(Updated on 2009-12-01)
My father – Max, has been in a long-term care facility – Maimonides, for the last 7 years suffering from a form of Dementia – Lewy Body Disease. On Monday November 9, 2009, after spending the last two weeks in Emergency at the Jewish General Hospital suffering from pnemonia, he returned to Maimonides where he has now entered the end of life cycle.
To the best of our knowledge, the Comfort Care he is receiving will only sustain him for a few days.
Throughout the years, both Sara(11), Alex(7) and my wife Anna have visited my father almost on a weekly basis. The last time they saw him – three weeks ago, he did not look well. However, since his return to Maimonides, he not only looks much better, he’s also more comfortable & peaceful – which is the only goal we have.
On Tuesday, November 10, 2009, we picked the kids up from school and explained that we were going to visit Zadie (grandfather) so they could see for themselves how much better he looked than the last time they saw him. We also rationalized Curative versu Palliative Care as;
We don’t want Zadie to get sick before he dies. We are trying our best to make sure he doesn’t get pneumonia again, or, any other kind of infection. Even though Zadie has been sick for so many years, he was – all things considered, always comfortable and well cared for. And when it’s time, we would just like him to be comfortable, fall asleep and not wake up.
For all the pamphlets, books, posts and web sites you may read, for all the doctors, nurse, orderlies, care givers, friends and families you may consult, here is my contribution. From Max’s bedside, or from home, I’m trying to journalize the experience, in 140 characters, or, less with one, or, two daily updates.
Feel free to follow along and share http://search.twitter.com/search?q=%23max+%23dementia. With the link open, you always click your browser’s Refresh button to catch-up on the latest Twitter updates.
Update: Twitter no longer returns search results beyond a few days
Maybe this is part of Twitter’s monetization strategy – which would be a good one. Nonetheless, I copied my updates in my FriendFeed channel.
Spending first night of “comfort care” at my father’s #max bedside at end of #dementia http://myloc.me/1qq0m
studies show that patients on palliative care often live longer, are happier and families have time to say good bye http://bit.ly/2hVEsq
#max fave was soaking up the Florida rays, so played ocean surf mp3 & opened bottle of tanning oil. Quiet night. #dementia
About to pickup Sara (11), Alex(7) & wife Anna to visit my father #max while he’s still comfy. #dementia
Having my wife Anna & the kids Sara (11) & Alex(7) visit my father #max to say their goodbyes went incredibly well for everyone #dementia
ComfortCareDay1. Brother’s turn to relieve mother & stay bedside with father #max tonight.Still on 6hr Tylenol,occass 2mg Morphine #dementia
ComfortCareDay2 morning report: #max needed 2mg Morphine during night. We may have to start giving it every 4hours sometime today. #dementia
Rationalized Curative vs Palliative Care to Sara(11) & Alex(7) as; “We want Zadie (#max) to not get sick (like…) before he dies” #dementia
ComfortCareDay2 nighttime: #max started on 2mg Morphine every 4hours & oxygen today. He had a lot of visitors & is sleeping now #dementia
ComfortCareDay3 morning: #max didn’t have as restful night as I would’ve imagined but better now. Guess we’ll have to up morphine #dementia
ComfortCareDay3 evening: #max had better day than last evening. My fault 🙁 I should’ve raised his head.Good day for visitors:-) #dementia
ComfortCareDay4 morning: #max had a bad night again coughing/choking & needed extra shot of Morphine. Hoping day will be easier #dementia
ComfortCareDay4: had to give #max something to dry up fluids to stop choking. His breathing is now about half normal rate. #dementia
ComfortCareDay4 night: #max had to have morphine upped to .3mg every 4 hrs but resting comfortably now. Getting Robinul too #dementia
ComfortCareDay5 early: tough night 4 #max. Robinul isn’t helping, trying Scopolamine in 3hours. Morphine 2b upped to .4mg #dementia
ComfortCareDay5 early: oxygen & puffer helped #max a little but hoping Scopolamine will bring relief. Just got .4mg Morphine #dementia
ComfortCareDay5 evening: #max is comfy. Scopolamine beakthru not needed yet. Robinul working with .5mg Morphine #dementia
ComfortCareDay6 morning: #max had a relaxed night. Scopolamine beakthru needed 1x, Robinul, .5mg Morphine & combivent working #dementia
ComfortCareDay7 morning: Very very quiet night for #max. We’re just sticking to the routine. Week has been full of family/friends #dementia
ComfortCareDay7 afternoon: stopped robinul & opted for only regular doses of scopolamine. #max is very very quiet. #dementia
ComfortCareDay7 evening: all this robinul, scopolamine & combi-vent yet congestion is always problem. But #max is resting again. #dementia
ComfortCareDay8 morning: A record for #max: 12 hours with no _indication_ of any congestion or pain! #dementia
RT @4Gma: Having a sad moment… #dementia. There’s a Jewish expression Yasher Koach — `you should have strength’. I think that says it all
ComfortCareDay8 night: After 21 comfy hrs #Max has 6 hours of coughing/Apnea ~20 seconds no breathing. Just got .2+.5mg morphine #dementia
ComfortCareDay9 morning: After 9 days of no food or fluid, #Max gets some breathing relief from oxygen #dementia
ComfortCareDay9 morning: Overnight nurse helps #Max by suctioning water out of lungs & pledges to us he’ll die with dignity #dementia
ComfortCareDay9: Day Dr upped morphine to .6, scopolamine & robinul for #Max (breathing heavy) & left orders for Plan B. #dementia
ComfortCareDay9 evening: Meds stopping #Max from coughing but still has a little gurgling. Breathing heavy/steady last 10hrs. #dementia
ComfortCareDay10 Morning: #Max had an uneventful & restful night. Nonetheless, his breathing is weaker & a little erratic. #dementia
ComfortCareDay11 Morning: With shorter & shorter breaths, #Max passed away peacefully with dignity & family by his side. #dementia
ComfortCareDay11: please help me immortilize #Max at http://stevenmilstein.com/2009… & leave a comment. #dementia
#max Funeral Info: http://www.paperman.com/cgi-bin… #dementia
ComfortCareDay11: Sorry!!! WordPress Comments now working. Please try again for #max http://stevenmilstein.com/2009… #dementia
Thanks for the RT @aboutdignity regarding my father #Max http://twitter.com/stevenm… #dementia
@ElderCareRN my heartfelt condolence re: your father. #Max was in long-term care for 7 years. Lewy Body Disease caused awful hallucinations
MILSTEIN, MAX. On Friday, November 20, 2009. Beloved husband of Frances. Devoted father and father-in-law of Elaine and Alan Sims, Steven and Anna Maria, Alan and Resa Milstein. Cherished Zaidie of Benjamin, Sara and Alex, Samara and Danielle. Dear brother of the late Hymie Milstein, and brother-in-law of Mort and the late Vivian Braunstein. Max will be sadly missed by all who knew him. Funeral service from Paperman & Sons, 3888 Jean Talon St. W., on Sunday, November 22 at 2 p.m. Burial at the Beth Israel Congregation Section, Kehal Israel Cemetery, D.D.O. Shiva Sunday through Thursday from 2 to 4 and 7 to 9 p.m. daily. Donations in his memory may be made to the Maimonides Hospital Foundation, (514) 483-2121, ext. 2207.
When the funeral service has ended, the mourners come forward to fill the grave. Symbolically, this gives the mourners closure as they observe the grave being filled in. One custom is for people present at the funeral to take a spade or shovel, held pointing down instead of up, to show the antithesis of death to life … to throw three shovelfuls of dirt into the grave.
Taking hold of the shovel, the feel & sound of the dirt and the sound of the dirt hitting the coffin. That’s Closure.