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.