STEVE MARTIN'S KING TUT

Julian wrote about going to see the King Tut exhibit in Seattle - click here. He included a video of Steve Martin doing his 'King Tut' skit - here is the original version in costume on Saturday Night Live - if you need laughter therapy, check it out (there is a 13 second ad) - it's worth it !

PROFESSOR BOB SANDLER READING CORNER

 Ellen and Robert visited the Professor Bob Sandler Reader Corner at Temple Beth Am and sent the following photos. It looks really comfy and you get to drink coffee while reading. Love it!

SCHIZOPHRENIA

OP-ED CONTRIBUTOR

Our Failed Approach to Schizophrenia

By PAUL STEINBERG

Published: December 25, 2012

Click here to read this article on Schizophrenia by Psychiatrist, Paul Steinberg.

Remember it when you go to vote on increasing funding for Mental Health.

"It takes a village to stop a rampage. We need reasonable controls on semiautomatic weapons; criminal penalties for those who sell weapons to people with clear signs of psychosis; greater insurance coverage and capacity at private and public hospitals for lengthier care for patients with schizophrenia; intense public education about how to deal with schizophrenia; greater willingness to seek involuntary commitment of those who pose a threat to themselves or others; and greater incentives for psychiatrists (and other mental health professionals) to treat the disorder, rather than less dangerous conditions."

ROBY'S SECOND YAHRTZEIT

10 Tevet, December 23rd

I thought about you with every Chanukah candle-lighting 

and every game the Red Sox lost last season,,,,,,

and the way things are shaping up in the off-season

it's not looking too good.

I lost Shirley this year too.......

now, only 1 person left from 48 Harlem Street in Dorchester....

Miss you...........love you..........

TRAGEDY AT NEWTOWN 12.15.12

I just read a passionate post on Julian's Early Morning Blog, (Facebook Post) regarding the tragedy at Newtown at Sandy Hook elementary school last Friday. An intersection of guns and mental illness - NO ! There have been comments of "now is not the time to discuss Gun Control" ......oh yes it is + it is now all over the news including comments by our President at the vigil on Sunday evening where it was obvious he was angry. It is horrible that it takes 20 'littles' to die before even the NRA along with politicians now say, yes it is time to talk about gun control, at least assault rifles. When I was little, I was afraid of my teachers, NOT that I was going to get shot ! (teachers in the Boston public school system were really frightening at that time - eyes front, no talking, hands folded on the desk....)

And over and over again on these talk shows in the last few days, mental illness is on the table - it should not be stigmatized; these people need help; where is the help ? It's still a taboo topic. I just buried my mother, Paranoid Schizophrenic. I am still grieving over the tragedy of her life and how it impacted everyone around her. Growing up I never felt 'safe.' You never knew what Shirley was going to do. I can relate to those kids who today, probably do not feel 'safe.'  I have PTSD. I had a visceral reaction, nausea looking at the pictures on TV....."I have seen the enemy and the enemy is us." It has to Change. We are better than that. Please send donations to NAMI. Support your local chapters. I don't know why they don't have a visible presence in this media blitz but I am going to make some calls. Budgets have been slashed for mental health programs. Along with gun control, this has got to change.

The day before I went to see Shirley in the hospital last June, I called my local NAMI chapter. A woman was available to speak to me on a Sunday ! I needed support - I got it...

The Sandy Hook Elementary School Tragedy; NAMI Statement Includes Trauma Resources

ARLINGTON, Va., Dec. 14, 2012 -- The National Alliance on Mental Illness (NAMI) has issued the following statement which includes recommended links to trauma resources for families: click here to read more.

Addendum: From the Obituary of Shirley Silverman:
In lieu of flowers, contributions in her memory may be made to N.A.M.I. (National Alliance on Mental Illness,) 3803 N. Fairfax Dr. Ste. 100, Arlington, VA 22203. www.nami.org 

HAPPY CHANUKAH

FIRST NIGHT

Lighting the Menorah from Roby and Bernice, Roby's baseball......

Happy Chanukah to everyone in the Sandler family !

I didn't send out any cards this year .......

DIVORCE DECREE - DECEMBER 20, 1977

After the FBI came to our house and took Julius to jail, Shirley wanted a divorce. Julius did not but nothing would change her mind. He went to Court and told the judge he worked at Novel Iron Works as a salesman and he didn't make much money. (That's what his tax returns said. He had a friend at Novel Iron Works) So he was ordered to pay Shirley, $75.00/week in Alimony. That was the final nail in her coffin - she never recovered. Barry now lives on a trust fund set up for him by Julius from the 'hidden money." He lives in a 2400 s.f. single family house that he and his ex wife, Wendy built. When they got divorced, he forced Wendy to leave. She did not want to but he told me he invited his friends over, partied all night, kept her up and finally she left. The apple does not fall far from the tree. Barry Silverman, no respect for women, a tough guy.....

"...as provided by Chapter 208 ss 1-2 and that upon and after the expiration of six months from the entry of this judgement it shall become and be absolute unless, upon the application of any person within such period, the Court shall otherwise order, and it further ordered that said plaintiff to have the care and custody of Barry Silverman, their minor child; reasonable visitation to defendant at all reasonable times and places. The plaintiff to pay to the defendant the sum of seventy-five ($75.00) alimony each week hereafter beginning December 23, 1977."

BARRY AND JULIUS SILVERMAN CANTON MA

I was 14 years old when Shirley married Julius Silverman, bookie, tough guy of Malden. I like to call it 'Schlepped Along For the Ride." I spent ten years  living in that house on 45 Lillian Road. What went on in that house would make your hair stand on end. The public face we presented to the world was 'everything is fine'. Nothing could be further from the truth. We, Julius, Barry and I all had to pretend that 'everything is fine.' We acted our way through life. No more. I am too old and tired - I don't have the energy for that.

This blog is about telling the truth. No secrets. No pretending. With that as a preface, I received the following voicemail message from Barry on November 27, 2012 at 10:28 am :

"listen to me very carefully....
you are f***in' dead to me
you understand ?
you f***in' lunatic
i might go out and have a drink just to f***in' spite you
but don't worry about it because you are no longer my health care proxy
you     are      dead    to     me"

Ok then......that's it for me. And this came from sober Barry during the last week of his outpatient Rehab. Gee, tell me how you really feel. He has become Julius Jr., tough guy. I had to take it back then from Shirley, not now, not anymore.

HURRICANE SANDY 10.29.12

Massachusetts will start to feel Sandy’s fury late Sunday night; governor declares state of emergency

E-mail | Print | Comments (79)10/27/2012 3:31 PM

No place to run, no place to hide. I ran away from California due to Earthquakes in large part. I was in the earthquake of 1989 in downtown San Francisco. I saw masonry buildings crack, shards of broken glass all over the sidewalks and watched the Marina District burn with blazing fires. I did not do well with the ground shaking beneath your feet unexpectedly, no warning - two weeks later, walking around in Berkeley I burst into tears for no reason.....+ all I could think of was 'I have to get out of here.'When I had the opportunity, in 1998, I left. I don't do well with disasters - it triggers my PTSD.

Growing up in Boston, we never had hurricanes in October. August, that was it. I started getting ready for the hurricane last Saturday. The warnings started coming in on Friday. I went and got batteries, non-perishable food and waited for the 'tropical storm/hurricane/nor'easter. It came on Monday. All day long . High winds + rain.

Michael called from Pensacola where they deal with hurricanes all season long through November. He said I should be ok because I live in a concrete frame building and just stay away from the windows in case they blow out. Molly MacNaughton emailed to check in from New Hampshire with an update of conditions there and to see how I was doing.

Fortunately, I did not lose power- I had the internet, cable and phone. Massachusetts got off lightly although some people did lose power. But nothing compared to what is going on in New York.

Click here for more info re. Boston.

THREE MONTH CHIP

Barry sent out his 24 hour chip, one month chip, two month chip + three month chip- upcoming, november 6th will be the four month chip. He continues to go to his Outpatient Rehab at Right-Turn and is doing very well. He is also cooking up a storm - now he's turned to baking, coffee cake and cupcakes.

ROSH HASHANAH + HAPPY BIRTHDAY

THE BOBBSEY TWINS

On every Jewish holiday, a blessing is said, thanking whatever power in the universe "...that has helped us to reach this occasion..."- the She-hech-i-yanu - after all the events of the summer, Shirley's passing, barry's hospitalization, it is incredulous that we lived to sit around the table with my friends, paula, dorothy and jane. At the last minute, Barry announced he wanted to make a brisket. I am very tired; I still have not recovered from all the events of the summer leading into the fall. I was planning on a very low key, quiet 'holiday' but instead I had four guests. Every year my birthday falls somewhere around the Jewish holidays - this year it was on Rosh Hashanah. 

PAULA AND BARRY IN FRONT OF BOBY + OLD FAMILY PHOTOS

After I told barry that dorothy suggested he open a restaurant and play the piano, he said, "for the being the one millionth person to say that, "she gets a brisket" and then the fun ensued. Dorothy brought a delicious salad - arugula, avocado, tomatoes, lettuce - 

barry cooked up a storm - the brisket was so tender it fell over while cutting it - he tried his hand at making a kugel; everybody loved it - 

For the dessert part of the evening, Jane created my birthday cake using my 100% organic chocolate, no sugar, no dairy and organic raspberries and shells - 

For the entertainment part of the evening, barry agreed to play piano so I was treated to a jazzy rendition of Happy Birthday and some other songs from the Cole Porter, '40's era - it was good to see him playing.......for awhile there, we all held our breath.....

Blessed are You, Force/Energy of the universe, who has kept us alive, and has preserved us, and enabled us to reach this season. 

(Interpretive version)

For more information about this blessing click here;

THINGS ARE LOOKING UP

After a long time of no blogging, things have settled down to a dull roar. I needed some time to decompress from being in 'crisis mode' for most of the summer. Of course I am still processing the loss of Shirley....words fail........more on that later.

The upside right now is Barry. He completed two and a half weeks of Rehab at McClean. He's been home for a couple of weeks and is going to meetings near his house. But the best news is that he was referred to an outpatient Rehab place in Arlington, Right Turn (righturn.org) which caters to musicians primarily. He just emailed me his schedule - monday, tuesday, wednesday, and friday, 9-1. It's a big schlep to get there from where he lives in the South Shore in Canton, but he went yesterday, he went to groups, met some nice people....it's all good !  One day at at time.

Here comes the best news of all: last night he received his 60 day chip ! He is so excited about it it's fabulous ! I am too !

Also, he's already played two gigs in the last week and as I write this, he is on his way to play a "Bereavement Luncheon" in a trio which will go for five hours.......

CLARK WILLIAM WADEY - AUGUST 6, 2012

Ken called and told me. Amber had a baby ! The littlest Wadey made his appearance at 1:31 PM - a great, big baby at 8 lbs 1 oz and 21 inches long ! Catch up on all the latest at the Wadey household - big doings......wonderful news !
Click here to read more. Congratulations Amber, Chuck and big sister Aurora.....

SHABBAT AT TBZ + BARRY

What a week ! Barry has completed 36 days of sobriety he told me today - he gets a badge which I think is terrific. Talking to him is like talking to a different person now. He said "I've laughed more in the four days I've been here than I have all year". Good. He's in good spirits and the admissions person, John, told me the other day "he's thriving." Also good. One day at a time.

I just got back from TBZ. After such a hectic week, Shabbat services have become very meditative. Plus I say Kaddish. Today I would use the word 'synchronicity." I met a woman sitting in the lobby by the door as I was leaving for the Temple. She asked if I could help her. She was using a cane, the kind with four legs and she said she wanted to go to the Temple. I said I am going there, let's go together. During the service I mentioned Rose Bronstein, my third grade Hebrew school teacher and she exclaimed, " Rose was my best friend; we both taught at Hebrew College !" Just amazing.

Wednesday I went to Shirley's apartment - very tough.........more on that later.........

WEEK FOUR - McCLEAN UPDATE

Barry has been accepted at McClean for their fourteen day program with the option of being referred for more time. Immediately after that, the insurance company called to say they are cutting off his benefits for where he is now at Presentation Manor. I filed an Appeals Letter to buy time - he is covered during the Appeal. How horrible these people are cannot be overstressed + that's Blue Cross Blue Shield PPO for which he pays over $600.00/month. There is NO healthcare in America, but I digress.........what a scam....Barry is scheduled to go to McClean on Monday. Four weeks sober - he is a different person + very lucky he has recovered his physical health.

WEEK THREE - PROGRESS

What a week, last week........what a weekend.......the hospital transferred Barry last Thursday, not to McClean's residential treatment program, instead to a 'skilled nursing facility" where he is getting physical therapy, occupational therapy and speech therapy (not for speech problems, but for cognitive function problems). He is in a wheelchair with a plastic bracelet that says Fall Risk.

I was called at 8:30 sunday morning by a staff person "your brother has packed his bag and wants to leave..." He called me saturday night with the same news. He called his friends too. Everyone told him to stay there. He was very angry. Can you say "emotional rollercoaster ?" At 4:00 he called to apologize....the mood swings are off the charts. When I spoke to Noelle at McClean today she said that goes with the territory. I am learning a lot of things I didn't know before. I am out of my area and will have to go to Alanon meetings to meet other people going through this.

Somehow he did not leave. I spoke to him this morning. I told him I spoke to Noelle and said "this is carol miller" and she said, "how is your brother?" This woman speaks to 100 people a day - I was amazed she remembered me and Barry. After I told barry that, he said "what is the number?" !!!! He made a call over there himself - progress, first time........

SAYING KADDISH

I went next door to TBZ (Temple Beth Zion) to say Kaddish for Shirley/שלובה. 
To hear it, click here.
To learn more about the meaning of it, click here.

I once asked a Chabad Rabbi in Berkeley if you had to believe in God to be Jewish. He considered the question thoughtfully and said, "no you don't, just come." So you don't have to believe it, just say it. I have heard this prayer all my life, sung the way the soldier sings it - it takes on a new meaning now. For more information about 'The Jewish Idea of God', click here.

Interpretive Translation:

(Rabbi Rami Shapiro)

New beginnings bring to mind old and recent endings. I owe much to the past and to those who embodied it. Parents and grandparents, children and siblings, teachers and shapers, friends and loved ones— all these, living and dead, add their touch to the person I have become. To the living, I turn in gratitude and love, extending my arms in friendship, offering them renewed love. To the dead, I turn in memory, affirming their lives with the fullness of my own. In the midst of doubt and hope, at once alone

and in community, I seek the courage to bear the fearsome burden of the

Unknown with dignity and grace. In honor of those who went before me, I rise to affirm the eternal cycle of birth and death with this Kaddish.

Magnify and sanctify holiness throughout the world. Establish peace and harmony; share the suffering; reach out to those in need, helping them lay down their burden or shoulder it more powerfully. There is a suffering that is natural to Life. Yet so much of what I bear is an unnecessary burden, arising not from Life but from fear, not from living with death but from dying to Life. May I learn to accept the necessary suffering. May I learn to put down the unnecessary suffering and let go the jagged hurts I have created for myself. May I allow my pain to give rise to compassion— compassion for myself, compassion for others. May the Power that makes for peace throughout the heavens be the Power upon which I draw to make for peace in my own life. And let me say: Amen.

Kaddish and Shiva Minyanim  

(Daily Prayer Services) 

(See Chapter 4,“The Affirmations of Life,” Resources: Daily Minyanim)

Kaddish is the Jewish prayer for the dead and is the primary obligation of all Jewish mourners. For some mourners, Kaddish sounds like a mantra and becomes meditative through the repetition of the words and their sounds. Kaddish speaks directly to the mourner, “Choose life and turn away from death.” For centuries, the recitation of the mourner’s Kaddish has helped console and heal Jewish mourners.

Mourners recite Kaddish throughout the mourning cycle.Traditionally, Kaddish is recited three times daily and only in the context of a minyan of ten Jewish adults.

ADDENDUM: Most of the above information comes from the Bereavement Guide from TBZ. To read more, click here. The Kaddish prayer is discussed on pages 37 + 38.

OUT OF MY CONTROL

I just got home from Aquatherapy. Before I left, I called Barry and did not get an answer. When I got home I called the social worker, Bridget to find out if she got the forms for McClean Hospital that I left at the desk. She said "all information needs to come from him. We are following his lead." What ?!?!

So, another brick wall of Hospital Bureaucracy. I followed all the information from Noelle J. from McClean regarding looking into and contacting Rehab. Programs NOW so he will have a place to go when he leaves the hospital.

I am contacting the Clinical Director of the Detox Unit on Monday to see what can be done.

HOSPITAL BUREAUCRACY + 'THE GREETER'

I now officially have what I call "Hospital Bureaucracy Nausea". Yesterday when I walked into St. E's I was angry. A beautiful, tall, blonde woman standing by the front desk said "can I help you ?" I told her the whole story re. Barry and how he was moved from the Detox floor to the Respiratory ICU and now he is on the sixth floor, not getting the help he came into the hospital for ! Who's talking to him about Rehab programs? Where are the trained professionals he needs ?!?! I can't be the one taking on that role because I am his sister, not a trained professional ! I told her I wanted someone from the Detox floor to come down and talk to him - give him the services he came in for + I wanted someone from the hospital staff to call the Detox floor and tell them to do it because they don't listen to me, the pesky family member who gets treated like I am invisible and no one communicates with me unless I force them to ! I also told her unless that happened, I would call his insurance company and tell them not to pay the bill because he is not getting the services he came in for. She did it ! When I got to Barry's room, Craig Bennett, Clinical Director of the Detox floor was in the room talking to barry - it was exhausting but it worked.

What Barry will do is another matter. He was much better yesterday, still on 75 mg. of Librium, down from 300 ! Yikes ! He is literally drugged, can't walk, talks slowly - this is not the barry we know. Around 2:30ish he told me this detox is so horrible he never wants a drink again. Music to my ears.  Something happened around 5:00, his mood changed, very down and he asked me to get him a pint of Dewars - "do you want to live ? " I said. I am not a trained professional - this is very, very sad. 

NO HEALTHCARE IN AMERICA

I went to St. Elizabeth's this afternoon to visit Barry. I brought him a hot pastrami sandwich on a bulkie roll with spicy mustard and extra pickles which he requested. Barry is now on the sixth floor in the regular hospital population. He is not in the Detox Unit where I dropped him off on Saturday because his Detox symptoms required higher doses of Librium and Atavan than they typically give on the SECAP unit. (St. Elizabeth's Comprehensive  Addiction Program) Today I learned that because he has been out of SECAP for five days, he cannot go back there.........Saturday afternoon, Sunday, Monday, Tuesday, Wednesday = five days in Hospital Bureaucracy. These are rules made by Insurance companies which were not written on Mt. Sinai and need to be changed.


I have made a number of phone calls to long term residential care facilities which I discussed with two social workers and a counselor from SECAP at the hospital today. We are all on the same page regarding what Barry should do after detoxing....long term rehab. Now, it depends on what Barry will choose to do when he comes out of the fog and drugs of detox.

HOSPITAL BUREAUCRACY AND MORE

I didn't hear from Barry yesterday and needed to rest myself. I just called over there to check on him and was told "...we don't have a Barry XXXXXX here..."  Yikes ! I told her I dropped him off on Saturday and WHERE IS HE ?!?!? Finally I was told they transferred him to RICU ! They have their own language and don't bother to tell you what it means - Respiratory Intensive Care Unit ! Double yikes ! I just spoke to one of his doctors, Dr. Adam Cieciuh......."he needs higher doses of the medications Librium and Atavan than they give at SECAP. They expect to taper down  and then he should be transferred later on today back to SECAP. You should be able to speak to him later today...."

I will have to go over there and become his Health Care Proxy. The doctor apologized for the lack of communication. Triple yikes !

DAZED AND CONFUSED

I am beginning to feel burn out. Overload. Too much. Emotional stress - thank you everybody who reads this blog and emails me with words of comfort - it really helps not to feel alone with all this death and dying going on. Even Aunt Ruth called this morning with, if not exactly words of comfort, more like orders to 'keep living and eat Carol, did you hear what I said - we are living ! you have to take care of yourself !"

I always said I could not deal with both of them at once. I am not happy the universe has seen fit to make it so. 

I have to step back. 

BARRY + MORE FAMILY DRAMA

Yesterday I got a call from Barry's friend Audrey. She read the blog post about how badly he is doing. I called McClean Hospital Residential Program. They told me he has to go to Detox first before he can go there. Audrey drove over to his house, called 911 and they took him to Norwood hospital Emergency Room.  He voluntarily went. However, no beds at Norwood Hospital in the Detox unit. So she drove him over to my house where he slept. He is in alcohol withdrawal, has the shakes and has some medicine for that. He was told he could go to St. Elizabeth's detox which is ten minutes away from me. He called them at 8:00 a.m.

Here comes more hospital bureaucracy. They have to do an intake evaluation over the phone. After that he has to go to their Emergency Room and repeat what he did yesterday. And then, MAYBE there will be a bed available......It looks like this is going to be a long day. I am going on lack of sleep for two days now, and for the past three weeks when Shirley was in the hospital.

After Barry got off the phone he said "how will i get back to Canton?" I said you are going to St. Elizabeth's detox for 4-5 days - he said "that long ?" Yesterday he agreed to go to McClean. I didn't bring that up this morning. The more delays in the 'system', the more time he has to change his mind. Yesterday he agreed to everything - today is not working out the way we were told. These are the 'duplication of services in the healthcare system" Obama is talking about. It is not serving the patients some of whom get well in spite of what passes for healthcare in America.

One of his friends, Bruce, is supposed to go to his house and get him some things and then go see Barry. Haven't heard from him yet.

Barry is now lying down in my bed while we wait for the hospital to call.

UPDATE: 11:30 AM

I am sitting in the E.R. while Barry is in a room finishing up the intake information to get admitted to the Detox Unit. I think this means there is a bed for him. I did talk to his friend Bruce, who lives in New Hampshire who is driving to Barry's house, getting his stuff and then driving back up to Brighton and St. E's - that is a good friend. We were told no visitors are allowed in the Detox unit. Since I live so close, that is disappointing. I hope he gets the help he needs. And pray he goes to McClean after that.

UPDATE: 2:30 PM

I just got home. Kissed him goodby on the tenth floor of SECAP, St. Elizabeth's Comprehensive Addiction Program. He will be there for four days. I can bring him things so I will see him, maybe tomorrow. I'm going to collapse now.

HAPPY BIRTHDAY SHIRLEY JULY 5, 2012

Here she is, looking her most Elizabeth Taylorish,

who she was compared to in her youth.

Interesting, both Ellen and Jeff, who remember her from age 7 and 8, both remember her as beautiful;
she was 41 years old here, + she looked fabulous..........

I think it was ellen who remarked, "...she looks like elizabeth taylor..."
I know she was happy to hear that............

Shirley, August 1971, Seacrest Inn, Cape Cod

DRAMA AT THE FUNERAL

It was around 90 degrees at the gravesite service. My friends Dorothy, Jane, Bill, Bruce and Howard offered to come - inviting people to a funeral seemed weird - they offered - and Robin, the manager at shirley's apartment building came. She is so nice she brought me a bouquet of peach roses and one to send off with my mother. Just as the Rabbi was about to get started, off in the distance I saw a woman appearing, and then two people, one on each side of my brother, holding him up. Jon and Christine Levine live next door to him. He could not walk without aid. He has been M.I.A. during the last three weeks - I was shocked to see him - later my friends who had seen him six months ago commented on his shocking, aged appearance. He is drinking himself to death.

Not even a funeral could happen without drama in the Sandler-Miller-Silverman family. I told the Rabbi this day was about my mother, not him + we proceeded accordingly. All I could say to him was I was glad he came. Then my friends and I went out to Pho Lemongrass.

ARRANGEMENTS

click here:

In Memory of Shirley Silverman July 5, 1931 - June 27, 2012 Obituary Shirley Silverman, born July 5, 1931, 80, of Lynn, formerly of  Dorchester and Malden  entered into rest June 27, 2012. She was the beloved mother of Carol Miller of Brookline and  Barry Silverman of Canton. Loving sister of Ruth Weissman of Deerfield Beach, FL and the late Robert Sandler,  Professor of English Emeritus, University of Miami. Graveside funeral services will be Sunday at 1:00 P.M. at Kopaigorod  Cemetery, 776 Baker St., West Roxbury. She will be remembered for her beauty, intelligence,  strong wit, her humor, tenacity and aesthetic eye. In lieu of flowers, contributions in her memory may be made to N.A.M.I.  (National Alliance on Mental Illness,) 3803 N. Fairfax Dr. Ste. 100,  Arlington, VA 22203. www.nami.org Please see the Sandler Family Archives Blog for more  information about her life.

SHE IS GONE

The breathing tube was removed and she stopped breathing not long after that. It was quick. And painless.

"NO" TO DIALYSIS

I got a call from one of the doctors this morning. Renal failure. Kidneys not working. Do I want them to hook her up to a dialysis machine ? NO - she doesn't want that; I know her -

The only point to hooking her up with a breathing tube was so they could run tests to see if they could reverse what was happening to her. That was 48 hours ago and she is worsening. Enough.

I will head over to the hospital soon and go over this again - intersecting with the western medical establishment is never good - she is in the Medical Intensive Care Unit - yikes ! It's like being in one of those movies by Michael Crighton - dim, hushed hallways, cold, sterile, miles and miles of them - yucch !

I want her to be comfortable, not feel any pain and let her just drift off, doing it HER way -

ICU - BETH ISRAEL

The news is not good. She's still on a breathing tube while the doctors mull over what can be done based on the Catscan results. I told them if she cannot regain control of her bodily functions she is not interested..... they understood....DNR. Her kidneys are not functioning - renal failure - bad sign.............it's her, saying, "I am outta here......"

TRANSFERRED TO BETH ISRAEL - JUNE 25, 2012

I got the call nobody wants yesterday. Dr. Shaw called me from Spaulding Rehab North with the news "your mother is declining......all the sign indicate she is declining.......can you please come, she is refusing meds and tests........" I went and got a ride with my friend Howard. They said she needed a blood transfusion but could not get the IV in due her edema and swelling. She was supposed to get a CatScan of her abdominal/surgery area but her red blood cells started dropping. I left about 10:30 pm. Today she was finally transferred out of there to B.I. where she is in the Emergency Room right now -

The first thing they said when I got here was her breathing is too fast - they need to intubate her + help her breathe - she said NO - even after they said she could die she said "NO, I'm not going to die."  The doctors, by this time there were about 4 of them in the room - said they would sedate her and it would be temporary to give them time to do the tests she needs so I said, as long as she is sedated, proceed along. They told me it was my decision as her Health Care Proxy and that they did not think she understood everything that was happening.

She is getting better care here at the B.I. Emergency Room, more staff, more competent I think - Pray. And pray she isn't furious when she wakes up, if she wakes up.

TRANSFER DATE JUNE 21, 2012

I got two phone calls, one from Kathleen Doyle, Social Work Supervisor and Pat Williams, Case Manager, on Wednesday, June 20th. Both said my mother is medically stable and can be transferred to a place near me. Good news ! I investigated different places and Hebrew Rehab near me, in Boston seems like the best place. I called Pat Williams and left a voicemail for her re. Hebrew Rehab.

After 4:00 pm yesterday, Pat Williams called to say my mother will NOT be transferring because she has a temperature, a blood culture, chest X ray and other tests were ordered. Her doctor (mcdreamy no longer) is impossible to reach so now they are holding on to her like she is a science project. She's been through so much in 3 weeks - she says, ".....every day it's something else...." and she is right - it is !

It doesn't help that she is refusing meds, including the anti-fungal for the yeast infection that you get from taking anti-biotics and the tylenol to bring down the temperature. I asked her to consider taking them so she can get out of there once the temperature goes down. Stay tuned...........

TEST RESULTS

Polyps. Dr. Orringer told me "...they removed some large, large polyps. That explains the bleeding. They gave her coumidin and then they bled." Ok then..........I spoke to her and she went right to food - the first thing she ate was a chocolate popsicle and then some Teriyaki Chicken Wings. Good.

ADDENDUM: JUNE 21, 2012

I got a call from Dr. Orringer re. the biopsies. They found some adenomas, removed as much as they could see but they could not see everything because she did not do a great job on the prep work - meaning she did not drink enough of the holly Golightly.......so she should come back and get another colonoscopy in six months, no cancer now, based on what they could see...........

HOLLY GOLIGHTLY

I just got off the phone with Dr. Zaklin (aka dr. mcdreamy). First the good news. The blood transfusions worked. She is stable. He said, yes, the blood has thickened back up to where it should be. She is Not on Coumidin or Heparin. "Due to the nature of the clot, it's location, it's not that dangerous, it doesn't need to be coagulated......." She went in with chronic anemia (poor diet), then she had surgery, then she got a blood clot due to the anti-biotic I.V. and then her blood became too thin, it dropped to dangerous levels, and then she needed plasma and blood transfusions. Every 'body' reacts differently. Now, I hear she can do without the Coumidin.........ok then, YIKES !

LISTEN UP, KIDS............TAKE CARE OF YOURSELF..............

Next I spoke with the G.I. guy, Dr. Orringer. He just told me she is not prepped yet, meaning she has not drunk enough of the holly GoLightly. He told me there is an alternative to the GoLightly which he wrote in  the notes on the computer. She can have Miralax + Gatorade instead. Third alternative, Magnesium Citrate. While at the hospital yesterday, nobody mentioned any alternatives. They are so understaffed, Thom, the nurse apologized for the condition of the room. I saw a patient in the hallway last night in a johnny talking in a loud voice, "does anybody work here ?" Yikes again ! The best thing I heard from Dr. Orringer was "there is urgency, it's not an emergency.........we have to find out the source of the bleeding, it might be hemorrhoids........ depending on how she does with the prep, it will be done today or tomorrow or Wednesday." Then I spoke to the Nurse, Elizabeth + told her everything he said about alternatives. Elizabeth said she is doing better drinking the stuff but would check on the alternatives, because "she doesn't want her be NPO, Nothing per oral for that long......."

Stay tuned............

PLASMA + BLOOD TRANSFUSIONS TODAY

The coumidin they were giving her caused her blood to become too thin.  Last night at 8:00PM a nurse told me they were giving her 2 units of plasma to fix the problem. This morning a doctor called me + said there is still blood in the stool, now they are giving her a blood transfusion, this sometimes happens, but her blood pressure is good and that's the sign they look for.  They are also consulting with a Gastroenterologist.

I am on my way there now.

UPDATE 7:30 PM

I'm sitting in her hospital room now watching her sleep. When I arrived, her nurse Julie told me the G.I. guy, Dr. Oringer ordered a colonoscopy for tomorrow. Blood in the stool. Not good. While I was here today she was given three blood transfusions, the third one is running right now. They take her vitals and blood pressure every hour. So far, so good. However, she is supposed to drink that horrible stuff, GoLightly, that no one likes. I don't know how that is going to fly - she doesn't like it. She said she wouldn't drink it, we'll see.

Now Thom, the nurse and Suzanne are hovering over her with the curtain drawn. For the sixth time, they are verifying blood.......

UPDATE  11:30 PM


I left the hospital at 10:00 pm. I'm wiped. I left Shirley after getting a good report about her vital signs, all finished with the blood transfusions, her blood pressure is good - the labs are coming back with better numbers, going in the right direction. Her color is good. Problems remain with blood in the stool - she is bleeding internally and they don't know where. She is scheduled for an endoscopy and colonoscopy tomorrow which meant she couldn't eat the Teriyaki chicken wings she was looking forward to or the yogurt and probiotics I brought to counteract the anti-biotics. As stated above, she does not like the GoLightly drink and every time she sips on it, she makes a face and then needs the bedpan. She is in for an uncomfortable night. I explained the seriousness of the situation to her after trying every other approach - she might be schizophrenic but she is Not stupid. And then I said, it's up to you - you decide - she gets it. Then I said I had to go home and sleep and I would come back tomorrow..............

CAUTIONARY TALE - HEALTH CARE IN AMERICA + SHIRLEY

Shirley was brought in to the Salem Hospital May 30th for emergency surgery. Dr. Kastrinakis saved her life. They put her on an Anti-biotic I.V. On June 9th she was moved to Spaulding Rehab North, an acute care facility for surgery patients. Now they are killing her........am I exaggerating ?  See below.

This is the latest news from Jennelle, Nursing Supervisor at 9:20 PM.

MEDS:

1. HEPARIN I.V.  She has a blood clot in her arm; blood thinner; once her blood is thinned out, they will stop the I.V. + remain on Coumadin, see below. I was told this happens as a side effect from I.V.'s.

2.  COUMADIN  Blood Thinner by mouth. Takes 3 days to start working, hence the Heparin I.V. Blood tests round the clock to check and adjust the dosage.

3.  VANCOMYCIN: She's been having loose stools, constantly (although she told me it was better today). They have sent two cultures to the lab; both came back negative. Jenelle told me it is "probable C Diff" - a common infection people pick up in hospitals. Yikes ! They get a lot of false negatives so they are treating her as though she has it; treating her symptomatically with Vancomycin, 250 mg. in a drink. More anti-biotics. Double yikes !

4.  FLUCONOZOL:  An anti-fungul. Due to all the anti-biotics, she has a yeast infection.

The pharmaceutical industry is cleaning up and laughing all the way to the bank.

I am telling you kids - TAKE CARE OF YOURSELF - otherwise - once you enter what is euphemistically called Healthcare in America....... see above -

On a positive note, she seems to be recovering from the surgery itself. Now we'll see if she survives the treatment and hospital environment.

VISIT WITH SHIRLEY JUNE 10, 2012

TRAGIC, VERY, VERY SAD

My friend Jane offered to take me to see Shirley. First we stopped off in Lynn at her apartment building to get some things she needed. A transistor radio was on the list. For those who don't know, google it.

Shocking. Her appearance was shocking. I had not seen her in almost ten years. Her apartment resembled 'the land that time forgot.' The walls are stained with nicotine.

Her doctor happened to be there......on a sunday. Dr. Ryan Zaklin. (Can you say Dr. McDreamy ?) We spoke in the hallway outside her door as I explained to him that she does not answer the phone, she unplugs it from the wall and does not return voicemail messages. She is diagnosed as Paranoid Schizophrenic, non-compliant, + refuses to take meds.

When I first spoke to her, she was crying. She said she got my Mother's Day call but didn't call back because she didn't want me to hear her 'like that....' meaning crying. I suspect she has been in extreme pain for a long, long time. Something had to give eventually.

After we spoke about her condition, and what would be done, could be done, Dr. McDreamy said he would give her the best care, however, due to her age.............it remains to be seen what is 'realistic.'

Then he looked at me and said, he would provide the best care possible, and that he has compassion.....pause...... "having said that, on a subjective level, I have never seen in my years of practice, a patient like your mother who has not seen a doctor for 12 years, who is a heavy smoker, poor nutrition, her test results came back showing nutritional deficiencies, who has made 'poor lifestyle choices' AND who got to be 80 years old. I responded that I thought exactly the same thing - it's unbelievable she's gotten this far given all of the above........in a nutshell, he's never seen anyone like her.

I took pictures of her because I don't know if I will ever see her again. I'm taking it one day at a time. It has not been a week since I first learned she was in the hospital and had already been there for a week. First she was in the Salem hospital and now she is in Spaulding Rehab North. Due to the surgery and her bowel re-section, she is not digesting properly so she cannot start rehab at this time.  So much has happened I have not processed it all - time has speeded up and the days run together.......

Addendum: As I was getting ready to leave, she said, "carol, you look beautiful....."  I can't recall ever hearing  her say that. (she also commented on my hair: "your hair looks light......"  I said, that is called
G r a y .....she said "it looks good, I still think you would look good with blonde highlights...."

NAMI SUPPORT

I found a local NAMI support group that meets at the Newton-Wellesley Hospital Tuesday at 7:00pm. NAMI is the National Alliance for Mental Illness. I met a neighbor in my building who is actively involved in NAMI because his son is mentally ill and has not been seen or heard from in ten years. When I lived in Berkeley I discovered NAMI and met a wonderful woman who was the leader of the group. That's when I began reading up on Schizophrenia and learned about the different medications available for Shirley. She took them at that time; she was on Stelazine for seven years.

I also called Tricia who is the Facilitator of the group at the Newton-Wellesley hospital. She will call me later today. It really helps to speak with people knowledgeable about the illness who can understand what I am going through, and frankly have been going through my whole life. Now that I have gone through EMDR therapy for five + years, I am better able to cope with what is going on.

UPDATE 3:30PM


I just spoke to Tricia, what a blessing..........being the care-giver in this situation is overwhelming; I have not seen Shirley for almost ten years. It is a slightly unnerving and terrifying situation. Since she is not on meds, she is very paranoid and can be verbally abusive. I heard her say something about one of the nurses - yikes ! The last time I spoke with Shirley was about a year ago, this very time of year when I called to tell her Barry was in the Norwood hospital in the de-tox ward. It took her 48 hours, but my phone rang one night and caller I.D. said it was Shirley Silverman.....yikes again ! Tricia is expecting me at the meeting next Tuesday night at 7:00 pm and also gave some good advice on my visit with Shirley tomorrow.

UPDATE FOR SHIRLEY JUNE 9, 2012

I just spoke with Shirley, or שלובה, (Sloovah)........(we call each other by our Hebrew names). I told her I would be coming tomorrow with the things she wants from her apartment building.  She had two Catscans yesterday; she said yesterday was 'torture'. I could tell she was feeling a bit better since she described in detail what she had for breakfast, "scrambled eggs, mushrooms, and a muffin but the butter was hard." Oh and hot tea with milk. She said she is 'not comfortable' but again she said, and I was told by a nurse, she is scheduled to go to Rehab in the next day or so even though they have not gotten the results of the Catscan........


UPDATE 11:45 AM
I went out for a walk around the Chestnut Hill Reservoir, 1.56 miles. It's a very beautiful, calm and relaxing peaceful place - need a break from the latest drama.......when I got back, there were 2 messages from the hospital; שלובה/shirley called that she will be transferred to Spaulding Rehab. North today; I just got off the phone with her and heard a nurse say she will be transferred right now. We will speak later today when she gets settled in. I think it's good she is leaving the hospital and is well enough to go to Rehab..........

AS THE SANDLER FAMILY TURNS

I got a call on Wednesday from my friend Michael in Florida. He told me that Barry called him and said my mother, Shirley Silverman is in the hospital. When I called the hospital I learned she had been there a week. I spoke to her and her doctor and Case Manager and social worker. She had a perforated abdominal hernia. The doctor told me when she was admitted she was severely ill and they performed surgery immediately. "It could have gone either way." She is now recovering. We talked in the last couple of days and she has already been transferred to Spaulding Rehab North, right next to the Salem Hospital. The doctor told me "...she sat home for 16 days with an obstructed hernia and came in extremely ill....she sat home, drinking diet coke, hoping it would go away. " At that point I told him she has a diagnosis of Paranoid Schizophrenia, is non-compliant about taking meds and isolates.

On Thursday I became her Health Care Proxy and contact person at the Congregate Housing building where she lives.

On another note, my cousin Ken, packed up and left Billings, Montana to go to Deerfield Beach, Florida to be by his mother, my aunt Ruth who will be 91 come July.

Stay tuned........

UPDATE 11:50 AM

Shirley is not in rehab because her white blood count is up; she is on an anti-biotic I.V. and is scheduled for a cat-scan later today.........

4:30 PM
Tried calling my mother twice today, could not reach her.
Am waiting to hear from the doctor.

Special shout out to Molly M. who emailed me with her kind words and support.........thank you :)

6:00 PM

I was told by her nurse she had a catscan at 5:30 and then she would be eating dinner. I was not able to reach her. Dr. Kastrianakis never returned my call. Today I worried because of the elevated white blood count and the Catscan.........

EMAIL FROM KEN

cutting across the southern tip of illinois at the moment. 

after 9+ hrs driving i realized that the super 8 motel was like a lover calling me to bed. 

they have wireless. i tried calling but didn't leave a message. 

i passed thru wyoming / passed devil's tower

- the black hills of s dakota/ mt rushmore -

iowa / the corn palace (not as well known as the previous sights) -

missouri / the harry truman library/ crossed the missouri river - got lost in kansas city when the nice lady on my gps confused me - 

thru st louis / saw the the gateway arch

 be touching the western end of kentucky tomorrow - then thru nashville tn / atlanta ga & then into the state that george bush stole in the 2000 election.

it's 2600 miles & i'm about 1/2 way - not exactly the road warrior - more like an expert at interstate rest stops

ROSE BRONSTEIN-TEMPLE PROGRAM

   Rose (Rachel Esther) Bronstein z”l

20 Adar 5772          

 March 13-14, 2012

Program

Maariv Service-Evening Service- Led by Paula Korman

Family Words- Judi Resnick, Rose’s Niece

Keynote Address- 

Prof. Jonathan Sarna

Topic: “Rose Bronstein and the History of Jewish Education”