Wednesday, April 10, 2013

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.   


  1. EMAIL from Tom: I have read that in the dying process the body shuts down gradually, losing sensory perception and perhaps physical abilities progressively. Hearing is supposed to be the last thing to go, assuming hearing wasn't lost already I suppose. I did see that with Bobby. Shortly before he died, it was time for his medicine. He was asleep and I said his name to rouse him. No response. Then in a somewhat stern and louder voice said, "Bobby!" He immediately sat straight up in bed and I gave him his dose of whatever they had him on. He laid back down and a couple of hours or so later, he was dead.

    MIL at times, from your descriptions, sounds as though she might cash out at any moment. But, she might be one of those people, like my grandfather, with an inner strength that just refuses to let go. This is a 'tough row to hoe' for you two, but you are doing all that is in your power to do for her. Don't forget to take care of yourself and Jerry too. The caregivers too often sacrifice their own well being for the afflicted patient.

  2. My response to TOM: Yesterday when the chaplain returned to her bedside with us, he spoke and she did sit up as much as she does now and open her eyes, a level, minimally responsive. Her hearing has been gone for several years and certainly diminished to non existent in the past year, so it is amazing she hears. Also she has always been cold, the past year when she was dressing herself she would wear a sweatshirt and a sweater over it. Now she is quite warm, the hospice nurse said the body will do that. Whatever is keeping her, who knows, it is a miserable sight. Days back, over the weekend, when I was talking to her I said, "Florence you are just not feeling good can we get you more comfortable?" and she responded, "miserable." I said, "you are miserable?" And she said yes miserable. She
    would mutter that word over and over too.

    For a woman who did not talk much she has not been quiet until they gave her the morphine.

    This drawn out death is getting to Jerry, I can tell. He said, "nothing is easy with Mom." Today he has a meeting with the attorney about the trust and disposition of remaining assets, $$. His sister who moved from CO to CA now claims she is going to drive here to take her mother's ashes back to CA and have her buried at the Riverside veterans cemetery along with Lyman, her husband, Barb's father. I did not think that was allowed at veteran's cemeteries, at least I have never heard of it, but we really do not care. All we said was, that we are not keeping her ashes until it suits Barbara to retrieve them so she either gets them promptly or we get burial here.

    Yesterday we cleaned & tossed more stuff from the room besides all that we tossed when MIL was in the hospital, old newspapers, papers, etc she had hoarded. More of the same, now and laughed that she had "acquired" a stack of the Golden Living (SNF) monthly newsletters and hoarded them at the bottom of a drawer. Apparently when she was up and around she would go on the prowl and help herself, she had several of their towels and washcloths
    which I returned before. The activity director in being nice, showed her where they stored their extra newsletters and said that she could help herself. Over a year ago, when they featured her as the resident, she had them send one to her entire tribe. With her memory loss, she sure remembered where those were and had a stash ever since. She had always been a saver and hoarder, so not surprising and further evidence of the progression of her dementia which we and the SNF were well aware of.

  3. I wish you the best during this hard travail. It's hard when we can't see the blessings we'll get from being patient and rendering such service as you have with her. In the eternal scheme of things you will be rewarded though that can be small comfort while enduring the now.

    I'll keep you in my prayers.

    1. Thanks, Patrick. I know stars in the crown of glory, etc. This with MIL is the most trying. Today the hospice HHA said it should not be long, so we trust and hope. MIL has no peace about her, I can feel the agitation in her bones. My grandma said people linger because they cling instead of peacefully grasping the Lord's stretched hand and departing. Seeing that now.

  4. From Sandy email: Pat, my heart and prayers are with you and Jerry. It would seem that when we enter our golden Years, they quickly become the rusting years. The horror is that not everything in the body and mind rust out at the same time or rate. The hymns were an excellent comfort for a mind that is failing her, but still in her heart.

    Sandy S.

  5. Pat, as difficult as these posts are to read, they must be so much harder to be experiencing. It is a sad way to decline into the inevitable. You and Jerry are doing all you can in a very difficult and gut-wrenching situation. My thoughts and prayers go out to all of you.