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!