I am so frustrated that my mom's doctors never return my calls. I'm a long-distance caregiver, a nurse, and I have gone to mom's about every 10-12 weeks over the past year or so. I hear things from mom and try to contact her doctors, but they will not return calls. I have NOT been rude or a pest.
Her surgeon never visited her for four weeks after surgery, and she is still in the hospital, in a sub-acute unit for intensive IV antibiotic therapy. I repeatedly requested for him to see her, as we had no idea of the plan of care. I I asked the floor nurses, "Is it typical that the family must request the doc to visit?" They said "No". He finally visited her Friday, and told her 1) He doesn't come to that unit. 2) He didn't know she was still in the hospital 3) He did not know she was not doing weight-bearing on her (broken & repaired) hip yet. That's because he never saw her!
One doc tells us one thing, and the next doc say something completely different. There seems to be no coordination of care, and certainly no communication with me, even tho my name and numbers are posted on the front of her chart, and I am her health care power of attorney. She, herself, just does not know the questions to ask, or forgets, when they (rarely) visit.
I called her PCM on Saturday, requesting a call back, TWO times, at 10:00 AM and 4:00 PM. I held my phone in my hand all day. He never called. I called again Sunday about noon, and he finally returned my call about 2:00 PM. I went over my serious concerns with him, and he just verbally shrugged.
I just don't know what to do. I feel all alone in caring for her from 750 miles away. Any advice? She lives in a very small town area.
Answer
I am so sorry you are going thru this and at least can validate your feelings.
My Mom was in hospital or long-term for almost 3 months earlier this year--prior to that in robust health, but had a terrible adverse reaction to a (bad) generic BP med. Before I could get out there, I was trying to call but found I had to repeat critical information over and over. Was puzzled when each time the nurse would ask 'so how long did she smoke?'--were they not talking with each other?
When on site I realized they are 'putting (billing) info in' to laptops but don't seem to look at the information AND no longer apparently debrief one another at shift change..and then the doctors ended up with a more watered down trickle of information and in some cases did little to learn more.
I and my brother did end up having to go out there and I would park myself in her room at about 7am, all day into the evening to 'catch' specialists--most were friendly enough (I think in part because she had someone there?) and would ask a few Qs, volunteer information BUT did not seem to share information with one another or her doctor, who obviously felt odd man out because a GP. Their views sometimes contradicted each other leaving medication decisions etc up in the air. Months later, we're still not clear does she now have serious heart condition or is it lung etc.
Then hospital waited til brother left to return to drive back to his state one day, to try to discharge Mom--still on oxygen, with heart racing, without her GP's knowledge?! I had been worried about just that and happened to call her when she just found this out--so scurried around telephonically to alert her doc. Hospital then said would have a 'coordination' meeting with caregivers re next steps--but didn't tell or include her doctor and timed it so neither brother nor I was there after having spent weeks waiting for just that.
During one of my visits, they released her while still obviously quite ill and she ended up being re-admitted 2 days later. All along the way, assumptions and then decisions were made by health care workers NOT communicating even with each other, not using their d--- electronic records, etc. and not including the patient, family or her (wonderful) doctor in discussions or decision-making if they could get away with it. And this btw was a highly rated hospital.
The worse to me was the damage to Mom's self-esteem--in her worse moments health-wise she remains a highly intelligent woman, though at times she was too weak to express herself as well as normal. She also really does hate to complain, so if she does I know something is truly wrong.
But too many times, she was ignored, talked over, etc. even with me sitting there -- at a couple of points she caught critical medication errors, but they only did something about it bec I happened to be around and I was of course listening to her. One jacka--- specialist not even related to her case woke her up at 2am to ask her some bit of trivia, then when she asked who he was, callously said 'I've been here before, don't you remember?' I only wish I'd been there.
And though sometimes I was listened to, it was often with obvious resentment. My brother, normally maybe too easy-going, found himself going up and down the halls trying to find someone to connect to on Mom's behalf, bless his heart. As you have found, there is a delicate line between being seen as a pest but also making sure they don't ignore or worse, harm someone you love. I spent a lot of time myself cultivating the professionals I could find who would listen, did care, and tried to get our questions answered. I praised very highly when there was anything to praise.
I know from first-hand how hard it is to deal with this long-distance; in my case I was able to get out to her, twice in a few months for several weeks but frankly worry now because she wanted to go back to living on her own (in our case, luckily with a caring doctor).
I am wracking my brains trying to think of something that could help you. One thing I've done sometimes is FAX requests especially to a doctor--as you know, many offices still use a fax a lot, it gives them time to process what you are asking or saying--and it documents your attempts to communicate. This last I think has sometimes helped in getting a call-back; or I have called them after a few hours or the next day, referring to the fax. In my case I assume I will not get the doctor on the phone but have found some decent nurses to talk with; occasionally have had the sad feeling they are trying to help on their own.
It sounds like there is not the option of another physician in that small area...I wonder if it would help when you are there to talk to the social worker (case worker?) just to get a sense of who else might be able to watch out for your Mom when you are not able to be there.
Please know that you and she are in my thoughts--Cassie
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