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!

We're All In This Boat Together

Several times lately (twice in one recent trip to Wal-Mart), I have commiserated with others who are balancing the care of an elderly loved one with their own lives and responsibilities... and to some extent, the care of grandchildren or other little ones.  Some are dealing with similar issues to mine with my own grandmother - the challenges of aging, dementia, depression, and grief over the loss of peers. Just since the first of this year, five residents of my grandmother's ALF have passed away... and four of those were her close friends.  Another dear friend who lived across the street at the skilled care nursing facility died last week.

Losing five friends in less than five weeks is enough to drag anyone into a deep depression.  So it comes as no surprise that my grandmother has not thought clearly in recent weeks.  One of her table mates sunk into a deep depression over the loss of their dear friend, Ruth, who had been a next-door neighbor to this lady when they were still living at home.  I visited with the grand-daughter of this sweet lady one afternoon at Wal-Mart.  She said, "We could write a book!"  I told her... "My mom already has!"  I also shared a link to this blog, and she has e-mailed me to say she read several posts, and she felt better knowing that others were having similar experiences to hers with her own grandmother.

So I thought this would be a good time to mention my mom's book again.  It's called When Heads and Hearts Collide, and it chronicles much of the journey with my maternal grandparents, both of whom lived out their days in a skilled care nursing facility.  I have shared this book with several friends, and to a person, they have all said, "This could be me!"  So many of the themes of the book are universal among those caring for elderly loved ones.

I would also like to mention a phenomenon that is quite common among the elderly, and that is something called "Sundowning."  Information found at www.mayoclinic.com says that... "the term "sundowning"  refers to a state of confusion at the end of the day and into the night. Sundowning isn't a disease, but a symptom that often occurs in people with dementia, such as Alzheimer's disease. The cause isn't known."  The website lists several contributing factors:  fatigue, low lighting, increased shadows, and disruption of the body's "internal clock".

An article at AARP.org defines "Sundowners Syndrome" as "a cluster of signs and symptoms that occur as darkness falls. The onset can be abrupt and the behavior can have a paranoid quality to it. The person may have delusions they are being watched. Very often they become severely agitated and argumentative. It is common for them to lash out at their caregiver as well. There also may be pacing, wandering, cursing, yelling and hallucinations."

Not all people who "sundown" are what I would consider "elderly."  The husband of my mother's cousin is experiencing this condition in his early 70s, following chemotherapy for lung cancer and other medical procedures.  But the symptoms are very similar...and one of the worst for caregivers is agitation - often to the point of beligerence.  My mom's cousin said that during a recent episode, her husband required medication to calm him... and it took more than one person just to administer the medication.  This can be extremely trying for the caregivers and other loved ones who are standing helplessly nearby.

There are a couple of things that we should remember...

1. Fatigue may play a big role in "Sundowners Syndrome."  Ask yourself whether your loved one has been unusually stressed... perhaps hospitalized and out of the normal routine... or overly tired or run down from an illness or injury.
2. Don't take it personally... even if your loved one lashes out and says it's your fault.  Remember, your loved one is not himself/herself for whatever reason.  This behavior is not deliberate... nor something either one of you can necessarily fix.

I am continually surprised when I talk with others and discover how amazed they are to learn that others experience much the same thing.  There are a lot of you out there who are lonely and isolated... and this is really sad.  Look around when you visit your loved one.  Find someone who is visiting another resident and strike up a conversation.  See if maybe you can befriend each other.  If you know of someone who is dealing with much the same situation as yours, reach out to them.  We really are all in the same boat... and somehow, knowing that we aren't alone is of critical importance.

My  mom's book can help, too.  You can order it from her blog by clicking here.  Look on the left-hand sidebar for the order button.  And sometimes it helps to share your own story.  Please feel free to contact me and tell me about your experiences.  If you permit, I will publish some of them here.  Sharing your own frustrations and loneliness might be the turning point for someone else who is walking this journey... and maybe keep a few of us from jumping overboard!