Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]

We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:

Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.

She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:

Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.

Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:

Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.

That CJCMH article concluded that

Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.

Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

Back to hospital, this time as a patient

My body found a way to halt that downward spiral I was in.

Overwhelmed by my impending surgery (for severe POPS) along with my daughter Chaya's new medical crisis, I sensed impending implosion - the emotional variety.

My conversations were peppered with "I can't go on", "I'm going to have a breakdown", "I need help" rolling off my lips all day long. But certainly nothing that would land me in hospital.

Yet Friday night I developed weird symptoms - extreme weakness, nausea, vomiting and low blood pressure - and reluctantly took an ambulance to the emergency room, accompanied by one of my daughters.

When blood test results arrived and the doctor declared "You've had a cardiac event", I was  blown away and frightened. A diagnosis more like virus/dehydration was what I'd expected. "When could I possibly have had one?" I asked him incredulously.

After an angiogram which, thank G-d, didn't find any blocked  arteries, the cardiologists settled on the likelihood of Takotsubo Syndrome.

If you ever feel the urge to for a cardiac event, this is definitely the one to choose. But, sorry guys, it's overwhelmingly a post-menopausal women's condition.

For those of you female caregivers desperate for relief, relief, here's some more info about this relatively newly-categorized syndrome, only recognized in Japan since 1990 and in the West since 1998).

And for you over-stressed men, we'll see what my husband comes up with. He's been single-handedly caring for both Chaya and home as well as visiting me.

In the meantime, Chaya, treated with CBD alone, is still keeping her seizure rate low - but don't forget to keep that strictly under wraps. (Can't be too wary of that seizure-jinx!)

My husband also succeeded in eliciting a great sodium and potassium reading from Chaya in her latest blood test results so her dehydration is behind us. And while she's definitely not out of the gaunt range yet, the thin bulging vein on her jaw is now invisible. That leaves us with her liver and hematological issues to contend with. Our next appointment with the liver specialist on Sunday

I'm looking forward to having  her stand/walk and put the spoon independently in her mouth  again -   activities that have been deleted from her routine during my absence.

Takotsuba is apparently can recur - so we must somehow alter our home situation to prevent that. Consequently we've been desperately trying to contact the government where the social worker handling our daughter's case purportedly works. The hospital social worker told us that woman is the only key to any sort of government care assistance for Chaya's home care.

Were we to drive down to our local Aleh branch and deposit our daughter at the door, there is little doubt we would be treated to what their website calls "a break from the 24/7 attention require to care for them appropriately".

But because we are determined to keep our Chaya at home with us, we are rewarded by our so called "welfare state" with persistent and studious disregard.