It is September 11, 2017. Sixteen years ago the world experienced an act of terrorism that still reverberates. I was a new widow. My husband passed exactly two weeks prior (August 28, 2001) to this anniversary day in a hospice surrounded by our whole family, including  Savannah, our beloved Golden Retriever.

As a brand new widow, I had three sons who now felt like orphans, after what they had gone through; and after my explicitly, personal reactions, (everything in my life prior to that day prepared me for the illness, the caring, but nothing, nothing prepared me for actually being a single mother with three bereaved children, two of whom were teenagers and the youngest not even….) we were suffering the biggest loss of all of our lives.

Two brothers-in-law were actually in the buildings and both survived. Miraculously! For reasons unknown. But we didn’t actually know this, for hours. It was an excruciating day, and all I’d wanted to do that morning, was to keep my appointment at the cemetery to start the process of ordering the memorial stone, its base and get the process started, because I was told it had to be done before first frost, or I would have to wait for spring.

Missed that appointment. Took care of it later. As a teacher, I was looking forward to returning as soon as possible to school.  I sadly found out that two of my students had lost not only their dad, but their uncle as well. It was just so overwhelming.

I had prepared all these remembrance masses; set up, by myself, and also from many, many friends and family.  But all of a sudden, we were mourning the deaths of thousands of people. Including my youngest sister’s very good friend, who was all of 30 years of age.

I did my very best to console my children, ‘the brothers’.  But one took it all harder than the other two. I have often thought that this was the beginning of his particular downfall, because of the Epilepsy, because of the traumatic stress of all of this, because he was suffering from complicated grief.

We all did our very best. I reached out to the mom of my students and to my sisters, and to everyone I knew who were near to the actual site and went through the terror of leaving the city, being washed down with fire hoses, having to walk over bridges, leave cars, and take ferries. Everyone, including cousins, my sister, three brothers – in law.

In our grief, the brothers and I shared what we could with what little we had left to give. I know it wasn’t enough.

For years afterward I was stuck in summer. It was so, so hot that summer, and in the days after the death, and the funeral. But September 11, 2001 was a perfect day. A perfect, sunny, no cloud day. For years afterward, I would get in my car to go to work without a coat, because I still thought it was summer. And then I’d get to work, without a coat,  December, January, February, and think, my goodness I am cold, O, that’s right, that really did happen. OMG, all of that really, really did happen. And we were there.

 

 

Once again we face a long, three day holiday weekend.  While others are celebrating, we are frustrating.  Short staffed, irritable staff, workers who take off an extra day on this three day weekend…. extra day before and/or after (or both) that celebratory American holiday.  Leaving the patients lost in their own  selves,  whatever the treatment team wants the treatment team gets.

These are the long, most difficult days, without activities and without treatment.  In a Neuro Rehab, where most TBI patients reside, they have access to Skype, email, and other forms of communication, not to mention activities that are planned and implemented on these difficult days.  We look forward to the day when New Jersey relents and admits, we must go out of state.

In the meantime, a perfectly lovely young man copes, most admirably with his condition, his situation, and his ability to communicate with his family.  He is doing okay, you guys, he needs letters, phone calls, letters.  I talk to him multiple times a day.  He is coping.

Having spent four days at the Brain Injury Alliance of Pennsylvania’s annual conference in late June, he copes admirably.  I talked to so many people who said my son may just be remarkable, in the way he is handling this situation.

Right now I feel like I am in my own Civil War as I negotiate the laws of different states, as I am sure we are eventually going out of state for real treatment.  For a few years there was a doctrine called “Return to New Jersey”.  A document that forced even people who had been successfully treated out of state for 30 years or more, to return to the state, this thankfully was rescinded.  Phew…

Happy Labor Day to all of us and we hope and pray that this is the last three day holiday weekend my son spends in the wrong institution.  Best of love to all…m

 

 

 

 

 

 

Once again we face a long, three day holiday weekend. While others are celebrating, we are frustrating. Short staffed, irritable staff, workers who take off an extra day on this three day weekend…. extra day before and/or after (or both) that celebratory American holiday. Leaving the patients lost in their own selves, whatever the treatment team wants the treatment team gets.

And kudos to those staff members who do double and triple shifts, because they care!

These are the long, most difficult days, without activities and without treatment.

In a Neuro Rehab, where most TBI patients reside, they have access to Skype, email, and other forms of communication, not to mention activities that are planned and implemented on these difficult days. We look forward to the day when New Jersey relents, and admits, we must go out of state.
In the meantime, a perfectly lovely young man copes, most admirably with his condition, his situation, and his ability to communicate with his family. He is doing okay, you guys, and he needs letters, phone calls, and letters. I talk to him multiple times a day. He is coping.
Having spent four days at the Brain Injury Alliance of Pennsylvania’s annual conference in late June, he copes admirably. I talked to so many people who said my son may just be remarkable, in the way he is handling this situation.

Right now I feel like I am in my own Civil War as I negotiate the laws of different states, as I am sure we are eventually going: out of state for real treatment, for a few years there was a thing called “Return to New Jersey” a document that forced even people who had been successfully treated out of state for 30 years or more, to return to the state, this thankfully was rescinded. Phew…

I want to be sure that whatever we in my family are going through, there are many families going through far worse.  No one knows this better than me.

Happy Labor Day to all of us and much hope and prayers that this is the last three day holiday weekend my son spends in the wrong institution.

Small world, I wish.  I know there are other families out there and I want to reach out to them.

So I have my visit on Sunday, and it goes well, but when we ask to go for a walk, we are denied.  Not enough staff.  So we suck it up, as we often do, and enjoy just hugging and being together.

Since the closure of Hagedorn I can only say, and I am not the only one saying it:  the climate is just not the same.  The veracity of the staff who took on this particular case is just so overloaded, that I actually feel sorry for them.  The hospital is so understaffed, that, for the first time ever, we actually heard an announcement, right around the time we expected to hear:  ‘Visiting hours are over’….we heard instead: ‘There is a staff emergency; all staff must not leave until they check with administration’ which  means they were so short staffed, they couldn’t let any staff go… Now, over the years: I have heard staff commiserate when there is an incoming snow storm, or other weather emergency, but this was the first time I heard an actual call for staff to stay in place, till further instructions on a beautiful, and I mean beautiful, summer day.

Our visit went well, we are happy to be together, he misses everyone, especially his grandparents.  His grandparents’ birthdays are so close; it’s an enigma, one which our family has enjoyed for…almost 60 years…. Dad: August 21, Mom: August 24, but both are undergoing cataracts surgery for the next few weeks, so phone calls (and you already know the disgraceful manner as to which these patients have to communicate by that one, which hopefully works, Payphone), make them incapacitated to join us for a few weeks for a visit.

So, if it is okay (and it is not) we miss not only our walk, but our outdoor walk on the ‘courtyard’ where there are sunflowers galore and many butterflies and other flowers.

But this weekend I am alone, so I ask no questions, I make no Shirley MacLaine like performances; like in ‘Terms of Endearment’ (mostly because I exhausted that act during another family crisis in the same county, different hospital).

And I will go back this weekend, and will probably hear the same vaguely uncomfortable compliance by the staff; maybe if it is not raining, and they have the staff, we will get to go for a little walk.  I like going for a walk, with my son, I hate to see him idle and having to ask for his basic right, to walk, to exercise, to go out of doors.  Vitamin D is not for young people who are unable to go out in the sun. Prisoners have more rights.

 

 

 

 

 

 

 

 

 

 

 

Today is my mom’s birthday.  We were so happy to be able to call her and talk and send cards.  Our hearts go out to so many of our friends who cannot do that anymore. My son was allowed to send a birthday card to his Nana, and fortunately also, my Dad’s birthday (aka Pop Pop) was three days ago.  Yup: a Leo and a Virgo for the last 61 years.

So blessed are we all.

But my poor son was so upset, he sent one card, and he wrote on it “Happy Anniversary!”

Knowing it was a double birthday, no one helped him correct this (typical TBI/aphasia/memory loss related error);  instead they just put one stamp on the one card.

He is okay with it, now, but he knows he messed up and he has called me everyday this week to tell me how bad he feels, he meant Happy Birthday!!!!!!!

All I want to do is hold him in my arms, which I do over the phone, and tell him it’s okay, because it is okay.

But what I really want to do is say to staff:   What the H…?  When are you ever ever going to understand this is a person, a person with needs, and feelings, and love for his family?  He is not a throwaway, he is not an afterthought.

My son is not an afterthought.

Believe it or not, true as all truth can be.  My son asks  me for the soundtrack of Rent.  I ponder this request because I know it could be a trigger.  Anyway, so I hesitate for a few weeks, but he keeps asking, so I order the CD on Amazon.

And Amazon is awesome,  the CD arrives on a Sunday.  But from past experience, I know that means, not a lot, except, YEA it is there.

So I wait, like a normal person until Tuesday, and I call, and I ask for the Mail room.

They tell me yes, it arrived on the dock on Sunday, got to the mail room on Monday, but the unit doesn’t pick up till 1:00 pm; meaning they missed it Monday…but “good news: they will definitely pick it today by 1:00 pm”.

Phone call from my son, late afternoon after 3:00 pm, I say: “your CD is in, and on the unit; ask the nurse for it, you could probably relax and enjoy, before or after dinner”.

They actually show it to him, but do not open it.

Forty five minutes later, my phone is ringing, “Ms. Moran your son is in restraints, couldn’t be helped, he was so upset.”

O, god this hurts, I hate this, I ask;  “What happened to the CD? I told him myself that it was there and he could listen to it like soon, like this evening?”

O, response from nurse, ‘all mail goes through our social worker who is not in today. Your son will have to wait until his social worker returns, probably tomorrow.’

I am like, Can’t someone else open the CD and put it on for him? I just told him it is there?

Response from Nurse: You already knew all mail goes through the social worker.

You have to wait until tomorrow.

By this time, I am off the wall crazy.  No, I didn’t know that!  No one ever told me that! If I had known that, why would I tell my TBI son that he can listen to the CD in minutes?

Eventually, of course, the next day, he got to listen to his CD, RENT, the musical, of all things, I so worried, but he loves; it all good thoughts.

This is my daily life as the parent of a person living in a psychological institution in the state of New Jersey.  My daily life is agony, what is my son going through?  And does anyone care?

 

 

 

Taking on the responsibility of going public with a newspaper reporter, (thank you Susan) and having both of our names published is a very scary undertaking, scarier than I thought.

But, big but….The situation is completely intolerable, and it is time to go ahead and lose the stigma.

Things this week alone have been just so crazed, and the stress on my body and heart is just so intense that the only feeling I can adhere to, other than guilt, is how does my son feel?  What is it really like to live there everyday, without the proper treatment for his most personal actual condition? Brain Injury, Epilepsy, and the depressing hopelessness of knowing that now, after all of these years, there seems to be no hope.   There is, of course, and I work on it everyday, but it’s taking so long.  It’s hard not to let it take over body and spirit.

When he first started out he was in this small country hospital and then suddenly, and with very little warning, moved to this three story abysmally large structure.  And now it is so overcrowded and the staff is leaving so rapidly, causing a shortage of real competent caregivers.

Every time I visit, there is a new rule, new people and new barriers to conducive family visits.  One of my biggest hurdles is getting to go for a walk, when I see other patients on their own, walking around with headphones, carrying purses, the loneliness is palpable, and I pray for the day, when our family crisis is over and I can begin to advocate for others, in a kind of;   “If I knew then what I know now”… vein…..O boy what I know now compared to my complete innocence and remarkable hope at the beginning.

Please New Jersey wake up, do the right thing, and let us rest.

 

http://www.nj.com/healthfit/index.ssf/2017/08/njs_largest_psych_hospital_is_overcrowded_and_unsa.html

 

 

 

Just so tired of hearing that the schedule built for my loved one isn’t being adhered to.  Just so tired of hearing that we are going backwards, when we were moving forward with every step.

How can a young man be able to go forward without support that is consistent?  How can professionals just let this lie?  So many meetings, so many discussions, so many emails, so many times that friends and family have reached out, in addition to my self to look at why this could happen and what are we going to do about it?

Just so tired of calls in the night telling me that my son is in dire straights, and there is nothing I can do. When does anyone, will will someone really expose what is actually happening at these large institutions?  A safety plan is not a treatment plan, and without a treatment plan, what do we have?

I attended the Pennsylvania Brain Injury Conference for three days, met lots of people with lots of personal experience and information and advice, but I can’t call them in the middle of the night!  Another night of no sleep, anxiety, worry, and deep concern.

Prayers are the only hope.  I am overwhelmed by mine, I hope I have the prayers of others.

When you are living with a loved one in an institution, everyday is a new adventure, and it’s not all good.  There is one payphone on the unit.  And frequently it is broken, or sometimes patients get on and call 911 to report that they are being ” held captive”

Then the hospital shuts down that phone, oftentimes forgetting to turn it back on.

Not having communication in 2017 is devastating.  Patients do not have access to email or texting or skype, prisoners have more rights than that!  Maybe their conversations are recorded, but they have access to email, and hospital patients do not.  Do you know what it is like for extended family to NOT be able to email their loved one?

Busy aunts, uncles, cousins, grandparents, and friends, are just at the mercy of the one payphone on the unit, which is, when it is working, it is busy.

I have been called by staff to say : your family member would like to talk to you.  Please call,  so I call, I call, and call, and hours later, I call the nurse:  I say I have been calling and they say “well, that’s the patient’s payphone, if no one is in the hallway to pick up, no one will pick up”..

Sorry but you called me!  You called me to tell me to call the payphone to talk to my loved one, and no one brought him to the phone?  Really?  So he thinks I haven’t even tried to reach him.  Leading to whatdoyouthink?  More despair, more depression, and more hopelessness.

Not cool.  All over the hospital are signs that say: RECOVERY; RECOVERY is POSSIBLE; Long Live Recovery.

So, the phone is broken and we have to wait til Monday to fix it.  Really?  No one can fix it now?  Back in the day we had  blue laws, now we work seven days a week 24/7.  In regular hospitals, the communication system works.  And if it breaks, it’s fixed!

I am writing to bring hope, to bring knowledge and education, to let the public know what is really happening to their precious funds, because the law says that these large institutions should be done away with and small community based rehabilitation centers were  supposed to be the future

Where are they?  Many states have them many patients are in better straights by living in the community, at least they have phones.

I am the parent of an adult child who is living in a state mental institution, although he really suffers from an acquired brain injury, severe epilepsy, and now a learned pattern of behavior that is identified as institutional syndrome.  Once the patient has lived for a period of time that is no longer helpful, or conducive to the original diagnosis, or reason for commitment, the person develops and learns behavior from the other patients, from the staff and from the complete and total isolation that institutions generate by their very being.  For example, have you ever been hospitalized?  Maybe had a baby?  Lights are on 24/7, noise is constant, and intercoms speak loudly of Code Blue “or” All available help to unit….” just think for one minute what it would be like to live like that for years, because no one will listen to the family’s concerns, their constant advocacy that can ratchet up even to a national level. What is it really like for that patient? What is it really like for that family?

I have a background solidly in education; I have worked with many kinds of students with many kinds of needs.  But I have also lost a young husband to a rare cancer, sinus cancer. From the time I was 39, he 45, and then, I, 43 and he 48, we raised three boys during radiation, chemo, surgery after surgery, hospitalization after hospitalization, and then we lost this most brave husband, father, son, brother, son in law, brother in law, friend and all around great guy.  That’s my background, mother, wife, teacher, advocate and now single parent of three young men, one of whom has been totally disabled by the mental health system that is seriously wanting in the compassion department.

Not bitter, not vindictive, just a mother who needs someone to pay attention.  Pay attention because this shouldn’t have happened in the first place, and it cannot continue.

Traumatic Brain Injury, Epilepsy, Mental Illness, a family torn apart, and a state that will not listen.  A state that lies to your face after you have researched and worked and dedicated yourself to this cause, this son, this family member who is suffering.