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!