when death is close... our experience

it struck me the other day that i became most fearful when i didn't know what to look for in the death experience. i went to the place i knew i would find clues the fastest-- my friends blogs. i knew when their loved ones passed so could go right to the weeks prior to read their experiences.

wow-- y'all sure put my mind at ease. certain things were written that i even brought mom out to read thru-- these pieces gave us courage, knowledge and peace of mind. THANK YOU.

thought that i would share some of that stuff with you today-- in hopes of helping just one other person who might need to understand those same things. granted you should know that everyone's death is individual, there are some things that are pretty standard. although i'm sure i'll dabble between both.... here's our story:

in november of 2007, dad started sleeping more and more. he was still talking, eating and still had recognition, but that sleeping 22 to 24 hours a day for days on end was un-nerving.

december was pretty much the same, but the solid food meals became less. he was still drinking fluids like crazy so his nutrition came primarily from carnation instant milk... but he still loved his fruit and his eggs on those days swallowing wasn't difficult.

january 2008 brought on some personality changes. dad was always a quiet man... very participatory in conversations-- just not chatty... january brought more head nodding and listening. he lost his desire to come out from the bedroom and sit among us. he lost his desire to see visitors or watch the neighbors thru the windows. he also became more picky about what he would eat and would do weird things with his food. this was different as he'd always eaten what was served.

february brought less and less of dad. swallowing became more difficult, talking was there but only responsive if anything. there was a lot of mumbling. his breathing was always labored. he used his walker only to get to the bathroom and back into bed... and he began falling. by the end of february he was not taking any nutition at all. he would go for days without anything. it was at this time i called his primary doc and ordered home healthcare.

i felt-- at the time, that i wasn't doing dad's caregiving well enough... thinking that they would assist dad with better "medical" type help. he hadn't been taking his pills, no fluids or nutrition... he stopped peeing-- no bowel movements in days. by their 2nd visit, they recommended dad go to the hospital. they called the ambulance-- i went back to dad and told him we were going to the hospital. this startled him but he didn't put up a fight. i could see it in his eyes tho.... "please only do what's right." i could have died right on the spot. i knew his wishes but i also knew that we had to take care of him-- it didn't feel all that wrong. i just had to get it in my head that the delicate balance of what dad wanted and what he needed had to be done.

we spent 10 hours in the ER. they put a catheter in him. this was the 2nd time i could have died right on the spot. i hope this memory goes away-- i think those hours in the ER is the worst thing i've ever sat thru in my life so far. he tugged and tugged at that catheter. he was restless, he was in pain, he had people poking him all the time. that misery on his face had me in such a state of "what was i thinking" i couldn't function.

by 11pm that night he was admitted and in his hospital room. while dad did his best to sleep, i went thru all the medical history with the floor nurse and then.... we talked DNR CC.

OMG.

we had sent all the legal papers in the ambulance with dad so the hospital knew his wishes. i knew his wishes. but even with all that stuff, it sorta hits you hard when the actual conversation comes about.

anyway. dad's first couple of days in the hospital were the easiest. i had good contact with the doc. dad had awesome nurses and techs. the most disturbing part of those first days was an infection dad got from the cath. he never stopped fussing with it-- the whole 8 days he was there.... this broke me. but, the medical world insisted on it. we had a social worker talking us into some rehab in a facility in hopes of dad getting his leg strength back. i remained leary but open to their thoughts of what they felt was best.

into the weekend, i saw less and less of that need for rehab. the doc became this person who had been in earlier and he never returned my pleas for his calls. i left sticky notes everywhere! the earlier talk of a feeding tube had ceased. the nurses, while helpful, became less. i don't say this as a fault of them... but i think they saw me as dad's advocate of "why do this anymore" and that's not the way they are trained. they are trained to heal and all efforts must simply adhear to that.

this was frustrating to mom, my brother an especially me. my days consisted on coming down here to mom's first thing in the morning, taking care of her and the dog and animals, going off to the hospital to see dad, coming home to take care of mom at lunchtime, going back to the hospital, coming back to mom's, then collapsing at home to do it all over again-- ohh- and yeah, there's the hubby and kids inbetween to acknowledge! so i was tired-- and having to report to my brother who was traveling at the time-- and to my mom, that the hospital staff is doing this to dad, he's going thru that test, we're waiting on rehab facilities, this could happen, that could happen.... all the while dad is being poked at, tugging at his cath, faces in his face telling him they're going to do this or that-- all different faces... he would look at me, wink or groan and i would melt. i just had to get him home.

he knew. i knew. it was time. enough was enough.

monday night brought in a new social worker. time to force the issue. it was a fight at first but i stayed on her. finally she took a breath and acknowledged what we wanted-- dad to go home under hospice. within minutes the cath and IV came out. i came home to mom's and told her of this small success. that was the first night in days either of us slept.

while i certainly can't get too upset over that last fight, i see a real need for hospital staff to become better at acknowledging the lines of death with family. if i hadn't fought for this, if i hadn't become almost too focal for this, i honestly believe they would have kept treating dad. i was the one who had to ask repeatedly "what are you treating?!!" "what are you hoping to heal?!!" "tell me something new... tell me something medical that contradicts my opinion."

tuesday i went into the hospital thinking dad would be released. funny how those decision makers made themselves scarce. i called, i asked, i left sticky notes. nada. i'm livid by this time. my brother returned home from his travels hoping that i had succeeded in getting dad home. mom was ready-- waiting-- praying.

repeat all that on wednesday.... however, managed to rope the social worker in. she called hospice and i met with them on the spot wednesday afternoon. again went thru all the decisions and made appropriate plans. dad's hospital bed, gel mat, table were delivered to the house by 5pm. one hour earlier and i coulda gotten dad home.... but.... got it ok'd that he'd be transported home thursday morning. this went without a hitch. hospice came thru with determination and grace. they handled it all from the moment i hugged our hospice nurse to seal the deal.

by thursday afternoon we had hospice in the house twice. the 4 hospice meds were ordered and i picked them up. we had a blizzard coming in on friday-- these HAD to be in-house. hospice pays for everything you need while under their care... i walked outta the pharmacy without dropping a dime. maryann waited at home with mom, when i arrived and handed her the meds, she took another 45 minutes to fill the syringes with dad's doseage, filled me in on the how and whens and gave us a crash course on the difference of prevention vs. comfort care.

dad's face was full of relief. he could once again look out his window and feel the warmth of his room. he was immediately emotionally comfortable.

friday the storm came in and we gave dad his meds via syringe in the side of his mouth-- no shots, it was all liquid that absorbs thru the skin. he remained comfortable-- and there was no fear.

saturday was the day dad began his active death experience. his breathing changed-- his breathing stopped and started. anyone who was near him could hear the difference. here's the link to describe pre-active dying and active dying (dad was in pre-active dying for just over three weeks, active dying for 3 days.):

http://www.hospicepatients.org/hospic60.html

our experience with active dying was the noticeable change in breathing, the coolness of his hands, his loss of consciousness, his rigid body, the changed skin color.

sunday was the same as saturday... as was monday. by monday afternoon, a quiet fluttering was heard while he took breaths. it grew louder as the evening went on. this of course is "the death rattle" but to me it seemed more like a flutter or gurgle.

while brother and i sat with him monday night, we talked to him and held his hand. a few times he seemed to relax but the non-stop breathing thru the mouth persisted. this surprised me... i thought we'd see him stop breathing even during this stage. around 9pm, dad opened his eyes for us... big and beautiful! there was peace on his face. he shut them again, then opened them two more times before he took his last, soft breath at 10:51pm. it was very gentle and beautiful.

after awhile, i called hospice. they were in-house within the hour. dena called the details in, then scheduled the funeral home to pick up dad's body. she stayed with us the whole time. we got the narcotics out of the house immediately, cleaned things up a bit then locked the house door by 2am, the final time dad would exit.

here's another link that proved so very helpful to mom and me. it goes thru things that might be on your mind. we found it invalueable.

http://www.healthandage.com/html/min/gentle_endings/web/managing/intro.htm

hope this helps someone out there.