossed 

This is a great discussion, everyone. Thanks for starting it "frustrated;" hope you don't mind if I pen that screen name for you! I so completely agree with Rebecca about the "older generation" assuming doctors are right, and feeling it's not their place to question. At least some older generationers. I've seen a few questions to Caring.com experts on this same type of issue, and recall reading some advice on attending doc's appointments with parents who don't really want you there. Tell them you're just being back-up in case they miss something, and you won't take center stage. You just want to be an extra set of ears, as it's so easy for medical information to get confusing, for people of any age. Ask if they mind if you take notes, staying in the background, and giving them as much privacy as they want. Sounds reasonable. Maybe this helps...   Hope it all turns out well. Your parents are lucky to have you there as, yes, back-up.

Thank you, Kate!  That's great advice.

Keep up the good work. I do think, that the Drs. knowing you ar ethere, supporting, doing research, and getting involved , makes a HUGE difference. Keep it up!

I am hoping your father's symptoms have subsided by now and the neurologist was right.  YOur mother was so smart to take advantage of that appointment even though the symptoms didn't seem neurological.  Tell everybody and tell them often!  My own gripe is my father's former doctors who told him he had "normal aging related dementia" - a condition which does not exist - and did not tell me (despite being his health care agent) he had been diagnosed with vascular dementia (since changed to Alzheimer's).  It certainly taught me that I have to educate myself, ask a million questions, and not wait for the doctors to bring stuff up.  I think the idea of offering to take notes in your parents' doctor's appointments is a great idea and may make it less threatening for them to allow you to attend.

Your situation makes me think of Caring.com's recent blog post on the importance of consulting  with geriatricians (who can be, unfortunately, hard to find).  Even very good doctors can miss things if they don't have a strong background in aging. It makes sense, we have pediatricans. "Older age" is just as much of a unique stage of life. Always worth asking to see a geritaric specialist or someone with experience with seniors. Meanwhile, I hope things are going well with you and your dad, or as best as they can, now that you know his diagnosis. It's not easy.....  And yes, notes can help. I do this now even with my own appointments! Mine, my kids, and my dad's. I try to be subtle.

Kate,  Thanks for your reply.  Just wanted to distinguish that I am not the first anonymous poster, but the second one - not sure why I did it anonymously!  I agree with you completely about geriatricians. We have found a good primary care doc who is direct and honest and told us about the first diagnoses made by the prior primary care doc, as well as a memory disorders specialist (neurologist) at a university hospital where my father was diagnosed with Alzheimer's.  I am so grateful to have both of these clinicians in the picture.  However, read Atul Gawande on the incredibly paucity of geriatricians in this country - in fact many medical schools were shutting down their geriatrics programs a few years ago - just as we are about to have an explosion of baby boomers needing geriatric care for all the reasons you mentioned.  Hard to understand why that's happening - perhaps because Medicare is the primary payment for geriatric care and those payments are shrinking?

Hi Judith-It is interesting to wonder why geriatrics is shrinking or never really got off the ground. The need will be enormous, as you point out. I only hope the shift will include better educating regular physicians on age and aging. It's hard not to be cynical, though, about the Medicare angle. With low and frozen reimbursement rates, not exactly a lucrative speciality. Good thing some docs are still in it for the heart & healing. 

My mother just spent the last 70 days in the hospital - dealing with the primary doctor who is a geriatrician was my biggest headache. She was in for colon surgery - had two of them and the last one they couldn't close her and was left with an open wound. She is at home finally but still on a wound vac. During the whole thing, I had to deal with nurses wanting to overmedicate, not getting that my 77 year old mother worked full time still and wasn't typical. She was vital and vibrant upon entering the hospital and that is what I demanded to see when we left which is what I got but only having to fight a war almost weekly . We had many specialists on board so the primary would just stick his head in the ICU and say this was all beyond him so let the other docs do their job.BUT you bet  he charged her every day for a visit. He should have been the quarterback for her during this but all he did was sit on the bench.

Hi Mdwstwmn,

I can totally relate.  My dad has had this extended stays like described.  It feels like they do something to solve one problem, which causes another or their lack of proactiveness leads to something.  And there's always that one doc who pokes his head in for literally 3 minutes, basically says "I'm just making sure you're still alive" and charges $175 for the visit.  In one instance my dad started yelling one of those docs!  Normally I'd cringe and try to hush him, but I cheered him on!  Maybe that wasn't terribly appropriate, but I totally understand why he was feeling so frustrated!

The medical community is strangled by policies and proceedures written for them by government agencies and insurance companies.  Add the threat of malpractice and it's a thousand wonders any of them are able to help anybody.  In the last 20 years I've seen the amount of paperwork double while the number and acuity of patients in our care steadily rises ... enough so that I quit nursing for a period of three years in the late 1990's in utter frustration.  When my father was still alive I remember on more than one occasion literally begging for help in an ER for simple pneumonia.  Persistence did pay off, but it's sad it must come to that.  Eventually we did find a good doctor that allowed us to advocate for my father and actually took our input seriously, but it took over two years from the onset of his illness until we found a good fit with a caring physician ... and that's an appallingly long time when you consider I work in the industry.

Hello Everyone. I could not help  noticing what problems you were talking about and just wanted to tell you alittle about my story and I know exactly what you mean about the medical field. If any of you have time at all you can look at my profile and what I said about my mother. I went through a long haul with my mother after her car accident and she was in a coma for 30 days with a brain injury ,broken ribs, broken jaw and teeth, collapsed lungs, and I tell you it was a miracle that she survived and spent many months learning how to walk all over again. To make a very long story short they were only interested in saving her life (understandably) but they did not think of problems that would occur 4 years later when her broken teeth in her jaw began to be absessed and infected. She had metal pins in her jaw and so no normal dientists would even BEGIN to touch her. They said she needed an oral surgeon. I looked EVERYWHERE for an oral surgeon to do the work and NOT ONE would do it unless I paid them UPFRONT because they would not and do not take medicare and medicaid does not cover  dentistry on adults. Even if they had of the surgeons would not take medicaid. I went around and around for almost a year and became Frustrated, hurt,scared and angry that NO ONE would help.      Even the County hospitals would not help, they took her in and gave her antibiodics by IV and sent her back to the nursing home even though I even had letters from dientists and her doctors saying she was close to being septic and that this would eventually kill her. I had no place to go. I got the complete total run around and a few times I lost my temper and told them all that what they were doing was legalized murder. At last resort (which should of been done long before that cause my mom was suffering badly) was looked up my Counties congressman and I emailed a letter to him telling him my story and what we had been through. It took almost three weeks but I got a response from him and he said my mom would have her surgery and you should of seen the doctors and hospital jumping through hoops!!! LOL I dont know what he told them all but my mom had her surgery and everyone of her teeth was taken out and dentures made with NO money upfront. I did make payments but MUCH later after the hospital was going absolutely nuts trying to figure out how to do the billing. It took them 8 months to figure out who to send the bill to. When they finaly did get ahold of me the lady told me she had been pulling her hair out for months not knowing how to bill it because she had never had anything to go on as far as paperwork (etc). I cant tell you how wonderful it felt to tell them that they now know what its like to have the run around.  LOL. I proceeded to tell her that the Congressman was the one who arranged it because THEIR hospital was going to let my mom die. I then paid in payments at MY pace not theirs. It was truly amazing. My whole point to all this is that the medical field is full of alot of people who dont care and are only there for the money, I see it all the time. If any of you have any problems you should contact your congressman and it would not hurt to do it anyway cause I seriously doubt they really know just how bad things are unless people tell them. They may get great care just because who they are or because they have alot of money but for most of us we get treated like second class dogs. I may only be a CNA in the medical field but I will fight for my patients if I see they are being done wrong whether its by another CNA,nurse or doctor cause I know the right people to contact to make sure things get done. Sadly I do understand the frustration and I hate to see people feel helpless because I know what it's like. Sorry for this being so long but I just had to share this with you all. I know there are some good medical people out there but they seem to be coming  a rarity now-a-days.  Speaking of congressmen, elections are coming up, lets not forget to make them work for their cushey jobs, thats what they are there for so take advantage of it. 

It's wonderful that you managed to find a politician interested in your case in time to do anything.  It's nice to hear stories about the exceptions to the rule, but I can guarantee if your case had not been so serious it wouldn't have worked so well ... you see, everybody has complaints and wants more service for less money.  We advocate for patients on a daily basis and always encourage families to go that extra mile because you never know when someone will manage to be the exception to a rule.  Plus, there's a short list of charities that sometimes intervene for certain classes of patients ... Catholic Hospitals generally being at the top of that list (most of them have a sliding scale fee schedule for the poor IF YOU MAKE THE REQUEST).  Several government agencies on the local level will assist seniors with various problems (that varies from one community to another).  The state omnibudsman for your region will always look into abuse / neglect claims in long term care centers and may be able to refer you to other resources for other problems.  The thing is, all these alternative funding avenues could be persued by medical staffers ... but generally at the expense of actually rendering care to patients.  By working in the industry you must be familiar with the chronic staffing shortages every facility / agency suffers from -- there are never enough people to do all the things we need to do as set forth in the stae and federal regulations much less persue every avenue of alternative funding that could possibly benefit each and every patient in our care.  That's where loving and dedicated family members must step in to take up the slack in an overburdened, mostly government funded care system.  I'm glad I was able to investe my time and energy to advocate specifically for my father's needs during the time he needed me most because I shudder to think what would have happened had he been an impoverished unfortunate patient without family or friends ... now those are the ones that suffer most because they are left at the mercy of an overburdened system.