Tuesday, August 15, 2006
Monday, August 14, 2006
today i grieve for her death.
today i rejoice in her birth.
today i see the ship battered by the seas and winds of her last voyage.
today i see the ship as trim and fine as when she was first made.
today i hear her laughing at a story just beyond the veil - ha. ha. ha. - each laugh its own statement, punctuated and clear.
today i hear her chuckle aloud as she read the comics.
today i hear her rage at the laborious and long path of death.
today i hear her rage that my mother voted for Nixon.
today i hear her worry at me for my tears over her pain.
today i hear her worry at me to sit and rest. please!
today i remember the flutter as nurses and loved ones endeavor to make her comfortable.
today i remember the rastafari and the sailor with the machete bringing her comfort on a quay.
today i feel her peace as she promised me she knew we all loved her.
today i feel her peace as she promised me she loved me.
today i feel her sorrow for the children she must leave.
today i feel her sorrow at a child lost.
today i know she is in a better place.
today i know mine is a better world for having had her in it.
today i grieve over her death, my loss, but i rejoice again for this, her last birth.
today there are two minds but they support one another, complement one another.
at 1:03 PM
Sunday, August 13, 2006
after a long arduous labor some 11 days long, Grandma successfully birthed into her new life at 6 o'clock Nashville time. it is joyous indeed for her to be now in a place where God's love can be felt so much more clearly, where beloved ones like her son Michael can be rejoined, and where she can laugh once more like the strong and sweet spirit she was - unfettered by pain or shortness of breath.
it is this we must remember and in which we should rejoice - even as we respect and acknowledge the sorrow of our own loss.
please feel free to share cherished anecdotes in the comments.
at 9:01 PM
Friday, August 11, 2006
in my last post, i forgot to stress that all of Grandma's friends and loved ones are welcome to visit her. she appears to have disassociated from her body for the most part, but i believe she still takes comfort in quiet company. visiting hours are 24-7, though certain safety precautions are encouraged late at night.
please feel free to call one of the family for specifics on her location.
at 9:20 AM
Thursday, August 10, 2006
given how things had been progressing, Mom and Roland went on to work for a little bit Monday and i drove over to visit Grandma. i arrived right at the start of visiting hours to find her finishing up a bath with her carepartner. she was much, much worse than she had been to date, pleading and winded, though the carepartner was so kind and sweet with her. the nurse gave her her pills with a tiny swallow of water which she partially aspirated into her airway. though she coughed and coughed, Grandma could not get her airway clear. her agitation persisted and her struggles to cough up the fluid intensified. the nurses had already given all her pain medications and could not give her anything else for anxiety. after about a half an hour of trying to calm her, i could feel hysteria building. this is saying a lot given everything we have been through in the past year and a half. there was no way i could maintain the morning watch alone.
my mind cast about for anything that might bring her calm. her favorite pastor was going to be visiting later in the afternoon. i called Mom to get the pastor's cell - if she could come sooner, perhaps it would help. Mom called for me; she and Roland left for the hospital straightaway. the next 30 minutes crawled by. just as Mom and Rol arrived, the RT came in. after nebulization, Civogne performed NT suctioning to clear the airway. this is remarkably horrible to experience but was truly necessary to ease Grandma's misery.
after that, she was so terribly exhausted that she fell into a sleep of sorts. Sandra, the pastor, arrived and prayed with us for a time. this seemed to sooth Grandma and certainly helped sooth us. Sandra also gave us information on a place called Alive Hospice. after that, Grandma pretty much slept until ~5pm. they woke her giving a shot, after which she did not sleep for hours, and at which point we pretty much drew the line in the sand regarding any treatments outside of pain medication.
a wonderful admissions nurse from Alive Hospice turned around from her drive home to meet with us and get Mickey's paperwork ready for admission to Alive. she stayed an hour and a half completing paperwork and was just an incredible comfort.
Tuesday was better. Grandma had some restlessness but was fairly quiet overall. mentally, she seemed to be pretty much checcked out. the transfer was initially scheduled between 8-12 but the ambulance could not be arranged until 2-2:30pm. they arrived right at 2:30 and Grandma and i headed down to the ambulance right around 3pm. unfortunately, the ambulance AC died while they were upstairs with us. it was ~ 110F inside, obviously unacceptable. so back into the ER to figure out a solution then back to the room to wait for the new ambulance. during this whole time, Grandma was getting more and more miserable - the gurneys are just so very narrow and pokey. she was vocalized, i was crying and eventually even the burly EMT started tearing up.
the poor EMTs came back around 4:30 with the new ambulance and we left the hospital at 5 o'clock on the dot. we made astonishingly good time to Alive Hospice. hydrangeas were waiting in the room to welcome her. the staff is just wonderful and they settled Grandma in. instantly they had her on better and less invasive pain medications. the staffing is excellent - they currently have 7 inpatients in the unit, 3 nurses, a charge nurse, 2 carepartners, a chaplain, a social worker and a doctor.
in the meantime, both Brian and Frank arrived from out of town. we visited a few minutes at the new facility then left Grandma to rest. yesterday, the carepartners gave her a bath for which she was quite peaceful. they brushed her hair and tucked in stuffed animals under her arms. she was much much more peaceful and generally seemed mentally absent even when looking around. this is a very positive sign, suggesting she may be entering the last phase of dying.
one last thing to share today. this is a passage from the end of book provided by the hospice center:
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: "There, she is gone!"
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: "There, she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"
And that is dying.
-Henry Van Dyke
at 9:32 AM
Monday, August 07, 2006
it has been a couple days since i wrote, but things have been so peculiar i did not really know what to say.
after Friday's distance and progress on transition, Grandma took a step 'back' by re-anchoring to her body Saturday. her vitals continued to stablize though she didn't seem to really make progress. mentally she was much more with us. she told stories, laughed at little quips and was generally engaged. she described with delight her new favorite show Meerkat Manor and dreamt of meerkats. she demanded coffee and butter pecan ice cream, chatted up TraV and picked on her brother. i did not write then, even though there were many 'choice moments' because i did not know what to say.
yesterday, Grandma was much more like she had been on Thursday. she was sore everywhere, unable to settle or sleep, and alternately petulant and angry about her continued existence. she had had an episode of sorts in the night and was, for a while, restricted on all liquids. she wheedled, whined, scolded, and cursed until the doctor reversed the orders.
after a couple of talks with us and the nurses, the doctor said he felt he had a much better feel for her case and that she was not really making gains. he moved her to another ward and dramatically decreased her instrumentation, transitioning more to 'comfort care.'
the new ward is very nice and the nurses so far are fabulous. the visiting hours are much wider, flowers are allowed, and Grandma has no machines around to beep and pulse, except the IV fluid pump. while we were with her she tried to bite out her IV catheter and kept deliberately removing her nasal insufflation. over the course of the afternoon, it became clear that this was an attempt at 'stopping'. since her observation is also pared down, she may eventually succeed in desaturating to arrest. then again, this may drag on one way or another at length.
i cannot yet divine whether God is not ready to let Grandma die or whether it is more that separating from one's body through death - just like separating through meditation - requires practice. the new ward visiting hours start at 11am, at which time i hope to have a better idea where she is headed.
at 9:11 AM
Friday, August 04, 2006
Grandma continues to deteriorate but in a very positive way. her medical status is much more stable yet i suspect her ties to her body much more fragmented.
Grandma was much more peaceful overall today. mentally she was much more withdrawn and had 'let go' of icky details of the last couple days. this distance was more marked than expected based on and temporally inconsistent with her medications. much more of her conversations seem to be with either people on the other side of the veil or with memories. these are very, very positive changes as they are consistent with the early stages in the transition to death.
it is a peculiar thing to be rejoicing in this transition, to be reveling on some level in every negative prognostic sign. even as i find myself joyful and grateful for every clue that Grandma is separating from her 'mortal vessel', i cannot stop the tears. so terribly proud i am of her strength and caring and joy, so happy that her pain seems to be easing. at the same time, so destroyed to see this moment i simply could not imagine closing in and knowing soon she will not be there to tease and to tell the story of 'Dos Margaritas.'
as i mentioned above, today her dialogue was much less present. at the same time, overall the conversation was much less pleading, much less tortured. Mickey laughed several times today. not the laugh-devolving-into-a-coughing-jag of the past, but a wonderful and naughty chuckle. at one point, i asked what she was laughing about. 'just love to laugh,' she said. that she does - i will never forget the joy of overhearing Mickey reading the comics. she is the only person i have ever known to laugh outloud while doing so.
Grandma spoke of crossing a bridge and told me there was 'just one thing I need to figure out.' it took me a while but i think that thing was dying. then she asked, 'When will the adventure begin?' 'Soon,' I promised, 'soon.' 'I just love you all so very much. I am just so tired, so tired.' 'We know. We love you too. It is okay. You cross any bridge you want. We are just so very proud of you, so very proud.'
that we are. so proud and honored to have known her all these years and loved her so dearly.
Paul, her brother, and his wife Trudy arrived last night; they met us first thing to go to the hospital this morning. we checked in with Paul and Trudy tonight in case they thought we were 'circling' in our desire for her passing. Paul chuckled and cried some but said, 'Well, if there was any doubt, it would have been gone when we walked in. The first words out of Mickey's mouth were, "I told them I wanted to die."'
she has repeated this clearly several times and i pointed out that this was between her and God. she seems to be doing her best. she said she wanted to go to Jimmy Kellys and said it has been the happiest of times. i would agree. our time as a family has been precious and full.
Mickey is indeed a brilliant spark, filling the sky of our existence with her sass and her sensibilities. i hope this next adventure begins for her as soon as is right and that it is filled with as much sparkle and wonder as such a jewel deserves.
at 10:42 PM
Thursday, August 03, 2006
it has been a hard day. it was immediately apparent this morning that Grandma is sliding. as soon as i arrived, she said she was mad at me but she would not tell me why. she was quite clear and vehement about this.
Grandma's urine output is in the tank and she has been much more withdrawn. her glucose control is better but she is now running a mean blood pressure of roughly 55mmHg. they are backing off meds but the changes are slow. she did not cough much or curse today and instead allowed her breathing to drag against the goo in her airway. overall her breathing is more labored even with extensive bronchodilator therapy and, heartbreakingly, her sparkle gone.
we met with the doctor after a couple hours. he agreed she was much worse and suggested putting her back on the ventilator. Mom and i pressed him with regard to her problems, prognosis, and the long-term quality of life issues. after thrashing through everything, he reversed himself and said he wouldn't put her on a vent unless she specifically wanted it. we then went and laid everything out for Grandma and asked her what she wanted. she said she did not to go back on the ventilator and that she was ready to die, that she wanted to die. we told her she would have to negotiate with God on that one.
i realized at this point that the reason she was angry with me is because i had told her yesterday that she couldn't quit. it seemed the right call at the time, like it was a hard day but reasonable for day 1 off the vent. i do not regret it but - at the same time - today is obviously a different kettle of fish. i told her that it was okay to die, that she didn't have to keep trying, at least not for our sakes. after that, Grandma became much more interactive.
the doctor agreed to get her a 'little something' to take the edge off and started her on Xanax. this made her sleepy but much much less miserable. ironically, her breathing and oxygenation have also improved. that isn't to say she isn't still suffering.
she kept moaning and saying 'Oh God.' at one point she said, 'Why is it so hard to die?' i said, 'Well. They have built up a whole industry around keeping people alive.' she gave the only chuckle i heard all day. 'That's sure true,' she said. realistically, since control of her lungs, heart, blood pressure and kidneys has been co-opted through oxygen supplementation, inhalant therapies, and intravenous and oral medications, it will indeed be quite difficult for her successfully stop.
Mom said, 'It'll be okay. You don't have to be afraid.' 'I'm not afraid of dying,' she replied.
Grandma slept for a while before waking. 'Oh God,' she said. i said 'Yeah, he is one hard negotiator, isn't he?' 'He sure is...' 'Well, you keep at it. See if you guys can't come to terms.'
she woke once more to tell Roland and me, 'I'm stuck.' it took us a minute to realize she meant stuck between living and dying. i said it was probably like one of the old Bugs Bunny cartoons. not too bad but the first step is a doozy. a minister friend of all of ours, Sandra, came by to visit and pray with us. it seemed to offer some succor.
we left Grandma asleep, wrapped in our love, with many prayers to God to make up his mind with alacrity and stop her suffering one way or another. now we will just have to see what exactly He decides.
i find myself quite troubled - where exactly does the line fall between God's will and medical capacity?
at 6:47 PM
Wednesday, August 02, 2006
Friday morning my grandmother had an episode of severe respiratory distress that necessitated ambulance transport and ventilatory support. she remained on a ventilator until yesterday. this is an update i wrote yesterday:
just wanted to get out a little update on Mickey. the doctors determined she had pneumonia in the base of her left lung, which probably caused 'the incident' Friday, versus it being an irreversible deterioration. the pneumonia is slowly responding (based on rads and her temperature) and her coloration is quite improved. Mickey's oxygenating ability remained pretty terrible over the weekend; the secretions from her lungs were quite thick but have improved slowly.
this morning, given persistently improved parameters, she was taken off the ventilator and extubated. Grandma has had a lot of challenge in clearing her airway and has had recurrent bronchospasm. she is on pretty aggressive inhalation treatments to try and help with that. it has been very rough today and we are unsure if she will exhaust and require re-intubation tonight. i am guessing 20-30% chance that she will have to be reintubated to rest and then retry in another day or two. obviously that would be a setback, but not yet a decision of quality vs quantity of life.
toward the end of the day, Grandma was able to talk a little though she was still somewhat out of it and her interests were immediate 'miseries,' most notably the nasogastric tube. i give even odds on it being out in the morning regardless of doctor interests... we mainly stuck to a binary blink system so she could conserve energy for breathing. she did know us and said she trusted me (to be honest) when i promised things would be a lot better soon if she could stay calm (to help with the breathing) and work on strength of her coughing. i reminded her i always kept my two 'rules' with Mom and would be playing by the same rules with her: 1. Never lie. 2. Never promise something i couldn't deliver.
her pulmonologist is very good and i like him a lot. her nurses are also top rate. the doctor let me stay with her for the extubation and the nurses thanked me for staying, saying that she certainly seemed to respond better when i gave their 'orders' to her, esp when they had to do nasotracheal suctioning. overall, we are just very grateful to have her in such good and open hands, and we count on her and God to determine what is the right thing to happen.
i have shared all of your well wishes. tomorrow we should have a better idea where the cards may fall.
Grandma made it through the night without either reintubation or removal of her feeding tube. nasal swab culture came back positive for MRSA; vancomycin has been started. kidney function is being monitored fairly closely and medications were adjusted after a drop in urine output last night. nasotracheal suction for sputum culture today was unsuccessful.
the propofol wore off during the night and now Grandma is much more alert. this, of course, is a double-edged sword. the upside is that we can better assess her mental status. the downside is that she is miserable and feels tortured by every little thing that is happening. she cannot get comfortable and still struggles to breathe in spite of intravenous and inhalant therapies. Grandma did try and laugh a couple times today and her swearing is increasing, both things i take as good signs.
the waiting game continues. i will try and keep everyone updated.
at 9:49 PM