Saturday, June 30, 2012

ARRANGEMENTS

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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.

Wednesday, June 27, 2012

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 -

Tuesday, June 26, 2012

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......"

Monday, June 25, 2012

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.

Thursday, June 21, 2012

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...........

Tuesday, June 19, 2012

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...........

Monday, June 18, 2012

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............

Sunday, June 17, 2012

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..............

Wednesday, June 13, 2012

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.

Tuesday, June 12, 2012

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...."

Saturday, June 9, 2012

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..........



Friday, June 8, 2012

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.........

Sunday, June 3, 2012

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