Springtime skies clouds passing

Yesterday on my hour walk in the sunshine and icy wind, I watched the clouds form, move and pause. Often our skies are clear and cloudless but after an icy, wet, greary (my word for grey+ dreary) weekend the sunshine was welcome.    The waiting is over, Florence passed on Saturday April 13,afternoon about an hour after we left the nursing home.   Relief now because hers was the most miserable death I have ever witnessed although I know others depart worse off.  Jerry, while relieved too, deals with grief in his own way, he, the ever dutiful son  has done above and beyond and yet for some reason that it is finally over with Florence, his mother, circulates through his mind with odd reactions at times. Grief effects everyone differently,  I observe, listen say what I think prudent and let the rest go on by like the clouds in the skies.  

I wrote what I could for her obituary but could not bring myself to add flowery gushy sentiments that would not fit, so it  is simple, as are her arrangements, she will be cremated and ashes shipped to California where she will be buried in Riverside with  her 2nd husband, Lyman, father of the Larsons.  Ironically Lyman asked for cremation and she did not honor his wishes, sticking him in  a box in a grave then  being across the country she ends up cremated.  We could have arranged committal here in the cemetery where her sisters and parents reside, but she had reportedly made her wishes known to her daughter who agreed she would handle it after Jerry reminded her.  That was Florence's way tell someone but not everyone nor the one who had the task.  Make it a bit twisted.  

Jerry now has decided he will fly to California  for the committal service while I choose to not.  I feel a freedom that I have not had for so many years and will not allow disruption of my peace.  If I went to California all I would want to do is visit long time few friends who are there, and would not participate in the charades of fools.    I am done as only I can be done, fully, peacefully and completely.  Words from Joni Mitchell's song, "I've looked at clouds from both sides now......" seem appropriate.  http://www.youtube.com/watch?v=bcrEqIpi6sg

 As a child I'd lay on the ground and watch the clouds in the sky, my granpap Teofil said "clouds don't have to tell you where they are going but sometimes they get loud and shake the skies..."  I memorized The Cloud written in 1820 by Percy Shelley (1792-1822) long  ago, in school days.  Today it fits  as an epitaph for Florence.   I share the first verse and a few lines from Shelley's poetic metaphor for the unending cycle of nature and shudder at the line, "I arise and unbuild it again."   We are released from her unbuilding things including her unbuilding of any semblance of family relationship.  She did not encourage togetherness amongst her children, preferring instead to be the one central hub and thereby  the three remaining are only children.  Everything was her secret to twist or gnaw on as she would, a rather desperate selfishness, no sharing communication, the few mutual celebrations were her 80th and 90th birthday parties that we planned and hosted and her younger son's wedding.  Unable to name her grandchildren and their descendants to the  great greats, because we do not know all their whereabouts nor last names, unwilling to delay this for tenable responses, I chose the adjective "numerous" and considered "scattered" for the obituary describing her survivors.    How different from my considerate relatives who had helped write their own obituaies years before they passed and who explicitly planned and specified their  funerals.  Not so with her, as Jerry said,  "nothing easy about her....."

Here it is  the first verse  from Shelley,  "The Cloud"  available on You tube for listening

http://www.youtube.com/watch?v=0fsRyQQjeVg

" I bring fresh showers for the thirsting flowers,
From the seas and the streams;

I bear light shade for the leaves when laid

In their noonday dreams.

From my wings are shaken the dews that waken

The sweet buds every one,

When rocked to rest on their mother's breast,

As she dances about the sun.

I wield the flail of the lashing hail,

And whiten the green plains under,

And then again I dissolve it in rain,

And laugh as I pass in thunder."

  And  from the  2nd verse describing  the weather we endured this weekend along with her passing...       I sift the snow on the mountains below,   And their great pines groan aghast; And all the night 'tis my pillow white, While I sleep in the arms of the blast.......

I slightly ponder how this will perceive back over years.  But for now, forward, onward in life.  Whatever. 

They can turn on a dime

Watching and waiting and clearing things up continues.  How long will this continue , no one knows. I am writing this so that someday when her other relatives want to know something they can read my blog.  That assumes they really will be curious, doubtful, but never know. One niece (her  granddaughter) is in Japan and called to talk with Jerry and say "Thank you Uncle Jerry for all your years taking care of Grandma."  That meant a lot.   

Last week,  on Thursday, April 4th,  Jerry's mother, Florence aka MIL seemed to be rallying.  She was up in her wheelchair, ate a good breakfast, had therapy sessions, and was out in the  dining room, eating somewhat slowly (nothing new for her ) at the noontime meal.  She added an  extra sugar packet  to her strawberries and really poured the salt all over her food eliciting a comment from  Jerry who is another salter (is it genetic?) that  he had already  salted it for her.  She wanted no help eating, fed herself slowly as we sat and waited and watched, helped cut her food a chicken cordon bleu meal. Really everything looked delicious.   She ate nearly all her boiled redskin potatoes, half her roll,  a bit of chicken and all the strawberries, drank all her water and ignored her tea.  She adamantly refused the apple juice  proclaiming that she had read that  it is not good for you.  Her voice was low but she is only recently out of the woods off the Tramadol that had reacted so badly with her.  What's with that but we did not  question her , merely looked at each other, she is likely back to her normal self now or as normal as normal is for her. The aide who pushed her wheel chair into the dining room mentioned she was a bit peevish, he is new so we assured him "that is her normal attitude."  

 I snapped a couple photos from my phone when she was not looking at me, unaware they would become her last photos.  After her meal she returned to her room, and used the call button for assistance going to the bathroom.  This despite her disgust that we insisted on her doing so, "I can go to the bathroom" and Jerry responded that she could not move out of that chair with out help, reminding her she had broken her hip.  She could not retain that information at all.  She was in good spirits and joined the group for afternoon bingo in the hall, that was something she had not  done yet. She was tired and had to return to her room after a short time, but still,  good signs we thought. 

Friday, morning  April 5 she refused to eat breakfast and was hallucinating terribly and trembling just as she had on the  Tramadol causing us to wonder if someone at the SNF had screwed up and  mistakenly given her another dose.   I sent Jerry to ask immediately thinking I should have done so because  I get an immediate sense of  truth or not and the SNF staff pay more attention to me, they know me and word abounds about my prior professional background and connections. . The nurse said  definitely she  was off  it and had not been given any,  well then what is going on now?  She was not the same one day later.  We watched her almost violently  refuse her noontime meal that they brought to her room, waving her arms, shouting almost, "I don't want to eat. I am not hungry."  She was so agitated that we summoned a nurse who attributed the behavior to her  oxygen level  so she immediately inserted the oxygen tubes and called an aide to help get her to bed.  Florence continued to ramble loudly on and on but finally we did get her somewhat calmed, whew  hours later. 

No sooner had we walked out into the hallway to leave  than I spotted another elderly lady, Joann from the church, a friend to Florence although Florence has not remembered her for many months now.  "Oh please,"  I whispered, "not Joann now."  Joann is in her 80's, another shaky elderly, walks with a cane, has dementia and/or Alzheimer's diagnosis and is on Aricept, but still drives and still lives alone.  Long story short, I question her family's lack of  sense perhaps inability to face and argue with an old woman.  Too late as she looked into each room along the way, spotted me and made her way down the hall.  I asked if she was going to see Florence and sure enough she was.  We'd closed the door partially and I explained that Florence  was having a rough day and we had just gotten her settled and sleeping.  "Well I will just say hello,  I won't stay."   "No,  Joann you cannot go in now." "Oh won't she know me." "Joann I'm sorry but she is sleeping"  "Well I won't wake  her I will be quiet."  "No Joann, I am sorry but no".We tried to help escort her back down the hall when she spotted the room of someone else she knew and stopped in.  We left, because it had been an exhausting spell of hours again culminated with further exasperation.  

All weekend MIL continued to decline, refusing to eat, nothing but water as the oxygen dries her out.  Sunday the charge nurse wanted to send her to the hospital but we refused, what for? An ambulance ride for what?  Acute, skilled care no longer working it is time for palliative.  Her vitals remain good, but she is agitated and  moaning.  One very exceptional nurse, Kathy, who is on duty on weekends and who has 34 years SNF experience besides seeing her own father  decline and pass at 92 knows her  stuff and  got Florence to drink some Ensure.  I asked Kathy if she thought it time for hospice and she agreed, "why fight this?"  She noted and said they could request that  Monday along with sub lingual morphine, because  Tylenol was doing naught although MIL maintained she had no pain.   It was a long weekend and Florence remained in bed, moaning and jabbering.  By Monday they no longer got her up and dressed but she was more delirious.  Yes they had  contacted hospice but cautioned  this means she will be back on non covered room and board,  private pay, but we are thinking so what, use up what remains of her $$. And I well know Medicare would have dropped  their few days payment anytime now because she was not progressing in therapy or ADL (activities of daily living). She has been private pay anyway, what's new?  Monday the SNF got orders for Atavan and I was most skeptical of giving her that, I have seen it counter act badly in frail elderly, worst example the mother of a friend in PA.  I cautioned the SNF nurse about it  reminding her that Florence had reacted badly to the Tramadol but she said it was less than a half dosage.  I said we would stay to watch any effect, and luckily we did.  Within 15 minutes she was worse, more agitated, babbling constantly, incoherent,  and then thrashing about in bed.  I went immediately to the nurse and said "come see this."  To which she  said, "well give it time..."  NO  20 minutes more that's all. I was able to calm MIL a bit with cold wash cloths to her forehead which caused her to relax and close her eyes.  After an hour I again grabbed the nurse who was waiting for the orders on morphine.  "Waiting?  Well who must I call?"   Within 5 minutes we had a dose sub-lingual and although the jabbering continued, the thrashing stopped.  Her most common phrase repeated, "I don't know,"  but sometimes the comical "Bingo, bingo"  followed with a low chuckle.   She had complained that her back hurt so Marissa, a young concerned aide,   called another to help change her position.  That evening I returned to be sure all was being done right  and just in time to observe the night nurse give her evening morphine.  I verified that no Atavan was ordered.  

Tuesday, yesterday, she  was babbling less, but still some and recognized us.  We met with the hospice team and I felt like the weight of the world lifted from my shoulders.  Today Wednesday, April 10 she is bed bound but calm.  The hospice chaplain was with her as we came in, he said he had used her hymn book,  one I'd given her to use when she played the organ at the SNF in the back room, and that she had opened her eyes for some choruses.  I told him she knew those hymns by heart.  Sure enough he and I sang "it is well with my soul' and she opened her eyes.  We think she is off somewhere.  Little recognition, some coughing but when we tried to swab her mouth, she is no longer drinking water, she screeched. No one knows how long this will continue.  This is her 6th day without food and second sans water.  Such a slow, miserable way to die.  I am thankful my family went happily, peacefully and some without warning.  The weather turned wintry mix thunder, lightning and hail last night.  Surely the heavens are not pleased either.   

Waiting for other outcomes

Bird watches the berries   by the lampost
photo taken on one of my walks

Two days ago, Thursday, MIL appeared to be on the recovery trail.  The SNF nurses had determined that Tramadol, the pain meds were making her worse, more confused,  we agreed that they discontinue and within two days she was improved, color better,  up in a wheel chair, able to eat and being herself, which is not all that pleasant under normal circumstances but we are all used to it.  However yesterday and today is another story. This is the second day she has refused to eat.  She continues to need oxygen, her lungs will not work without it, she is very delusional with out constant oxygen, yet it  dehydrates her.  She sits in her wheel  chair when they get her up and simpers.  It is not even a whimper, but a simper, it makes no sense, it is a noise a  very high pitched whining of sorts.  It is pitiful.  Once in a while she says, "97 years old!" she is 96.  She knows who we are, "Jerry  and Pat"  but otherwise, she knows nothing, cannot remember  she has broken her hip, had surgery let alone what day it is, she cannot communicate.  The  pros say, "  Mortality and functional outcome in hip fracture patients are significantly related to the presence of neuropsychiatric comorbidities. The most frequent ones in elderly are delirium and depression."  Yes indeed MIL has both delirium, depression and pulmonary episodes.  If this is her final stage of life it is miserable, a bad way to die, nothing peaceful.

Her daughter does not care, obviously and will not come to visit her mother, big deal she lives in another state, there are planes today, shame on her, someday she may regret her neglect.  Her younger son, I believe, feels he did his duty by appearing this past August with his family.  Well at least he made an effort after four years.  These are my simple opinions, very sad for them, they have not a clue what lies ahead.  Maybe I selfishly want them to participate for our relief, they have not and will not now. Jerry ignores it, says, " why would they change now?"  and he reminds me I  expect too much. 

I have a friend in PA who said caring for her elderly mom that she was an only child until the will would be read.  Well here is a flash to Florence's other children, the cost of the care in the SNF has all but diminished your mother's money.  We have bought  her personal care items and clothes the last years while you were never interested nor asked us what she needed.  You went along your merry  way. Do not appear with your hands open and out when she passes to collect your share, there is nothing $$. And beware the cold winds of karma that blow your way.  I find these people most irritating.  What goes around comes around, something like that, I don't know if the Hindus, Buddhists or whoevers have it right. 

"  .. As my life today....has been determined by the way I lived my yesterday,......
So my tomorrow is being determined by the way I live my today.        Ralph Waldo Trine

The daily SNF visits leave us both very tired.  It takes a hunk out of our days, but what else can we do?  So until something  very unusual happens or MIL passes on, we are tied to a circular duty, one that was not our choice, but one that we assumed,  catch, here comes another curve ball in the game of life.

My father's birthday April 3, 1922

This is the day in 1922, my father, Louie Ball was born in western Pennsylvania coal mining town to a coal miner, Frank Ball and his wife Anna Kudzia Ball. He was Christened Ludwig according  to his baptismal certificate, but all his life known as Louie.   As you know if you know me, I never knew him, he knew I was on my way but he did not know he'd be gone from this earth before I arrived.   He'd have been 91 today but his life was short, over in 1944 at age 22, when his B-24 plane with crew disappeared into the Atlantic.  He was only 22, a pilot in the US Army Air Corp, leaving a young widow,  Mom who was supported by her family and me on the way, a WWII story..

This photo is the only baby photo I have of him.  Elsewhere on this blog I have compared his and my baby photos and written about him.  Oddly today is also the birthday of the youngest daughter of his oldest brother, a cousin I have never met who lives in western Pennsylvania.

Lt Lewis  S Ball,  Dorr Field, FL
1943

We wonder what if and can imagine what might have been but that changes nothing.  What was has been and we are now in the present.  The future is ahead.

Mother in law continues to hang onto life at the skilled nursing facility in our town, but since  her discharge from the hospital, a week ago today,  she has declined mentally, losing the small bit of cognition that she had at 96.  Perhaps it is the anesthetic remaining in her system, perhaps it is the trauma, perhaps the pain medication was too severe, all together  everything plays a part in her decline.  She no longer knows why she is where she is, she cannot fathom  that she has broken her hip and had surgery, yet she knows who we are.  She is a very difficult patient, tiny but very demanding, frail and stubborn and is best when she is sleeping.  She does get up for therapy and sometimes eats in the dining  room.  Today she declined to eat the midday meal and was sleeping when we went for our daily visit.  Yesterday she was more delirious and the well meaning aide allowed her to have the walk around phone so that she could talk to Jerry.  Oh right, nothing like a 6:30AM wake up call from someone who cannot string two words together but wants the phone.  We have adamantly asked that they not make phone calls to us for her, it does no good and is disturbing.  She is already delirious  why must we get on the bandwagon?   She is agitated and  demanding.  Somehow she cons a helpful aide into dialing the phone for her, the aide likely  thinks it might help and so  tries to assuage and make sense to someone who cannot comprehend.  When we answer the phone she cannot even talk  and when she does she is not coherent.  What a wonderland, how tiring this is.  How I wish her daughter had her as her responsibility, but that would never be, she did not want to be infringed upon years back and now the option is long gone. Through caring for elderly and years of long term care administration, I have never seen a situation like this. Only one time did the facility where my uncle resided  ever call me to talk to him when he was not making sense,  they figured it out and mostly he was of good temperament and humor even when ailing.  A different person.   She could be like this for how long, she could live on for years, she could improve, she could have ups and downs, all coulds  and no guarantees. Both of us are exhausted at the end of the day.  Maybe we could refer the delirious calls to her daughter or her younger son, let them see what life is like, let them be disturbed, let them not get to do what they want, put themselves on hold, sure right, silly thoughts.  That will be the day.

Someday there might be a funny story here, like Friday night when we returned from dinner and the phone rang.  The nursing home showed on caller ID so Jerry picked up and it was quiet.  Finally a voice said, "who's this?" and when he replied, "Jerry" the voice said, "here's your mother."  WTH?  We had spent 3 hours there earlier and accomplished only an agreement with the therapist to order a wheel chair. MIL  does not ever remember that we were there. Florence (MIL) got on the phone and began to babble and then demand that Jerry come take her home.  As he tried to repeatedly tell her she was home, she faded.  As he shouted into the phone, because she cannot hear either, "get the nurse" she replied, bewildered, "what nurse."  Finally a nurse came along and took the phone, apologizing  that some of the other residents had taken it upon themselves to help her  out to call,  shades of Jack Nicholson and "One Flew Over the Cuckoos Nest"  the loonies have taken over the asylum.   Somehow when one gets too much of this repeatedly it is difficult to see the humor.

If it's not one thing it's your mother

December 13, Christmas Party
Florence looking at Santa's baby

So goes a pop culture quote that includes books, TV shows, magazine articles, t shirts, even Robin Williams' sayings and some reach back to Freud blaming it on your mother.  But that it has been the mother again here, a siege for us beginning with the phone call Sunday afternoon:  Jerry's 96 year old mother, Florence,  (aka MIL=mother in law) fell  in her room at the  skilled facility where she has resided for two years.  She has been  our responsibility since 1980 when her husband passed away and we acquired the task of looking out for and  putting up with the demands and annoyances of this dependent, manipulative woman as her other two younger children opt out.  Truth, Jerry's full sister, dead since 2004 but who was alive at the time would have stepped up but she had her own siege of medical and financial problems and was not really able to do much.  So it has been that we got the Old Maid.  At 96, you think there is not much  time left but they live long lives in her family and she is the last of the 5 sisters, the youngest, the baby and the less stable  mentally and the nastiest.  All this has been told before, our lives whirling along and finally we have had some degree of freedom with her in the nursing home.  We have been concerned about this potential, she had a walker to use for stability but with her dementia and  bull headedness she often neglects to use it in her room.  The orthopedic surgeon wondered if she had previously fallen.  How does anyone know, her hearing is almost non existant, she does not communicate, she attempts to be secretive, to hide things, much as the hoarding we cleared from her room.  That is another story we filled 4  big trash cans with old  napkins, boxes, paper plates, old newspapers, old church bulletins, envelopes, and the worst used disposable underwear.  The  facility staff try to not  intrude on a resident's privacy but after I discovered the garbage upon garbage, some other protocol must be followed. 

Who knows how it happened, they found her on the floor near her bed, and in pain.  She has a high pain threshold and an ability to ignore aches so when she complained, they knew it was serious.  An ambulance transport to emergency at the Gunderson hospital in La Crosse and ever since  4:00PM Sunday it has been a tilt a whirl; her partial hip replacement surgery at 11:00PM, being up out of bed Monday morning, standing yesterday and declared medically stable and dischargeable back to the SNF today.  Medically stable says nothing about mentally unstable and there's not much to be done about that.  She convinced the hospital attendants to call her son and when she got Jerry on the phone she was belligerent and demanded he come get her.  We requested they not connect a phone, but they try to do what a patient wants or what makes their life easier.  I wish her daughter had interest and would come and sit at the facility, taking care and be pushed to  frustration but that is not going to happen and so we make do.  I watch my own tongue and attitude because I do not want to be mean to an old lady, someday I'll be old too, but what a predicament.  Long discussions with the therapists and nurses at the home this morning about protocols and a new level of care for her. Will she comply, will she attempt to do something she should not and reinjure herself, what next?  All questions to be answered as we look toward Easter.    I'll not be Easter decorating this year, too much else to deal with.  

Full healing may take 6 months.  This is a time of instability when anything can happen.  A cousin reminded me that Aunt Berniece died of complications from a broken hip, but Florence has a strong heart and  body in ways unbelievable for a 96 year old.  Many  nurses marveled at how good she looks for 96 and then they marveled at how nasty she could be,  how she could be foul in disposition and demeaning, I am not surprised.  We hope progress continues.  Such is life.