Thursday, November 18, 2010

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 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!

Monday, November 8, 2010

Voting, Life Alerts, and Parties... All in the Same Week!

A lot has happened in the last 10 days. The Thursday before Halloween, we hosted my family for a chili supper. We invited my mom and her husband, my sister and her family (including Timothy, of course), Mam-ma Polly, my cousin and her two children, their spouses and two children. There were seventeen of us in all. We had a great time, and Timothy got to play with his two cousins, Owen and Olivia, which was fantastic. Mam-ma so enjoyed watching the children play and dance to NickJr. shows on television.

Mam-ma and Timothy

Timothy and his cousin Olivia.

Owen and Timothy

Mam-ma and my cousin watch the boys dance to a NickJr show.

The next day, everything went well when we went to the beauty shop and ran errands... until I got home. My phone rang around 4:30 p.m. - Mam-ma. "Go look in your car and see if my life alert button is there. My pants pockets are shallow, and it fell out somewhere." I looked. The life alert was not in my car. Mam-ma will not wear this device around her neck - she insists it bothers her. She had called the beauty shop, and one of the hairdressers had scoured the building - and even the parking lot. No button! I told Mam-ma not to worry... it would turn up. Frankly, I'm not sure how long it had been missing.

Mam-ma did worry... and she searched every inch of her house and stewed over the missing device all night. When I called her at 7:00 p.m. Friday night to see if she took her night-time medicine, she had not eaten - she had searched for the device since 4:30. I told her to STOP... to eat and take her medicine, and quit worrying. She said, "Well, I worry about everything these days." I gently suggested she try to stop worrying. Saturday morning, she called the company and reported that she had lost her life alert button and needed a new one. The company delivered her new device on Monday. The cost was $30.

Tuesday, Greg and I drove Mam-ma to her cardiologist's office, 30 miles away, for an echo cardiogram in preparation for her 6-month check-up in a couple of weeks. We stopped and had lunch at a restaurant in town, then drove to her appointment. When we returned, we took Mam-ma to a church in her neighborhood to vote in the mid-term election. I had to read the names to her on the voting machine, but she cast her own votes. While Mam-ma was voting, we visited with some of her peers... three more folks in their 90s. It was a humbling experience to see these little people make such a monumental effort to participate in the election process.

"MawMac" - my birthday buddy

Funny story about voting... one of the other "seniors" voting was my birthday buddy, who I call "MawMac."  She is 91, and we share the same birthday.  The volunteer got MawMac set up on a machine to vote, and I was standing with Mam-ma.  The volunteer left the room.  MawMac's daughter, Marsha, had said she was going to let her mother do her own voting.  Everything was going well, when I heard MawMac say, "No! No! No!  I don't want that.  Oh, WHY did it do that?  That's not what I want!"  I said, "MawMac, hold on... I'll come help you in a minute when we finish."  Mam-ma finished and walked back out to wait with Greg, and I walked over to MawMac's area.  She had advanced to a screen with a lot of text and only a couple of voting boxes, and I said, "This is the page to vote for unopposed candidates and start voting on the issues."  "OH!" she said, "Well, I DO want to do that!" 

I showed her where the section was for the unopposed, and then I pointed to the first issue up for vote.  She said, "I do want to vote on these, but I want to read them first!"  There were four long issues, and I said, "Let me get Marsha."  I walked out into the common area and told MawMac's daughter that she wanted to read the issues (I learned later she had already reviewed them at home), and she was on her own!  The daughter rolled her eyes and went into the voting room to see if she could help.

Mam-ma always enjoys having Greg around, and she was on her best behavior Tuesday. She insisted on buying lunch, and she was kind and sweet and cooperative all day. She really didn't complain a single time about anything.  We always get a "history lesson" on that drive as we travel through the country back roads where she lived as a child and young woman.

The "Birthday Girl!"
Friday was Mam-ma's 98th birthday. My mom hosted a party for her and the other ladies in her Sunday School class after Mam-ma got her hair done. Mom said she underestimated the ladies... she had set out her glass snack trays and cups for cake and punch, nuts and mints, thinking the ladies could fill their plates and step out onto the sun porch to eat. The median age of this group was probably 90, and these ladies were not able to navigate steps and carry glass trays and cups. So Mom asked my sister and Greg to place the cake and punch on the table for the ladies and help them get seated, while I took photos.

All of the ladies enjoyed sitting around my mother's dining table and having refreshments while visiting. They even stopped after everyone was seated, held hands, and "said a blessing," led by their Sunday School teacher, who is quite a bit younger than the class members. She is a wonderful lady who cares deeply for these senior matriarchs of the church... and it shows.

Mam-ma and her friend, Ruby
Mam-ma got cards and more time with Timothy, and the accolades of her friends for making it to 98. Someone said, "Polly, you have to hang on to 100 now," and Mam-ma replied, "I'm not sure I can." This was a humbling day for me. I've grown up with many of these ladies... and many more in Mam-ma's class have already gone to be with Jesus. I honestly don't know how many of these ladies will be with us next November 5th. They really enjoyed the party... and they LOVED having a tall, handsome man (Greg) help them get seated at the table and out to their cars afterward.

Before we left for the beauty shop, Mam-ma had asked me to hang her electric blanket outside on the clothesline to air. When we got home, I got the blanket off the line and told her I would hook it up for her. She drug herself into the house, totally exhausted from the activities and excitement of this day. She made an attempt to help me with the blanket, but I insisted she sit in a chair and rest, and she did not protest at all. She was spent! I hooked up her blanket and turned it on for her... the evening was cooling off quickly, and I knew she would want a warm, snug bed to get into very soon.

Saturday evening, I called to remind Mam-ma to take her medicine. I asked if she had slept well, and she said, "Well, I was warm!" Then she said she turned her blanket off when she went to bed. I asked her why she did that, and she said, "Oh, I never leave my blanket on all night... you know, that takes electricity and costs money!" I fussed at her and told her to leave her blanket on... it doesn't take that much energy.

Then she totally surprised me and said, "I've been thinking about moving to Southridge (the assisted living facility). What do you think?" I didn't know what to say... I told her, "It doesn't matter what I think... it's totally your decision." She said, "Well, now that I can't ride with Ruby, I am just stuck here. I've been thinking, maybe I should move." We talked about the positives... being with people, having everything covered, being safe and cared for if we have bad weather this winter, and more. I pointed out the negatives... "It's a small room... probably the size of your living room. You can't take everything with you... we'll have to pare down your clothes and things." She replied that "I don't need a big room. That's all I need." She seemed to understand all I was telling her.

I assured her that I would handle everything for her, if she chose to move... and all she would have to worry about was picking out what to take with her. I would make her room nice and comfortable, handle the moving, and handle disposing of the other things afterward. She said she was going to think about it. I offered to take her to the facility to look at a room and see firsthand what it was like. She said she would consider that, as well. Mom's husband rang the doorbell... he had come to change Mam-ma's clocks for her... and she said she'd give this some thought and hung up. I learned later that she discussed Southridge with Mom's husband... the advantages, as well as how hard it would be to make the change.

Sunday, my mom took Mam-ma to church and back, and she never mentioned the assisted living facility. That night when I phoned her to make sure she took her evening meds, she didn't mention it. Finally, I asked... "Have you decided if you want to go tour Southridge?" She replied... "Well, I've thought about it, and that room is gonna be really small." I agreed, but I suggested she go check it out in person to decide for sure. She asked, "Is the room dark?" I assured her that the room I previewed was nice and bright, with one wall of south-facing windows. I can't guarantee she would get a room in that wing, but I feel sure all rooms are light and bright.

I am hoping she will decide to go this week and preview the facility. This is not going to be quick... or easy. And I realize that for every "pro" about this choice, there will be a "con"... and in the end, this move might even mean more work for me. For one thing, this facility is right down the road from my house, so Mam-ma may feel she has more ready access to me and I should drop everything and run when she beckons me. Then again, she may become so busy and involved with fellow residents that she doesn't have time for me... and she hasn't moved yet!

So changes are in the air. I think Mam-ma is working her way into this move... as well she should. The clock is ticking, somewhat, but there is still time for her to adjust to this concept. I'm praying for a good outcome - not necessarily the move itself, because this is not my "call" - one that makes sense for Mam-ma and will be right for her. An elderly cousin told me last month that "anyone in their right mind would wonder why she isn't there already," and I know he is right. But I also know that the slightest nudge one way or the other from me will result in future claims that "Debbie made me do this," and at this point, Mam-ma is still able to make this choice for herself.

I'm "resting in the Lord" for now... trusting His timing and influence, knowing that my grandmother is on her knees, too... if only figuratively. The next few weeks may be busy and challenging, but we'll get through them. I realized after Friday that the clock is ticking for my grandmother and her peers... and I'm trying to "chill out" and take her antics in stride... and savor the time I have left with her this side of heaven. Some days are easier than others... but every day at this point is a treasure - even those that test my patience!