Thursday, February 16, 2012

You Messed With The Wrong Bulldog!

Every six months, my grandmother visits her cardiologist.  Every three months, her pacemaker is checked by nurses who visit our local hospital.  In between THOSE visits, her pacemaker is checked by telephone, using a device she keeps at her apartment. The "heart clinic" has always sent letters to remind us of appointments... and they were sent to my address.  This worked great, because I could make notes in my calendar - and on Mam-ma's. They also called the day before to remind us of the appointments.  The only "fly in this ointment" was when the tech mistakenly called my house a few times for the telephone check, and I had to explain that he was to call my grandmother at her apartment instead.

This "system" worked fairly well... until December 2011.  Mam-ma was scheduled for an appointment with her cardiologist on December 14th - at our local hospital, where he maintains an out-patient clinic.  Since Mam-ma was hospitalized from Dec. 6-12, I telephoned the clinic nurse and told her that I was not going to bring Mam-ma back to the hospital for an exam on the 14th.  In fact, when I talked with the  nurse, I wasn't even sure that Mam-ma would be discharged from the hospital by the 14th, and we agreed that the doctor could walk upstairs and see her, should she still be a patient.

On December 15, a nurse spoke with me by telephone and said, "If we can't get your grandmother to the hospital, let's at least do a telephone check of her pacemaker."  I agreed to this, and I got the nurse at the ALF to help Mam-ma get her device out of the drawer and hook it all up at the appointed time.  The call to check the pacemaker never came.  When I made some calls to inquire, a tech said, "Oh, I saw that on the schedule... and her scheduled appointment on the 14th, and I decided that since she had just seen the doctor, this must be a mistake - so I didn't call."

We rescheduled my grandmother for a visit to the cardiologist in January, and as I described in a previous post, the "heart clinic" notified the ALF instead of me, for some reason, and when I went to get my grandmother for her appointment, she had already been transported to the hospital with another resident - an hour early, so they could ride together.  I arrived at the hospital and thought I got it all straightened out... all correspondence was to come to me... the phone calls for pacemaker checks went to Mam-ma at her apartment.

So a couple of weeks ago, I was looking for something in Mam-ma's apartment that she insisted was "stolen" (a recurring theme with her these days), and I discovered TWO letters notifying Mam-ma of upcoming appointments... one for a telephone check of her pacemaker, and another for an in-person check.  I noted the dates on Mam-ma's calendar, then brought the letters home and made notes on my calendar.  On the day we were to have the phone check (January 26th), I arrived at Mam-ma's apartment 30 minutes early, got her all hooked up to the machine... and the phone call never came.  I made several calls to nurses/techs/the clinic itself, and I could never get anyone in person.  I left many messages... to date, no one has returned my phone calls.

I let the ALF know that we had an upcoming appointment for an in-person pacemaker check, and that I would personally take Mam-ma, because I wanted to try to straighten out this confusion. Yesterday was "the day."  Bless her heart, Mam-ma has been so excited about "seeing the doctor" that she has called me nearly every day for over a week... "Is today the day?  Aren't you coming to get me?  I'm dressed and ready!"  "No, Mam-ma... it's NEXT week.  I'll let you know in plenty of time."  I didn't even address with her that we were not seeing a doctor... this was an "in-and-out" pacemaker check.

I did not get any phone call the day before to remind me of the appointment, and I wondered as I drove to the ALF... "Will we get to the clinic and discover that the appointment was cancelled?"  Mam-ma was dressed and ready - hair combed, lipstick applied - she looked like a million bucks and was clearly excited.  It was a cold, raw, rainy day, but she was not deterred.  So we drove to the hospital for the appointment.

We waited only a few minutes in the waiting area before a very sweet nurse ushered us back to an exam room.  She attached the electrodes to Mam-ma's chest as I explained that we had a mix-up about who to contact.  She looked on her computer and discovered that the ALF was the "point of contact" - both address and phone number. I was listed as an "emergency number."  We were in the middle of changing all of this, when another nurse entered the room.  She heard me say to Nurse #1, "I spoke with someone named XYZ, but she never called me back."  Nurse #2 said, "I'm XYZ... and I did call!  I spoke with someone yesterday."  I asked who she spoke with, and she glanced at the computer screen and said, "It was you... I recognize the name."  "No, you didn't speak with me," I replied, "and my husband would have told me if you had phoned our house."  "I know I talked with you," she replied, her voice getting louder and more agitated... "we'll just look in the computer... I make notes on everything.  But I know I called you... I always return phone calls."

The other nurse completed the pacemaker check and changing the info in the computer.  My little grandmother sat quietly in her chair.  I tried to nicely explain to Nurse #2 that we had had three appointments since the first of December... and all of the notifications had gone to the ALF and caused major confusion... and two of the appointments never materialized.  She was still insisting, "I called you, I know I did."  Then she got her computer screen up, and she said, "HERE... I called you... December 15th... I KNEW I called you."

I just looked at her, and said, "You very well may have called me on December 15th, but we are talking about YESTERDAY!  We've had three appointments since that date."  "But you agree... I did call you, right?  Because I always return phone calls," she insisted  I just laughed and told her, "We were talking about yesterday - and January 26th, when the tech never phoned for a pacemaker check and no one returned my calls.  Yes, I probably did talk to you on December 15th, but we're talking about who was called yesterday."  Then she looked at Nurse #1 and said rather curtly, "You need to go ahead and complete the exam... we can work this out later...we have other patients waiting!"

Nurse #2 turned to me and said, "I can tell that you are upset... and I am upset that YOU are upset!"  I told her, "I am not upset... I just want to get the notifications, because my grandmother cannot read her mail nor remember to give it to me, and the ALF does not let me know when you call them about appointments - they just handle them, and that's causing confusion."  I felt like I was in a bad dream... or a three-ring circus.  FINALLY, Nurse #1 sweetly said, "I think the problem is that somehow the ALF got on the records as the point of contact.  I've changed that to your information, and deleted the ALF, so we should be all set."  I smiled and thanked her for all of her help.

Nurse #2 was still insisting that she always returns phone calls, and I did not call her.  I opened the call log on my phone for January 26th, and we went through the numbers... both nurses said none of them belonged to Nurse #2.  However, she gave me her number and said, "If this ever happens again, call me, and I will personally do the telephone check."  I entered her number into my phone.

I turned to Nurse #1 and inquired about the pacemaker check, which was why we were there.  She told me all was well, and the battery was good for another 3+ years.  She then said to Mam-ma, "You are lucky to have someone who cares so much about you.  Most people just let the facility handle these things, and we never see a family member."  Mam-ma nodded.  Nurse #1 turned to me and said, "You are sweet to care so much for your grandmother."  "She's worth it," I replied... "and I know you two think I am something of a bulldog, but I have to stay on top of this."  They assured me they didn't feel that way, and Nurse #2 even gave me a hug and said, "I'm sorry for upsetting you."  I told her again that she did NOT upset me... and I was sorry if I had confused her about the phone dates.

The bottom line is that we hopefully have this all straight now... and Nurse #2 must have been having a very bad day.  She burst into the room, got into the middle of a conversation, and went ballistic.  I thought I might need a pacemaker before it was all said and done!  I have a sneaking suspicion that she reacted as she did because this has happened before... and she was clearly defensive.  If there had not been such a pattern of ineptness in the first place, there would have been no need for such a confrontation.

Oh... and the telephone check on January 26th that never happened?  The "notes" showed that the tech DID phone the ALF later that afternoon and "rescheduled" for 2:00 p.m.  When he phoned at 2:00 p.m., the notes say the nurse told him that there was a staff meeting, and nobody was available to help Mam-ma with the test.  All of this was news to me. I didn't mention this to the nurse at the ALF... it wasn't her fault, and I'm sure that they do handle this sort of thing regularly for many of their patients.  The point is... we were there at 11:00 a.m. for an 11:30 telephone appointment that never happened, which is on the "heart clinic" staff, not the ALF nurses!

On the upside, Mam-ma was thrilled and told the aides at the ALF that she had had a good "doctor visit," and that "he just wants to see me ever once in a while!"  I went to her mailbox and retrieved mail that had accumulated there for several days, including several Valentines.  I made a mental note to check her mail more clearly ... and hopefully this won't be an issue again for awhile.

I share all of this to demonstrate, sadly, just how convoluted things can get when it comes to medical care and paperwork...and managing the care of loved ones - especially the elderly.  There is no reason this has to be so complicated... but my grandmother can no longer manage any of this, so someone has to advocate for her... and that "someone" is ME!  As a nurse friend at the hospital told me back in December, "You are her only advocate, and do not apologize... if you don't see about these things, nobody will."  My friend who is the hospital administrator disagrees with this comment, because he says "Hopefully we are doing a good job of advocating for our patients."  But I am here to tell you... things fall through the cracks left and right... it's simply a fact.  And we know your loved ones better than the doctors and nurses.  So it's OUR JOB to stay on top of things.  And it we have to be a bulldog to get the job done, so be it!


Kaye Swain - SandwichINK for the Sandwich Generation said...

What an interesting article for all of us in the Sandwich Generation involved in caring for the elderly parents and grandparents in our lives - thank you! But oh my! How frustrating. And sounds like you did a great job of keeping your cool in the midst of it all. You are so right that we have to stay on top of things. I've run into similar situations and you are correct that thing do easily "fall through the gaps." But keeping calm (or fairly calm :) ), and staying focused on kindness and everyone working together to help our senior parents and grandparents is so vital.

One thing I've learned to do is every doctor and medical office I go to, I add a note to the main paper stating that I am the point of contact with my cell phone. I do this even if I fill out the HIPPA paperwork stating that. Since they are two slips of paper, it's so easy to be separated.

And I keep a copy of my power of attorney with me always - even when the doctor's office assures me it's in the computer that the hospital also uses. We've already learned that does NOT always work right either.

So as you wisely point out, one of the best tips for taking care of the elderly parents and relatives we love is to be proactive to stay on top of things - it definitely pays off big time! :)

Debbie Robus said...

Thank you, Kaye... I keep a "data sheet" with all of my grandmother's info/meds/allergies/medical history, etc. in my wallet, but I do not carry the POA, nor had it occurred to me to present contact info each time. GREAT suggestions!

I was flabbergasted to find out during my grandmother's last hospital stay that DNR orders to not always carry through from the ER to the floor, etc. So I now write on the "white board," that "Polly is a DNR!" Thanks again for your comments and suggestions! Much appreciated!