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.

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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.

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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!

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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!

Another Empty Chair at the Table

Last week when I took my grandmother to the doctor, she told me, "Ruth is sick."  Ruth was my third-grade teacher.  She and my grandmother became friends in the late 1950s/early 1960s.  They were in B&PW Club together - both "business women" in an era when there weren't very many women who worked outside the home.  Ruth had moved to the ALF several years ago, and when Mam-ma moved in, she was seated at a table in the dining area with Ruth and another friend, Ms. Evelyn.  I spoke to Ruth and Evelyn on January 2nd when I walked Mam-ma to lunch.  Both seemed well.


Ms. Evelyn, Mam-ma Polly, and my first grade
teacher, Ms. Ruth

By Thursday, January 5th, Mam-ma was telling me that Ruth was sick.  She sat at the table that evening for dinner... but she did not eat.  The next day, she was admitted to the hospital, where she died Monday morning from pneumonia.  Ruth would have been 97 on June 16th.  Mam-ma and Ms. Evelyn are heartsick.  Evelyn and Ruth were "kitty-cornered" neighbors for decades before both moving to the ALF.  Evelyn has told me over and over this week how long she and Ruth were friends - and how much she will miss her.

Monday, I went to the ALF to check on Mam-ma, and we talked at length about dying.  She is so ready - and quite frankly, she is jealous that Ruth got the jump on her!  She said, "I prayed this morning about this.  I told the LORD I'm ready to go." Then she managed to get out... "Death... frightens... me."  I asked, "Are you afraid to die?"  No, she told me... and finally I managed to discern that she is afraid of lingering... becoming comatose or "like a vegetable."  She also managed to express that she worries about those who are left.  I assured her that we will be fine... we will manage... and without her to lean on, some might even have to step up to the plate and do better!

While we talked, I realized that the last few times I have visited, Mam-ma's attire has been a little strange.  January 2nd, she had on summer white pants and a light-colored shirt. Many other visits, she has been wearing the same drab olive green pants and a multi-colored blouse.  So I went through her closet and organized some "outfits".  I asked her why she wore the same thing all the time, and she replied, blankly, "I don't know."  My grandmother has beautiful clothes.  Now that she has lost weight, she fits into all of them well.  There is no reason for her to wear the same thing every day.  Either the aides are not paying attention - or she chooses to wear the same outfit.  I tend to think it is the latter. 

So, just as I selected Timothy's daily attire, I grouped ensembles for Mam-ma - pants, shirts and a jacket.  When I returned yesterday, I partitioned her closet, leaving notes on the summer things that said, "Summer Clothes - Do Not Wear Until After March 2012".  The outfits for this winter, I labeled... "Please Help Polly Dress in These Outfits for Winter.  Thank You!"  So far, Polly has worn a new outfit each day this week. As one staff member put it, "There are people here who get paid to do laundry - there is no reason she can't wear a clean outfit every single day."  It may not seem like much, but I think it makes a difference - not only in my grandmother's appearance, but also in her attitude.  Change is good...even if it's merely your clothing!

I've been visiting more often and spending more time with my grandmother this last week or two.  One day she is up and the next she is down.  She is staying in her room more... and sleeping a lot. She is bored and depressed.  My mother is traveling, and she said she hesitates to phone, because Mam-ma has so much trouble talking on the telephone - and even getting to it to answer.  She said she would write a letter.  However, I've been having to read Mam-ma's mail to her this week, so Mom is going to e-mail the letter to me, and I will read it to her.  Once again, I see a similarity - we read to Timothy, and now we read to Mam-ma.

I told my grandmother that I have no idea when the LORD will call her home.  I know it won't be until she has accomplished all she is responsible for here... and that may be something as seemingly small as smiling at an aide or working through the grief over Ruth's death with her friend, Evelyn.  But I assured her that when the day comes, we will all be happy for her... confident she did all she was supposed to do in her lifetime - and that she is reunited with so many who loved her and have gone to heaven already.

This is a challenging time... a hurtful time, in a way I didn't really expect.  Watching two ladies who are nearly 100 years old sit and stare through their tears is both a heartache... and a blessing. I've sat in Ruth's chair a couple of times this week when I visited.  The empty chair is a constant reminder to these ladies of her absence. To realize that they are so ready to go to heaven makes the thought of losing them a little easier.  It will be a sadness... but also a relief.  They, like Ms. Ruth, will leave a rich legacy of lives well-lived. 

In the meantime, the skills and tactics I use in nurturing a 2-year-old are coming in handy as I nurture my grandmother.  Much of the frustration and stress associated with caring for Mam-ma in the last decade or more is being replaced with a new-found level of patience, compassion, and empathy. I look at some of the things she can no longer do, and I realize that, like a toddler learning to do things for the first time and often stumbling in the process, she cannot help herself much of the time.  She has outbursts and expresses frustration and confusion, just like a toddler... and I have to respond the same for both ages.  

And maybe that's why God has kept her around.  I prayed for a number of years that my grandmother would not die with us at odds with each other... leaving me with bitterness.  She can still push my buttons... but no longer in the same way as when she was "up and at 'em."  Maybe God has kept her here and allowed this decline to soften the blow. 

I apologize if my last few posts have been depressing.  This is a bittersweet season in my life.  And I suspect from comments I've been receiving that many of you are in the same boat... or you just got out!  Right on cue, God blessed me last night with a phone conversation with Timothy that totally brighten my day and reminded me of the circle of life.  Timmy told me of playing with his dinosaurs and reading books.  Then he said, "Okay, honey, I'm gonna let you go and get some sleep!"  With a "later, gator" and an "after while, crocodile" - and even an "I love you!" - he returned to play with his toys, and I hung up confident that he was happy and content... and always loved. 

I don't know when I will get to see him again - and IF I will see my grandmother tomorrow.  But I do know that God is working everything out perfectly.  And for the moment, all is well.

Are You Smarter Than a 99-year-old?

It didn't take my grandmother long to outsmart some of the efforts to keep her safe and prevent another fall.  So it came as no surprise to me when the facility R.N. called on Friday and said, "Ms. Polly is a smart woman.  She has figured out how to turn off her bed alarm, rendering it virtually ineffective as a safety device.  Is it okay with you if I take it out of her room?"  I laughed and told her yes, that was fine.  Clearly, if she can disarm it before aides arrive, we all know she can be off and running (so to speak) and into a whole heap of trouble before help arrives.  And bending down under the bed to turn off the alarm is enough to make her fall in the first place!

The nurse also noted that my grandmother is FAST, which also came as no surprise to me.  On Thursday morning, I had spoken with Mam-ma and reminded her that I was picking her up later that day for a 1:45 p.m. appointment at the hospital outpatient clinic with her cardiologist.  Telling me anything on the phone takes her forever now (and it's not much better in person), but she managed to convey that she was not happy with what she was wearing - that the aides select her outfits each day, and she didn't approve of this one for a trip to the doctor. 

I told her, "Don't worry about it.  I will come at 1:00 and help you dress - and I will fix your hair."  She was scheduled to see the hairdresser when we returned from her doctor visit, but I knew her hair looked awful, and I had taken my curling iron once before and worked on it.  I could at least make her presentable.  So shortly before 1:00 p.m., I loaded my hot curlers and curling iron into the car and headed to the facility.

When I knocked on Mam-ma's door and tried the handle, it opened, and I stepped inside.  "Knock! Knock!" I called.  No answer.  I started looking around.  Mam-ma's call button was on the TV table.  She was not in the room.  I even looked over on the floor between her bed and the window.  She wasn't there.  I looked in the bathroom... not there, either.  I realized that her walker was gone, too.  GREAT!  She's loose in the facility, without even a call button if she falls and needs help!

I stepped back out of the room and walked to the dining area, where several residents were still eating.  No Mam-ma.  I saw the maintenance man, James, and asked, "Have you seen Polly?"  "Yes!  She was just here eating."  He stepped toward her table and realized she was not there, just as an aide said, "Polly's gone to the doctor."  No... I had come to get Polly to take her to the doctor.  The aide continued... "Mary Lou took her already."  Mary Lou is the driver for the facility.  The aide suggested I ask the nurse.  I went to the nurse's office, and sure enough, a phone call to Mary Lou revealed that she was already at the hospital with Polly and another client.

We surmised that the cardiologist's office had phoned the facility instead of me to remind us about the appointment.  When the facility got the call, they placed the appointment on the driver's calendar.  I didn't realize I didn't get the call... and I didn't call the facility to tell them I was taking Mam-ma myself, because I didn't figure it mattered.  Next time - if there is one - I will call.  I utilize the driver for routine things like trips to have her dentures adjusted, a routine pacemaker check, and more.  But when I feel I need to be with Mam-ma and hear what a doctor has to say, I will drive her myself.

So I hurried to the hospital, where I found Mam-ma, the driver, and the other resident sitting in the outpatient waiting area.  Mam-ma looked up at me, grinned, and said, "Well!  I didn't know you was a comin'."  I just laughed.  The driver began to apologize, and I assured her it was not her fault.  However, she had fed both ladies their lunch early and brought them both to the hospital before 1:00, because the other resident had an appointment at that hour.  This meant that Mam-ma was sitting a full 45 minutes before her appointment time.  We didn't ultimately get in to see the doctor until about 2:15 p.m., which meant Mam-ma sat and waited over an hour.  This might not seem like a big deal - and it's not for you and me.  But for a 99-year-old who tires easily, this is an eternity.  Think sitting and waiting with a 2-year-old for over an hour, and you sorta get the picture.  Mam-ma got stiff, and her ankles began to swell a bit from sitting and dangling her legs. 

In the exam room, I had Mam-ma prop up her feet.  The exam was fairly routine... the doctor listened to her breathing and we discussed her hospital visits and the treatments.  He looked at her ankles, and we discussed some of the medications she was given in the hospital and emergency room.  Then he asked Mam-ma if she had any questions, and she raised a bony finger and pointed it at him and said, "Yes... they won't let me leave my room!"  He looked at me, and I said, "Translation... she cannot leave her room without an aide accompanying her, because she is a fall risk."  The doctor launched into a dissertation on how at age 99, a lot more goes into walking than merely walking... balance, memory, muscle tone, strength, and concentration, to name a few.  He agreed that she needs someone with her.

"She wants to go outside and walk on the sidewalk," I added.  "Oh, no, Ma'am!" he said.  "You've already had a bad fall, and you are really very lucky.  Your fall on Christmas Eve could have been so much worse... so much worse."  She just looked at him.  He asked if there was anything else, and she said, "No, but your answer disappoints me."  He just laughed and said he would like to see us again in six months... or sooner if we need him.

By the time I got Mam-ma back to the facility, it was just after 3:00 p.m., and her hairdresser was waiting for her.  She called me later that evening, and she was exhausted.  I was not surprised.  However, the nurse assured me Friday morning that she was alert, clear, and transferring well from one place to another, i.e. chairs, her walker, and more.  The 30-minute checks by aides are still in place, but the alarm has been removed.

Then, Saturday night, I got a phone call about 7:30.  I saw on Caller ID that it was my grandmother, but when I answered, there was no response. I called her name, and finally, she said in a weak voice, "Well, I was calling for Greg (my husband)." I offered to get him, but asked what she needed. It was a 10-minuted convoluted conversation about something about trying to call my cousin Ricky and not being able to get him... then she couldn't get anyone on the phone - all she gets are busy signals... and then it was crying, and "I'm crazy."  She managed to tell me, "I called Ricky this afternoon... and he came over here."  Then why did she need to talk to him again that night?  "I don't know," she cried. 

We went back and forth - she wasn't hurt, she wasn't sick, she didn't fall - and finally I got her to press her call button and get an aide in the room, telling her, "Call your aide and stay on the line. When she comes in, put her on the phone, and I will tell her what you need."  The aide arrived, and she had a hard time understanding why Polly wanted her to talk to me, but finally she got on the line.  I asked her to give Mam-ma her Ativan and put her to bed. She said she would, and she handed the phone back to Mam-ma, so that I could tell her goodnight.  It took a few minutes of reassurance and "I love yous" to convince her that the aide would return and she would feel better in the morning. 

I called later to check on her, and the aide said, "She has been upset and confused like this since I came to work Friday night at 6:00." But she assured me she had put her to bed and given the Ativan and would keep an eye on her.  Based on previous experiences, I figured after a good night of sleep, Mam-ma would not even remember calling us.  That was not the case... she told my sister and her husband all about it today when they visited her - as best she could.  She told them that "I froze... I don't know what happened" and "Debbie talked to me and calmed me down."

I don't know what happened, either.  I just know that while I was talking to my grandmother and trying to calm and soothe her, I thought to myself, "I could easily be having this same conversation with Timothy... and it would make about as much sense."  The similarity was striking.  Mam-ma now has so much trouble thinking of what she wants to say - and saying it - that she actually is harder to communicate with than our 2½-year-old nephew.  As he learns so much each day and becomes more adept at manipulating objects, managing his own personal care - and talking - Mam-ma loses ground.  And that's how life is... for all of us.  I just happen to have a more poignant illustration right in front of me.

I don't know what happened.  I don't know if Mam-ma had a little TIA, or if she just got so tired on Thursday that she was still mixed up on Saturday night...or if she is starting to "sundown" - becoming disoriented and confused late into the afternoon and early evening, which is common with patients who have dementia or Alzheimer's.  This may happen repeatedly - or she might not ever become disoriented like that again.  Time will tell.  At times, I think the spunky little lady who can outsmart a bed alarm is still with us... and the next minute, I realize that time is slipping away - and taking her with it. My prayer is that, one way or another, she soon ceases to realize her limitations and be frustrated by them.  This is something we desire for our babies... and now we wish it for our elders, as well.  And the circle continues...