Is She Losing Her Mind? Or Is It Me?

My sister’s body is wearing out, I think.

It should be. She has cancer, chronic obstructive pulmonary disease, a cirrhotic liver, and an 80th birthday this month.  In honor of this pending milestone, I decided to re-read the more than fifty notes received from her during the 1 1/2 years she was living in a Manhattan Nursing Home.  This is more communication than I’d had with her in the rest of my 60+ years combined and, for posterity, am including a few snippets:

  • If you rescue me from this place I will bless you from the bottom of my heart and thank you all  my life.
  • When are you going to take me out of here? If yes, when? If not, why not? Surely you can see that there’s nothing wrong with me now.
  • I don’t trust the operators here. I think they’re planning to do something like listening in on the phone. But we’ll be careful what we say.
  • I couldn’t help having a nervous breakdown but I’m well now and I need your help.
  • I believe everything happens for a reason. There was a reason I found your X-mas card when I didn’t have my address book. And so it is.

Rod SerlingEntering the twilight zone

Amazingly, having not heard from my sister in roughly 2 years, not even a X-mas card, Bellevue Hospital located me, as her closest living relative, at my Visiting Nurse office. And the saga ensued.  It wasn’t until I visited her at the Manhattan ‘home’ that I learned she had arrived after discharge from Bellevue with nothing but a hospital gown hanging on her skin covered bones and an envelope with some Medicare and Medicaid papers and, yes, my X-mas card.

Fast forward to four months ago when I finally rescued her to an Extended Care Facility nearby.  It’s been a busy four months. Shenanigans over her not being allowed to smoke, being put on a ‘locked’ unit, many conflict resolutions and relationship building with staff, an ‘incidental’ diagnosis of cancer, enrollment with Hospice, and things settling down a bit, on the surface anyway.

Stay Balanced. Do The Tao. Go With The Flow.

And so it is.  All the grandchildren came to visit during July. A living, thriving, thrill ride in itself.  And my husband and I decided to take the 17 and 14 yr. olds to a High Ropes Course. Highest elevation almost 100 feet above the ground. I wonder why…. A shared, and bonding, experience as all four of us are white knuckled gripping to the safety of the starting platform battling with the natural resistance to stepping out, onto a flimsy wood-slatted bridge, so easily twisting at the slightest provocation.  I hear Leon Russell singing – “Up on a tight wire, one side ice, the other fire.”  And we each stepped out, alone, and finding our way, overcoming our fears, trusting the equipment, and our skills. “Up on the tight rope, one side’s hate and one is hope”.  And for the next hour and a half we played, stoked and even somewhat nimble, pushing the edge and balancing on one foot.

A Big Balancing Exercise

It was a mitzvah bringing my ‘half-sister’ out of Manhattan. I’m labeled as her primary caregiver, but it’s really the Nursing Home staff who minister to her physical needs.  I just visit.  Each visit requires between 3 and 4 hours.  But that’s only part of it.  It’s also my responsibility to advocate on my sister’s behalf when necessary. So I check in with Nursing Home Nurses, Aides, Social Worker, and Administrators as well as Hospice Nurse, Aide, etc. This, in itself, is a balancing act.  Getting information without alienating.  Building relationships on my sister’s behalf.  But The Big One is Assessing my sister’s status with my own eyes, mind and heart.  And this is where my having a respectably-sized bag of tricks comes in handy. And I’ve been in a bit of a Leon Russell-kind of mood.

I’m up on the tightwiretightrope and fire
flanked by life and the funeral pyre

You see, my assessment of my sister’s status is very different from that of staff.  To staff she is mostly pleasant and quiet.  Easily managed.  Slightly sociable. Eats what she wants to eat, sometimes more successfully than others.  No Problem-o.  I, on the other hand, get an undetermined amount of time of recognition, maybe some smiles for a bit, the eating of the pizza with the accompanying alternative communication techniques, and then I get The Rant.  Same things every time.  I have to figure out what’s going on. What she’s saying, and how she is behaving looks and sounds irrational, to me.  It is compounded by wanting to know how much of this behavior may be related to her illnesses. Does she have a chronic mental illness that no one is mentioning,  but I’m not ruling out?  From my intermittent and brief encounters, throughout my life, I Do Know that my sister has behaved in quite irrational and even ‘crazed’ ways in the past. We always chalked it up to too much alcohol. She Did like her martinis, and hot peppers.  But, and this is the tight rope – Her rants and rages are, mysteriously, directed at me.  Is she rational enough to, somehow, know what she’s saying? If so, she has a lot of anger in her and, in my cosmology, that’s not a ‘better’ way to experience one’s death. And she is definitely getting closer.

So This Is What I Did

The Rant started at a still ‘undetermined’ amount of time, but start it did, and that’s when I launched the plan and it went (in an abbreviated way) like this:

Me:  I’m glad you brought these things up because I try and try and still cannot understand how you can believe, and insist on, your ability to live independently, in an apartment, in Manhattan, when you have become so weak that you can no longer care for yourself in a safe way.  What you’re saying is irrational and I can only conclude that you’ve lost your mind.

Her:  (Very Loudly and very clearly) I Have Not Lost My Mind! You have the power to get me out of here. (this goes on for a bit when her ‘sight line’ moves to over my right shoulder, the same as a few visits ago, and she begins a passionate plea, prayer, demand for whatever-it-is-that I cannot see, to give me  The Power to get her out of here).

Me: Thank you for asking for The Power. I don’t think I have it yet, but I remain open and ready if anything changes and I can get you out of here.

Her: (with escalating passion) You’re going to Hell! (repeatedly, and with variations)  If Daddy was here he would be angry with you for the way you’re treating me, for doing this to me. You’re my only living relative! (etc. and on).

Me: (staying absolutely calm, and absolutely focused on what is going on with each of us and between) You say you haven’t lost your mind and I accept that.  In that case, I just don’t understand where all this anger is coming from, especially the hurtful things directed at me.  We’ve lived completely different lives, and I know barely a smidgin about what your life was like. From the time I was born you were on the margins of my life. I’ve only had good intentions toward you, even though I have, occasionally, hesitated to answer the phone. Yet you accuse me of being horrible to you and doing you harm.  And I know that if our Dad was here now that he would not be angry with me. He would appreciate that I’m doing the best I can and that it’s good.

Her: (as if in a new awakening) You don’t know Daddy! (several times)

Me: Let me tell you how I know our Dad. (and I reviewed some the many ways & whys I know him, when another light went on) You know, when you look at both of our lives,  the only thing we have in common, is Dad. Beyond that we have totally different lives, different experiences. I have no idea what it was like for you growing up. You were born in 1935, and Dad was in the Navy during the war. Then he worked at jobs that took him away from home for the better part of weeks. What was that like for you?

Some Calm         Hapbsburg Trellis

After the responding harangue, during which many angry feelings were unleashed, the finally verbalized perceived injustices of her life spit out, and the fairy tale she believed my life to be unfolded,  I told her some of my experiences, and interpretations that were relevant to hers, and slowly a calm enfolded.  She did say that she forgives me, so I guess I’m not being damned to hell after all, but I’m not going to hold her to it.  A fellow resident tentatively drove his wheel chair to the edge of the room and extended a big bag of candy to share.  My sister’s eyes lit up and that gosh darn winning smile was flashing.  An Aide came in to see if she was ready to do something else.  It was opportune to get out while the getting was good.  Two kisses, a couple of gentle rubs, a pat, and out.

Deep Gratefulness

During one of my re-charging times, this very introverted hermit wannabe was watching a new DVD  The Practice of Grateful Living“, a conversation between Br. David Steindl-Rast and Jack Kornfield, www.Gratefulness.org.  And one thing really jumped out and has stayed with me more powerfully than anything else was when Br David said that Gratefulness is Interactive Mindfulness.  I got a taste of this during this visit with my sister.

I told my sister that I would stay with her for the duration and I’m looking forward to the adventure. It may be the last great one of this life.  So be it.  🙂

 

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