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!

Does Anybody Really Know What Time it Is... Does Anybody Care?

When I took my grandmother to the cardiologist last month, I wrote about the mix-up in scheduling and how the doctor's office contacted my grandmother's ALF about her appointment. So when I arrived at Mam-ma's apartment to help her dress for her appointment some 45 minutes later, she was already sitting in the waiting room at the hospital, where she had been transported by the ALF driver.  The end result was a very long wait... and an exhausted grandmother.  I spoke to the nurse and a couple of other people and told them that I was the only person they should contact about my grandmother's appointments.  I gave them my mailing address and my telephone number.  I told the nurse, "The only phone call Mam-ma should get is the one to check her pacemaker by telephone."  She assured me this was handled.

Last week, while looking for two letter openers that Mam-ma insisted someone in the ALF had stolen (yes, we're back to that again... and yes, I found them very near where she normally keeps them), I found some mail that had been delivered to my grandmother at the ALF.  In it was a letter from the cardiologist's clinic telling Mam-ma that her pacemaker would be checked by phone in a couple of days - at 11:30 a.m.  I brought the letter home with me and tried to call the person listed on the letter as a point of contact.  I got an answering machine and left a message, asking her to please telephone me.  She has yet to call.

The day of the pacemaker check, I arrived at Mam-ma's appointment about 30 minutes early.  I wanted to get her device out of the drawer, help her get set up, and be sure we were ready at 11:30 a.m.  We were ready well before this time.  The call never came.  At 11:40, I began using my cell phone to try and contact someone to determine why we were not called.  After three phone calls, several "run-arounds" and returns to the switchboard and messages to three separate "in-boxes," I still had no answer.  However, in these messages, I had stated that "We went through this last month, and someone on your end arbitrarily decided that my grandmother did not need to have her pacemaker checked and canceled the call.  It's now almost noon and time for her lunch, so unless you call immediately, the box is going back in her drawer."  To my knowledge, no one has called, and it's been three days.  I left my cell number for call-backs... no one has called.

However, while waiting, I did find another letter... this one telling of a physical pacemaker check on February 15th at our local hospital.  I told Mam-ma, "We'll deal with this then.  Clearly your pacemaker is working just fine.  Don't worry about it."  We put her testing device back in it's box and returned it to her drawer, and I walked her to lunch.  I cannot understand why something so simple has to be so complicated... and why there is such a level of ineptness that is so widely accepted these days.  At this point, I am picking and choosing my battle, and a telephone pacemaker check was not high priority to me, so I'm letting it go.

The last two weeks, Mam-ma has seemed to make steady gains, although she doesn't show them much to me.  Last week she spent a few days in bed, for the most part... or so she said.  When I questioned the nurse, I discovered that on at least one of these days, she had zipped up and down the halls all day, gotten her hair done, and had a pedicure from the visiting podiatrist... none of which she volunteered on her own.  And indeed, for the most part, her speech does seem slightly better.  At least she can get out a few sentences from time to time.  And Mam-ma is eating well, according to a table-mate and friend who is much younger and has taken quite an interest in her.  So we are coasting at this point... aware that all could change in a heartbeat.

* * * * * * * * * * * * * * * * * * * *

Meanwhile, my brother-in-law and his wife visited last week, and my sister-in-law is now dealing with the aftermath of a fall suffered by her 95-year-old mother, which occurred shortly before Thanksgiving.  The fall resulted in an arm broken at the wrist and above the elbow, and now this lady is in a nursing home for rehab while the breaks heal.  A couple of weekends ago, she became belligerent, upset and confused... and later it was determined she had suffered a mild stroke.  My sister-in-law is realizing that it may not be feasible for her mother to return home after rehab.  We talked at length about her options.

During the conversation, my sister-in-law mentioned the mountain of paperwork.  "Yes... I know," I replied.  She mentioned a Do Not Resuscitate (DNR), and indicated that her mother does not have one - nor a Living Will.  I was astounded.  I told her that even my husband and I have Living Wills.  And I learned recently that DNR is not the same as a Living Will, so now both are in place for my grandmother.  Given that, I still must tell every doctor and nurse, "Polly is a DNR."  Apparently this information does not always carry through on the records, and my grandmother would not want to inadvertently be placed on life support.  My sister-in-law reasoned that her father had neither of these, and "they just asked us what we wanted to do, and we told them."  However, she lives nearly four hours away from her mother.  I pointed out that she very well may not be there when something happens to her mother - just as with the stroke - and by the time she arrives, life support could already be in place.

So my admonishment to everyone is... get these documents signed and in place NOW!  We never know what is going to happen, and this could save tremendous stress and heartache in the long run.

* * * * * * * * * * * * * * * * * * * *

Speaking of paperwork, I got the re-evaluation papers to complete for keeping my grandmother in the ALF with Medicare/Medicaid coverage.  In essence, everything I provided last year had to be provided again... the investigation goes back five years.  So while I sufficiently proved last year that she qualified, I had to prove it again this year.  This meant that I had to fill out five forms and provide copies of a current bank statement, proof of her pre-paid funeral plan, and documentation that we had surrendered her life insurance policy.  The only thing I did not have to provide this year was receipts to prove we "spent down" her assets to under $2000, because we did that last year, and she doesn't have any money left!  If she makes it to this time next year, I will have to do all of this again, so I kept copies of everything.  Just so you know... this is an annual event! 

In the scheme of things, I cannot complain. I am so grateful to have my grandmother at the ALF, and it wasn't nearly as bad or as time-consuming as what we went through last year.  Additionally, the case worker who was so horrific last year is no longer evaluating admits to the ALF in our county, because of the volume and severity of complaints lodged against her.  So I am told that this process should be fairly smooth sailing this time around with a competent caseworker.  Let's hope so!

* * * * * * * * * * * * * * * * * * * *

As I visited with my sister-in-law, she expressed several frustrations, all of which are normal - and common.  In particular, she said her mother was complaining that she was not happy and wanted to go home.  I advised my sister-in-law that her mother may never truly be happy again, and the best thing she can do is to make sure her mother is well cared for and do what is best for her - and for herself.  Unless she plans to move back in with her mother, she has to do what is going to make sense long-distance... and ensure that her mother's basic care is well-managed.  An ALF may make the most sense in that regard.  And should her mother be placed where other friends from her community reside, my sister-in-law might find that she is happier there than she will admit.

At the end of the day, I told my sister-in-law, "Your mother is no longer in control... and quite frankly, neither are you!  You must do what is best for all concerned and be satisfied with that."  Believe me... I'm learning this the hard way.  I told my husband the other day after talking with my grandmother, and then her nurse - and hearing two conflicting reports - that I feel fairly certain that Mam-ma is "playing" me... but I'm not sure whether she even realizes it any more.  There was plenty of time when she knew good and well what she was doing, but now I am not so sure... and it really doesn't matter.  The worst of it is that I don't know when she is truly in need, so that makes it hard to gauge how to respond.  For the most part, I just sound sympathetic, pat her hand and hug her, and tell her I'm sorry... and it will all be okay.  So far, that seems to be working fairly well.

I'm also learning to make time for myself... and make no apologies for doing so.  I get in my almost-daily workouts.  I've spent several days lately sewing... making clothing for little nieces and nephews.  I've even read a few books in recent months... something that had slid way down my list for a long time now.  I miss Timothy and his family terribly, and keeping busy helps.  And I am actually making more frequent visits to my grandmother's apartment.  The difference is in my attitude.  I do what I can while I am there, and I "leave it at the door."  I've advised my sister-in-law to do the same, just as I was advisedby someone this time last year... knowing full well it is far easier said than done.

I have come to the conclusion that the only salvation we have at this point is to stay diligent about paperwork and preparation... to try our darnedest to stay one step ahead of the bureaucrats and our loved ones... and to work hard at maintaining some semblance of a life - and preserving our own sanity.  Some days are better than others!

Fun With Bureaucracy...

My grandmother has a history of telling one person one thing, and another something else. So I was not surprised when my mom told me that Mam-ma was telling my cousins, "Debbie is taking me to look at a room at Southridge (the assisted living facility) next week." She had told me that she wanted to think about it, and that the room "was too small" and too dark. So I called her and asked, "Are you wanting to go look at Southridge?" She replied, "Well, I don't want to, but I think I better. I may not be happy there, but I'm not happy here, either." This was the first time she has flatly admitted to not being happy.

I told Mam-ma I would call and talk to the administrator and set up a time for us to take a tour. I called right away, and the administrator told me that there are now no fully-funded Medicaid rooms available. In the time since I first visited with her, she has "given them all out." I asked about a waiting list, and she said there was no one on the list at this point, but she didn't foresee any rooms coming available anytime soon. I asked to be placed on the list.

I explained to Mam-ma that we may have to move very quickly if a room comes open. There won't be time for her to waver back and forth... she will have to take a look and either say "Yes" or "No." The administrator did tell me that we could get one of the mid-sized rooms (which has 355 square feet vs. 248 sf for the fully funded room). This room currently costs the family an additional $500 per month, regardless of what Medicaid pays. That is in addition to any "incidental" expenses Mam-ma will have, which I am tallying at about $300 per month for such things as her medicine co-pay, getting her hair done, personal toiletries (toothpaste, mouthwash, soap, body lotion, etc.), toilet paper, candy, cookies and soft drinks, her telephone bill, and more. We have no guarantee that the $500 per month currently being charged might not rise at some point. Once we make the move and Mam-ma empties her house, where would she go if we deemed this to be too expensive?

So we are waiting for the fully funded room, and Mam-ma is managing. The lady in her Sunday School class who my mom felt would become a new "designated driver" did indeed drive Mam-ma to church last Sunday, since Mom was out of town. She also drove her to the Senior Center for lunch one day this week. And Mam-ma has not complained too loudly about being lonely or "looking at the four walls," although she does tell me often how much she misses going places with Ruby.

Last week Mam-ma told my mother that she had not seen anyone all day... except her deacon, the Meals on Wheels delivery person, and her Home Health aide! She is also continuing to forget to take her medication - or mixing it up some. She tells us she took it, but it's still in the compartments when I check on Fridays. Her response is always, "Well, I'm sorry." I've told her, "Don't apologize... just go take it!" This week, she said "I didn't take my noon medicine, because the box was empty. I may have taken more than one dose at a time." I told her to go to the Friday box and take the medicine in it, and I would fix it on Friday. She said, "There are three half tablets in Friday's box." I have pretty well decided she has dropped the container a couple of times and tried to replace the medicine herself... with mixed results.

Last week, Mam-ma called to tell me that her semi-annual pacemaker check had been set for Wednesday, December 8, at 1:15 at our local hospital. I made a note on the calendar. She said she got a letter about it. Then she called on Friday and said there was a telephone message and, "My pacemaker check has been changed to Friday, December 10, at 11:30 a.m. - in Searcy." (30 miles away) I called the number for the pacemaker technician, and she said that she could not explain the phone message about December 10th, but the appointment was for Wednesday, the 8th, at 1:15 - and it was at our local hospital.

Mam-ma was to have her semi-annual checkup with the cardiologist this past Wednesday at noon - in Searcy. As my husband and I dressed and got ready to make the trip, I decided that I should call and confirm the appointment. Now, I had done this two weeks ago when we went for an echo cardiogram. But nonetheless, I made a call. The receptionist said, "No, that appointment has been rescheduled." I said, "You have got to be kidding." She said... "Well... let me check. I'll connect you to the scheduler." She put me through to a voice mail machine for another cardiologist. I called again. She apologized and tried a 2nd time... this time reaching the voice mail for yet another cardiologist. I called a 3rd time. I explained that we were about to walk out the door, and we really needed to know about this.

The receptionist said, "Well, I know your appointment is not today, because the doctor is out this week!" She said she would check on things, and the next person I spoke with told me that Mam-ma's appointment was now scheduled for Friday, December 10th, at 11:30 a.m. It was all coming together. She said, "We spoke with you on November 15th." I assured her no one had spoken with me. She said, "And we sent you a letter." I told her if Mam-ma got a letter about the appointment change, she had not mentioned it.

I also told the girl that we already had appointments for that Friday, and she cut me off and said, "I don't mean to interrupt you, but we are booked solid through March. That is the only appointment we have available until then." I wanted to scream, "My grandmother could be DEAD by March - she is 98 years old!" But instead, I told her "Fine... we'll take it and I'll reschedule her other appointments." She said, "Now if that won't work, we could talk to the nurse and maybe work her in some other day." I know what that means... sitting for hours on end in the waiting area for a spare minute. Mam-ma is not up to that. Just going to the beauty shop tires her these days. So I assured the scheduler we would be there on the 10th.

As I had done with the pacemaker tech, I asked this person to make me the point of contact for phone messages and letters about appointments. She reviewed my address and phone number and said, "That's where we send everything already." I told her no... I had never gotten any of the messages... they all go to my grandmother. She said she would make the changes on Mam-ma's records... we will see.

With an unplanned day suddenly available, I decided to tackle enrolling Mam-ma in a new Medicare Part D Prescription Drug plan for 2011. You would think that after 5 years, I would have this down pat... NOT! I still had to call the Medicare office in Dallas to make sure I was understanding the information correctly... would someone with extra help be required to pay premiums and deductibles? The answer was no... and ultimately, my choice came down to finding the plan that covered all but one of Mam-ma's meds (an anti-anxiety medication that has never been covered) and had the lowest co-pay.

My frustration came not from the process itself... and certainly not from the extremely helpful Medicare rep, Anna. The problem resided in the Medicare.gov website. More times than I can count, the site "timed out" on me, and I had to go back and re-enter my "code" to access my drug list and start the process again. I was taking time to compare plans... or talk with Anna on the phone... or look over the details of a particular plan. I would sometimes get a screen that "you are about to be timed out," but more often, when I tried to return to my list of plans, I had to start almost completely over. So even though I feel like I understand this process about as well as anyone, it still took more than two hours.

But we have Mam-ma enrolled, and I think we have her appointments straightened out... although I will be calling a few days in advance this time. What if we had taken off from jobs to drive her to Searcy? I have to believe that the staff knew 2 weeks ago when were in the doctor's office that he would be "out of the office" this week. Maybe not... but it's highly suspicious to me.

All of this makes me wonder... what do people do who have no one to help them? Mam-ma gets things so confused these days, and were she still able to drive, I seriously doubt she would think to confirm an appointment before driving 30 miles for it.

In fact, we've done this ourselves... early on in our caregiving. We drove to Searcy one day for the echo cardiogram, and no one had called to tell us that the "tech" no longer performed these on that particular day of the week. After Mam-ma threw a little fit and told them we had driven 30 miles, they were able to locate a "tech" who happened to be shopping in town, and she drove over and did the 15-minute test. I learned then to always call and confirm... and usually I call the day before an appointment. But having just been there 15 days earlier and confirmed, I let it get by me. And I realize now that Mam-ma confused the pacemaker check info with the rescheduling info, so in some ways, it was as much our fault as theirs in this instance.

So what does this all mean at this point? We are just taking things one day at a time. Mam-ma seems to have made a better adjustment to not using her stove for cooking than I would have ever anticipated. She has not fared so well with the fact that Ruby can no longer drive her around. Someone asked me last week how she was doing with this, and I said, "Not well. I have seen a noticeable decline in Mam-ma since the wreck." I believe this is mostly mental... a mindset... but it's there nonetheless. She seems defeated, tired, and much older in recent weeks. My hope is that she will remain healthy enough until a room does come vacant for her at the assisted living facility. My goal is still to avoid the nursing home.

This is all pretty much out of my hands at this point, and I've come to terms with this fact. We will all be gathering for Thanksgiving next week at my mom's, and I am looking forward to spending time with my family and enjoying this day with my grandmother and Timothy... watching the generations interact, and making memories in the process.

Each day is a gift at this point... and for the moment, Mam-ma seems to have mellowed a bit in her temperament. Last night when I told her to be watching for her new prescription drug coverage info in the mail, she started to cry and said, "I don't know how I'll ever pay you for all you do for me." I told her, "Your my grandmother... you don't have to." She persisted, and I said, "Look, if you had to pay me, you couldn't afford me, so just be glad you're my grandmother!" We both laughed, and she moved on to another topic.

I am grateful that I am in a position to help her... and I do often wonder how on earth other people manage. My husband says half the clients on his Meals on Wheels route are nowhere near as well off and able as my grandmother... and many don't have anyone to see about them, save maybe a Home Health aide a few mornings a week. Some don't even have that.

Our culture has not kept up with the issues that face aging Americans. And as a gerontologist pointed out to me last summer, much of this is because Americans now live far longer than they once did. People like to talk about how "We used to keep Mom and Dad at home and take care of them until they died." Well, Mom and Dad only lived to their mid-fifties. We honestly are not equipped, in many circumstances, to care for parents and grandparents who live well into their eighties and nineties. I know there are people who are working to bridge the gap and improve things, but some days, the process seems pretty darn slow. And when you factor in the bureaucracy and the bumbled schedules and websites that are not user friendly, it's hard to see progress.

In the words of Scarlett O'Hara... "Tomorrow is another day..." and for me, it's "beauty shop/errand day"... wish me luck!

Here We Go Again With Medicare!

On November 5, 2009, my grandmother celebrated her 97th birthday. She is in excellent health and still lives alone in her own home. She is able to do this because of the vast assistance from her family and various agencies, including our county's Home Health department, assistance with utility bills twice a year, Medicare, Medicaid, and her monthly Social Security pension of $759. I serve as her Durable Power of Attorney and handle all of her business transactions for her.

When the Medicare Part D Prescription Drug Plan was enacted in the fall of 2006, I selected what I felt was the best plan for my grandmother. Shortly after January 1, 2007, I discovered that Medicare had "switched" my grandmother to another plan without my knowledge - a plan that did not cover her prescription medications. It took some work and the assistance of a very helpful Medicare official in Dallas, but I was able to get my grandmother switched back to CignatureRx. This was not the end of the story... there were continual struggles with CignatureRx, because drugs they said were covered in 2006 seemed to mysteriously be "no longer covered" as the year progressed.

In 2007, I learned that CignatureRx was no longer a good fit for my grandmother, due to lack of coverage and the addition of premiums and deductibles. So I repeated the process to search for a new provider, and I chose Humana. I have to say, the folks at Humana were wonderful and very customer-friendly. They tried to tell me that two of my grandmother's most expensive medications were not going to be covered, but after hearing from her physician, they gave her a "lifetime waiver" on those drugs - she could receive these drugs for the initially-agreed-upon co-pay. I thought I was set! I learned in November 2008 that "lifetime waiver" was only good for one year - that in the insurance company's terminology, a "lifetime" equals one year.

Medicare employees confirmed to me in November 2008 that most seniors will have to re-apply for coverage EVERY SINGLE YEAR, due to changes in formularies, premiums, deductibles, and more. So once again, I am searching for an insurance provider that will adequately cover my grandmother's seven daily prescription drugs.
I know this is lengthy, but believe me, I have condensed it greatly. If you were to read my blog posts of February 2006 and November 2008, you would see some of the ordeal that has transpired:

• http://firecrackerbaby57.blogspot.com/2006/02/medicarerx-drug-plan-is-fiasco.html
• http://firecrackerbaby57.blogspot.com/2006/02/keep-your-fingers-crossed_10.html
• http://firecrackerbaby57.blogspot.com/2006/02/its-over-hopefully.html
• http://delisandwich.blogspot.com/2008/11/if-its-november-it-must-be-time-for-new.html

Aside from the obvious concerns over how this is handled... here are my issues with this plan. I am a 52-year-old former elementary school teacher with a MS in Education. My husband and I founded a magazine and publishing business. I know how to navigate "red tape" and make appropriate contacts, yet I still struggled with this one. If getting prescription drug coverage is this difficult for me, imagine what it would be like for seniors trying to do it themselves. They get through two pushes of the menu buttons (and there are dozens!) and they give up and go away. I figure this is the hope of many of these bureaucracies. As concisely as I can make it:

• Medicare Part D is another example of how convoluted our health care system is.* The average senior cannot figure this out on his/her own, and I seriously doubt most have advocates to do this for them. Even four years into this, I still have to call my Medicare connection in Dallas for clarification and confirmation. I got this contact because initially I complained loudly to everyone from then Governor Mike Huckabee to Congressman Marion Berry, both of my senators, and others. Most seniors won't have the resources - or patience - to do this. (See my first blog post link for info on the responses - or lack thereof - I received!)
  
• I try not to let my grandmother know how much is involved in getting this coverage each year; however, sometimes she is required to verify information on the phone for representatives, etc., so she does know there is work involved. One day she said, "I'll just not take those medicines." I quickly told her this was not an option! But I fear that this is indeed what many seniors are doing... rather than fight the phone menus, comparing plans, and more, they give up and forego needed medications. This system is designed to shoot them down quickly and frustrate the seniors into quick defeat.
  
• The Medicare Part D Prescription Drug system is not equitable. So far, because of her meager "income," my grandmother has qualified for a waiver on premiums and deductibles on certain plans. Many others do not, and those premiums and deductibles add up quickly for older Americans on a fixed income. And what happens when the plans get so out of whack that my grandmother and others like her no longer qualify for waivers on these fees, as well?


• The "donut hole" is ridiculous. The mother of my mom's neighbor had to have an extremely potent antibiotic last January. The doctor could have given her injections, which would have been covered somehow by the insurance provider as a "medical procedure" perhaps. Instead, he prescribed oral medication - to the tune of about $3000 per month. This meant that this lady was thrown into the "donut hole" in February! I have a sick feeling this is in no way an isolated instance. Yes, it was a mistake made by the physician, but it shouldn't be possible. Physicians need to be treating patients, not keeping up with which forms of certain drugs are covered by insurance companies - and how!

Thankfully, I am now semi-retired and have more time to devote to keeping my grandmother in the necessary assistance to sustain her in her own home. We've done three stints in nursing homes for rehab following injuries and illness, and that is not where she needs - or wants - to be. And frankly, keeping her at home is far more economical for the federal government, in terms of capital outlay for her care.

The bottom line for me is that this system is not working for our seniors, and it's almost as if - as a nation - we don't care! As I understand it, presently the government cannot regulate premiums, deductibles, and formularies for the pharmaceutical companies. I believe it is time to revisit this situation... and maybe this is where the public option could help... something that seniors could choose that would cover their medications without imposing these fees and restrictions. I wholeheartedly support the President's health plan, and I believe that, sadly, this fiasco with Part D coverage is only one small part of a much bigger problem. But it is one that desperately needs to be addressed.