I was recently in Florida to take care of my 89 year old mother and I have to say that the lack of compassion amongst her doctors and practically everyone who works in those offices is appalling. Up until her most recent hospital/rehab center stay she has handled all of her affairs but it became apparent that she is no longer able to do that as her short term memory is gone. Let’s start with her most recent issue and what landed her in the hospital.
On July 6 she was experiencing dizziness. She lives in a retirement village and thankfully there is medical help within arm’s length. She called an onsite nurse and that nurse took her to the hospital where she was admitted. We didn’t find out until about 5 days later. They were treating her for a low heart rate and adjusted her medications accordingly. After she was stable enough, she was released to a rehab center where she stayed another two weeks to regain her strength making the total time away from her home 3 weeks.
Meanwhile, I was busy attempting to find out exactly what kind of care she needed until I was able to get down there to see for myself, about 2 weeks after her release from rehab. We ended up hiring a home health care company based solely on her social worker’s recommendation, the social worker at the rehab center. I didn’t know any of these places and didn’t have the time to research them prior to my trip to Florida. While I was grateful that my mother had help, I would not recommend this company to anyone because of all the things that occurred prior to my arrival and what I learned while I was there.
I had already made plans to visit my mother with Miss M because Miss M hadn’t seen her grandmother in nearly two years. But I changed my arrival by four days in order to figure out exactly what my mother needed and then Miss M would fly solo on the original day. The aide that had been with her 24/7 was to await my arrival at which time I would take over.
And now for the beginnings of my healthcare misadventure dealing with my mother’s doctors’ offices. My siblings and I decided that it would be a good idea if I could accompany my mother to her primary doc’s appointment and what a struggle it was just to get in while I was there. I called as soon as I knew I would be in town the following Wednesday thru Monday thinking surely I would be able to get in before I left. I ended up with an appointment the Monday before my departure on Tuesday but I was really hoping to get in Wednesday - Friday and asked if there was ANY way to get in sooner, explaining that I was only in town a short while and that we needed to make decisions based on that appointment. I was told that I could call 24 hours in advance to see if there were any cancellations the following day. I had never heard of this and it did not set well with me. The day before I went to Florida I called again, again explaining that I was only in town a short while and needed to make decisions based on the doc’s assessment. I was put on hold for 20 minutes then finally a phone was ringing and, you guessed it, it went to voicemail. When I called back about a half hour later I learned that the office SHUTS DOWN for TWO HOURS for lunch?!?!?!?! Omfg, I have never heard of this!! So, I waited until they reopened and asked to speak to an office manager and I explained once more. This time, and it was quite possibly the ONLY time, I got any cooperation from anyone in either this or the cardiologist’s office. This gal was very nice and understanding, apologized for the other idiot I had to speak with and she got me an appointment on Thursday instead of the following Monday. She apologized many times and I thanked her for her help.
Fast forward to Thursday when it was time to go to that appointment. We just barely made it and I discovered one thing that I do like about my mother’s medical building: valet parking!! When you’re running late and you’re not really sure where you’re going or where to park, valet parking saved me that day.
We had an appointment with a nurse practitioner since the doc had nothing available. She was very nice and thorough. At some point she asked me for a list of Mom’s medications. I had scribbled some down based on what the aide was giving my mother. It wasn’t intended to be a complete list, just one that I had started. When the nurse practitioner said there should have been a list of medications when Mom was released from the hospital, I began to feel sick. My heart sank to my stomach because I knew that the aide wasn’t following this list of medications. I had asked the aide how she knew which medications and how much to give and she said she called the pharmacy. At the time that sounded reasonable. I was not there and had no idea about a list of medications from the hospital so I accepted this reply. Except this list would have been from the rehab center since that was the last place my mother had been. So, the first thing I did when we got back to Mom’s apartment was to look for that list. Oh, it was easy enough to find. There was a plastic “patient’s belongings” bag on her bed that likely didn’t move in the 3 weeks since she was released from the rehab center. And what I learned next really made me heartsick. The aide had been giving my mother FOUR EXTRA medications than were on the list!!! I was beside myself with anger but I got to work readjusting my mother’s medications and jotted down those extra medications in case I needed that information.
Next I had arranged for an independent assessment by an RN for Saturday morning and I got even more education and just simple things that I hadn’t had time to think about. Things like “when was the last time you showered?” I was too busy with everything else to consider if my mother had bathed, not to mention I had no idea she needed a reminder. Mom looked quizzical and said with a question in her voice “yesterday?” Um, Mom, I have not seen you shower since I’ve been here….FIVE days ago!!! Okay, put that on my list of stuff I need to remind her of (and what the next aide would need to remind her of).
Then we got to that list of medications and I was ready with it. That nurse was fairly stern during this segment suggesting that all of us kids needed to know what she was taking and why. She went down the list asking me if I knew why she was taking this, that or the other thing. I felt like I was being scolded but I took it in stride, taking careful notes that I could share with my siblings of all the things none of us had thought of. When she got to the last one, Coumadin, she got very concerned and this is where more of the lack of compassion that I experienced was revealed. The note said “hold for 2 days, to be resumed by Dr. X(primary doc)”. Well, those 2 days passed a long time ago and the nurse practitioner at my mother’s primary doc’s office mentioned it(because it was in her file) but then dismissed it saying she needed to follow up with her cardiologist on that one. Well, this RN was VERY concerned that mom was not taking it and told me that I needed to contact her cardiologist THAT DAY!! That Mom has an irregular heartbeat, she even had me feel Mom’s pulse then feel mine and “did you notice a difference?” Then took her blood pressure sitting and took it again after she stood up and it dropped significantly. I still can’t get that look of concern on the RN’s face out of my mind. And why was she the only one concerned about it??
So, I set about attempting to get to the bottom of this Coumadin mystery, found the cardiologist’s phone number online and called it knowing I likely wouldn’t reach him as it was Saturday. I explained the situation to the person that answered and she said she would have the doc on call give me a call back. Ah, NO CALL BACK!!! But I had no way of knowing if someone actually did call back since Mom’s short term memory is basically nonexistent because I gave them my mother’s home phone number as surely they’d call before I had to leave for the airport to pick up Miss M 1.5 hours later, or so I thought. So, someone may have called and she just didn’t remember. I called the cardiologist again after returning from the airport and this time he called right back but somehow I missed the call and heard the most peculiar voicemail I think I’ve ever gotten from a medical, er, professional. I am paraphrasing, it went something like this: “I have no idea whether your mother should or should not be taking Coumadin. There’s a note here that she was taking it in April. You need to call her cardiologist or primary doc on Monday.” What happened to taking a message and having the doc call you back? I guess that doesn’t exist with Mom’s docs. I have such a better clinic with docs that actually care. So, make that the second person who couldn’t care less if she was taking this drug, the first being the nurse practitioner at Mom’s primary doc’s office. Or at least she wasn’t as concerned as the independent assessment RN.
I called the cardiologist’s office on Monday and was told that because of her INSURANCE I would need to speak with her primary doctor??? OMFG!!! I just went in one big circle!! At this point I was just so exasperated that I decided to leave it until she went to see her cardiologist on Thursday. I just plain did not know what to do! I couldn’t get anyone to care about this.
I did not get a chance to call Mom or her aide to find out what happened at that appointment until the following day, Friday. I spoke to the aide and asked her how the appointment went and was shocked to learn that my mother RESCHEDULED it!?!?!?!?!?! OMFG again!! THIS was the appointment I was most anxious to hear about and she decided to reschedule it because this was the day of her monthly lunch with her friends. While I understand that she needs this outing, she really needed to go to that appointment damnit!! But, I wasn’t there and I suppose I should have left instructions for the aide? Neither here nor there so now her follow-up appointment is THIS Thursday and I hope to God she goes.
Meanwhile, I have been worried sick about this stupid drug that likely landed her in the hospital in the first place based on the little I have read about it. But when the independent assessment nurse mentioned that Mom may have been on Coumadin to prevent blood clots, that was when I sat up and took notice. But NOBODY in either her primary doc or cardiologist’s offices gives a rat’s ass about it.
I last spoke to the cardiologist’s nurse last Friday attempting once again to get the answer from him. She told me that he was already gone for the day and wouldn’t be back until Monday. So, let me guess, she did NOT advise him that I had already called FIVE DAYS AGO. And now I had to wait THREE MORE DAYS to speak to him??? I asked her to please have him call me on Monday, which of course did NOT happen!!! That was yesterday….
I have been keeping my sister apprised of all of this as I have basically written my brother off. That’s another story for another diary (or not, we’ll see). Suffice it to say he has not been pulling his weight. So I called my sister yesterday thinking maybe another person asking about it might help?? She couldn’t call until nearly the end of the day and she got the stupid nurse’s voicemail and my sister actually DID talk to the actual doctor this morning!! So all he said was that he hadn’t seen her since April and he wouldn’t know if she should be taking it until he sees her. I asked my sister if she asked him why it took so long to learn that?!?!?? So now we have to make sure Mom goes to that appointment on Thursday.
I am appalled at the EXTREME lack of compassion just about everywhere I went with regard to my mother’s health and I just had to write it out. There is actually more, the above just leaves out a few more details. Is this the norm for elderly patients in Florida? Is it due to her crappy insurance (a popular HMO)? Does anyone else have experience with this and do I have any recourse whatsoever? I can say this much: I wouldn’t live in Florida if it was the last place on earth. No offense to my fellow Floridian Kossacks. This trip and ensuing follow-up (or lack thereof) with my mother’s doctors has left a very foul taste in my mouth.