November is Caregiving Month. Why it matters in Israel.

Image Source

How nice. The United States has given us our own month.

This year’s theme for National Family Caregivers Month, November 2018 is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. So here's mine:

Galvanize and supercharge the public - enlist them as supporters of Home Caregiving.

So, here goes.

You may be one of those swayed by Aleh's line. Their PR team may have convinced you of their indispensability. You may now share their conviction that our population of people with disabilities could not survive without Aleh's existence - or would suffer irreparable injury if were eliminated.

I don't blame you. You are in good company. Most Israelis have succumbed to the notion that the residents of Aleh's large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above version is a far cry from the truth. Aleh, Israel's largest chain of closed institutions for people with disabilities, actively solicits residents. 

It literally urges struggling parents to give up their children. Its staff assuages parents' concerns about the negative effects of institutionalization, reassuring the hesitant that they can "remain parents" even after abandoning their children. They assure parents they will be free to visit their children at any time, noting one mother who stops by the Jerusalem branch nightly at bedtime to see her child. They concede that handing over a child is "a difficult process" but ultimately worth it: "You will get back your life" once it's done.

Screen shot from this YouTube video

These promises are made without any knowledge of the child's disabilities or of their severity. One parent was actually phoned by the director-general of the Aleh enterprise, Rabbi Yehuda Marmorstein, who encouraged him to hand over his daughter shortly after the passing of the child's mother. That father relates the phone solicitation on a video proudly publicized by Aleh on its website.

Here in Israel, the belief that caring for children and adults with disabilities within large, closed, isolated institutions is ideal, is gospel. Even organizations that champion the rights of people with disabilities don't tackle this challenge unless blatant abuse of residents has been exposed. And that, as we all know, is not easy. 

Staff members worry they'll lose their jobs if they turn whistle-blower. Parents are fearful their children will suffer consequences if they speak out.

So, as I said, if you have succumbed to Aleh's PR that is understandable and you are not alone. But outside of Israel, it's an entirely different story.

Institutionalization is consistently maligned. For instance, here is a NY Times opinion piece from last week ("The Lasting Pain of Children Sent to  Orphanages, Rather Than Families") highlighting the enormous gap between Israel and the rest of the developed world:

Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages... But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is Israel treating its children with disabilities as if it were a poor country? The fact is that the government gives tens of millions of dollars annually to Aleh institutions. Here's how they say it on their website:

Q. What is ALEH’s annual budget?
A. ALEH’s operating budget for all four facilities is about $30 million. The Israeli government provides 85% of that sum, while the rest is fundraised by ALEH through private contributions. This amount does not include capital development projects, which receive 50% funding from the government.

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve this more cost effectively than through institutionalization.

As the NYTimes piece points out, many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism" is actively solicited by Aleh, which repeatedly posts profiles [here for instance] of overseas volunteers who have who have worked there.  Over a dozen such volunteer "testimonies", as Aleh calls them, currently appear on their website.

And more, from that NYTimes piece about volunteers:

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. ...But such volunteers might be doing more harm than good... Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away.Volunteers are also perpetuating a system that takes children from their families. The word “orphanage” is a misnomer, because the vast majority of children in orphanages have at least one living parent. These parents give up their children because they are too poor to care for them. What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So in November, make your voice against institutionalization heard. Support Israel's parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many of us who institutionalize our children would keep them at home.

Let's follow the lead of other enlightened countries. Could they all be wrong?

Our daughter's murderer - live on Jordanian TV yesterday

Here they are: Nizar and Ahlam Tamimi, seated so properly and civilly in a Jordanian TV studio yesterday, smiling so congenially, hands primly placed in their laps.

Who would guess that this is one of the most evil, bloodthirsty, terrorist couples alive today? 

If we, the parents of one of their many victims, would not remind the world that the path this pair has chosen is that of mass murder, would anybody know that? Would anybody care? 

Thanks to Prime Minister Netanyahu's misguided Shalit Deal, they have been enjoying a life of comfort and happiness under the paternal protection of Jordan's King Abdullah II. 

He is perpetually lauded as a "trusted ally" of the West in their struggle against global terrorism. Somehow his refusal to heed the US's demand for her extradition - since several of her victims were US citizens - hasn't ruffled anybody's feathers. 

But our determination to see her brought to justice is strong.

A hospitalization journal

Sunday, October 7

I'd hoped we could keep these hospitalizations annual - but it was not to be. Yesterday, a half hour after feeding herself a big meal with gusto, Chaya vomited it up in its entirety. Afterwards she copiously vomited liquid every couple of hours.

We tried caring for her at home administering Pramin suppositories - acquired from a local gemach  - as her pediatrician advised. He said that without fever or diarrhea the likelihood of dehydration was slim. But the Pramin had no effect. Horrific doesn't come close to describing that night. 

By morning, there were strands of brown blood in the vomit rendering the question of "what to do" a no-brainer. So here we are back in the ER, 11 months after Chaya's last hospitalization. 

So far, she's weathered a chest x-ray and a 12 hour struggle to get urine via a catheter (an incredibly incompetent nurse couldn't get any urine even though Chaya's on a fluid drip. The next shift's nurse collected it with ease. The consensus: it's another UTI. 

This leaves us at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because that seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?

Tuesday, October 9

Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room):

The doctors' diagnosis has done a 180: UTI is now negated and replaced with "some infection, somewhere", possibly gastroenteritis. Presumably that triggered aspiration of vomit since the blood test results indicate infection. The profuse vomiting may then have caused intestinal bleeding which appeared in her vomit. 

She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.

Bumped into that neurologist who we concluded had dumped us when she ignored our last email. Apparently she never saw it and is happy to resume her role as Chaya's neurologist. While she's pleased we consulted that senior epileptologist she recommended, she warns that getting regular appointments there won't be easy.

So she promptly ordered a CT and an EEG for Chaya. She also assured us she'll contact that terrific American neurologist whom we encountered during last November's hospitalization. He's the doctor who rescued Chaya from the avalanche of drugs that had reduced her to semi-comatose. 

I may have mentioned here that we can't contact consult him directly because he doesn't have a practice; this neurologist who will be our conduit to him decided to search for info about central fever and told us she learned it's not uncommon among uncontrolled epileptics!

Chaya is now off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form, so she's been getting that regularly). But I haven't resumed the cannabis yet.

We've missed hydrotherapy - Chaya's pinnacle of pleasure - which takes place on Tuesdays. We may also miss the long-awaited delivery of Chaya's new wheelchair scheduled for Thursday.

Wednesday, October 10

Back on the drip because, after a batch of heavy seizures, Chaya was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

And here are a couple of gems from the medicos...

Nurse about to finish her shift comes around with next shift's nurse to do what is known here as חפיפה (= passing the baton). I hear her mention that she had taken Chaya's temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that she is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." 

I regret that I didn't ask her: "Why? Do you think she might have epilepsy?"

Wednesday night, October 10

I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid seeing and hearing one, a male , tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it," she repeated. "Why don't you just do your job?" The guy shot back adding once again: "You're a smart-ass." 

Help! So many lives are in the hands of these nincompoops.

That same male doctor had earlier declared to my husband as he saw him approaching: "Whatever you're about to say, I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

Chaya will be released today. Didn't see that coming. The CT negated anything alarming and the EEG showed no change since the last one.

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed Chaya's swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. Minimize intervention is our credo.

Thursday night, October 11

Home! And, the icing on the cake is that the new wheelchair is here too! Here is Chaya, sitting in it for the first time:

Next up: Aleh actually encourages parents to give up their children to its institutions. It does so via its new Hotline. No wonder that hospital staff repeatedly asked us about Chaya: "Where does she live?" And were surprised by our response.